For the last month we have been weaning Sam off of his neck brace by adding time out of it at 4 day intervals. We finally made it to 8 hours a day out of the brace and today's follow up appointment. At this appointment we had a new set of flexion/extension x-rays taken. Let me take a moment to mention here that Sam still has significant loss in looking up, but he moved his chin within an inch or so of his chest. I was floored. This is way beyond anything I would have dared to hope. We were told to expect 95% loss of movement. We still have not tried any side to side. Still praying that Sam will have as much mobility as possible. But being able to look so far down will make a huge difference in his ability to walk without accident, take stairs with confidence and read comfortably.
Dr. Alden studied these new films to be certain that with the increased freedom from the brace that none of the hardware was loosening up. He showed us the x-rays and indicated that all of the screws were holding in place and that the plate was not shifting. This is the result we and the doctor had hoped for. Sam was then given permission to no longer wear his neck brace. (He had taken it off at 8 o'clock this morning, which allowed for him to still have it off at his afternoon appointment. He had said he had hoped he wouldn't have to put it back on at all. I am so pleased he was right!) We have one happy boy this evening.
The doctor was also able to show us a few other things on the x-rays that we have been waiting to see. You may recall me saying earlier that the titanium hardware was really only the temporary fix to fuse his neck. There was a bone graft placed during surgery and the hope is that it grows new, dense bone that solidifies the connection from his skull to his spine. This was the first set of films to show that there appears to be some increased bone growth along the bone graft they put in between his skull and his second cervical plate (C2). Dr. Alden said that a solid fusion in that area is the minimum we need for a successful result. So far it appears to be beginning that process. Furthermore, the doctor pointed out the size of the gap that is between the C2 and C3 plate. That gap is significantly smaller than it was after surgery. Having a complete solid bone there would make the fusion results that much better, and it appears also to be heading in that direction. Praising God!
Along with no longer having to wear the neck brace, Sam has been released to increase some of his activities. One of the things he was enjoying prior to his diagnosis was jogging. He has been restricted from it for several months now. Dr. Alden has given him permission to jog as he feels able. He can also begin to try swimming again, although I think this will take some "re-learning" with his lack of neck movement. He is thrilled to be able to run and try to keep up with his friends again. Pray for this mother that I might not be a nervous wreck and ruin his good time with constant cautioning.
Next step for us is another follow-up on January 30th. They will do another flexion/extension x-ray at that time to continue to monitor that no hardware is coming loose with increased activity. After that we will follow up again in March with a CT scan. This will give the doctor a more detailed and exact view of the bones and show how much healing and growth have taken place. We also have a sleep study and neurologist appointment in March. This sleep study will let us know if Sam is still having central apnea at night. We are cautiously hopeful that the surgery may have helped this condition, while at the same time remembering that the purpose of the surgery was not fixing existing damage, only preventing more catastrophic damage to Sam's brain. Please pray for God's will for all of these outcomes.
Thanks for all of your prayers on this journey. We have come so far, and I am so thankful for everything God has done for us. Awed and amazed, that's all I can say.
Monday, December 19, 2011
Monday, November 21, 2011
11-21-2011 Weaning off the Brace
We had a follow-up appointment today in Chicago. Dr. Alden met with us briefly to examine how Sam's rods would react with movement. This is the first time in 3 months that Sam has had the brace off while sitting up. The doctor then slowly bent Sam's head as far forward as possible, while feeling through his neck to see how the hardware was holding. The idea was to make sure that given some movement that the rods, plates and screws would all stay where they belong. I am excited to say that his forward motion is better than I was expecting! He then went on to tilt his head back, while still making sure the hardware felt OK. Sam was more than happy to do this, but there was quite a bit of grimacing along with these first movements. Sam said it felt partly painful and partly just super stiff.
Dr. Alden was happy with what he saw and felt and sent us on for a set of flexion/extension x-rays. In these x-rays they did the same forward/backward motion and took x-rays in those positions to be able to see that everything has stayed in place. Sam said the second set of movement, while still really stiff, was less painful. A short time later we were back with Dr. Alden. He said that all of the hardware was staying in place very well. Our very funny doctor then turned around to stare at Sam with a passive and straight face and just sat there looking at him. Finally, he says, "you look like you want something from me...? Oh, yeah, we can start weaning you off the brace."
We get to start with one hour a day for 4 days, then two hours for 4 days, and so on. Most of you will not see him right away without the brace, other than above, as the doctor wants him to pick slower times at home as we start this process, and be sure to take it easy. He is also not allowed to give demonstrations of how far he can move his neck quite yet. We then need to return to Dr. Alden on December 19th. By that point Sam will be at eight hours per day, and near the end of the weaning process. The doctor will then take another set of flex/ext x-rays to be sure nothing has started to loosen with increased movement. If we pass the test Sam will be set free from his brace just in time for Christmas.
I will take this time to once again thank God for the tremendous blessings He has given us. I praise God for the birth of Jesus, for holding on to our family and drawing us close to Him, and for the work He has done, and continues to do in Sam.
Dr. Alden was happy with what he saw and felt and sent us on for a set of flexion/extension x-rays. In these x-rays they did the same forward/backward motion and took x-rays in those positions to be able to see that everything has stayed in place. Sam said the second set of movement, while still really stiff, was less painful. A short time later we were back with Dr. Alden. He said that all of the hardware was staying in place very well. Our very funny doctor then turned around to stare at Sam with a passive and straight face and just sat there looking at him. Finally, he says, "you look like you want something from me...? Oh, yeah, we can start weaning you off the brace."
Now that's a happy boy! Love seeing that smile again!
We get to start with one hour a day for 4 days, then two hours for 4 days, and so on. Most of you will not see him right away without the brace, other than above, as the doctor wants him to pick slower times at home as we start this process, and be sure to take it easy. He is also not allowed to give demonstrations of how far he can move his neck quite yet. We then need to return to Dr. Alden on December 19th. By that point Sam will be at eight hours per day, and near the end of the weaning process. The doctor will then take another set of flex/ext x-rays to be sure nothing has started to loosen with increased movement. If we pass the test Sam will be set free from his brace just in time for Christmas.
I will take this time to once again thank God for the tremendous blessings He has given us. I praise God for the birth of Jesus, for holding on to our family and drawing us close to Him, and for the work He has done, and continues to do in Sam.
Wednesday, November 9, 2011
Neurology follow-up 11-9-2011
Hi friends and family. We had a last minute follow-up today with Sam's Neurologist in Peoria. This is not the surgeon, but the doctor who found the original diagnosis, monitors his sleep apnea, and keeps an eye on how his brain is functioning. This follow-up was scheduled for a few weeks from now, but had to be changed and we took a last minute opening rather than wait a lengthy time or see an assistant.
A few entries ago I had indicated that Sam's AHI index (how many times he stops breathing per hour overnight) was a bit out of whack. It has lowered from the worrisome highs we had seen, but continues to be a little higher than we would like. I have had many phone conversations with his neurologist about this and we can not come up with a good reason. We had him wear a monitor overnight that showed he was not having any lows in his pulse or oxygen levels. This indicates that while his CPAP is showing he is stopping breathing, he may not be. The only way to know for sure is another sleep study. The doctor feels that since he is not showing any other signs of distress, we will hold off on another sleep study for now. Instead, we are going to wait a few months. The neurosurgeon has indicated that by late March any improvements and healing from his surgery, at least neurologically, will be as good as it will get. At that time we will then have a sleep study with out his CPAP. This will show us if he still needs the CPAP or not. This sleep study will take place March 20th.
It is important to note here that while we would be thrilled and thankful if Sam's sleep apnea has been solved by his surgery, that was not the goal. The goal of everything he has been through was to keep him from having further damage to his brain. The possibility exists that some of the symptoms, including his central apnea, could improve, but was not the reason for the surgery. That being said, please pray that Sam's apnea has resolved and he could get rid of the CPAP. It would be so wonderful for him to be able to see a tangible benefit to everything he has had to endure.
The neurologist asks Sam to do a variety of things that shows her how his body and brain interact. In the beginning she saw some muscle weakness, uneven strength between the two halves of his body, and abnormal reflexes. These were some of the signs that led her to believe he needed an MRI, leading to his diagnosis. After retesting these things today, she said there may have been a very slight improvement, but nothing of significance. As I said earlier, no one necessarily expected improvement to these things, but it is slightly disappointing anyway. With this in mind I am being cautious about hoping that his apnea will have resolved, but I also know God can provide miracles. We will be content in whatever the end result ends up being. Other than that, the neurologist was thrilled with the success of Sam's surgery. She has received all of the notes from our neurosurgeon and was more than satisfied with the stabilization that was achieved.
Our next appointment (and milestone) will take place November 21st in Chicago with our neurosurgeon, Dr. Alden. At this appointment he will decide if we can start to wean Sam off of his neck brace. I am praying that this will be possible. Sam is VERY excited about the possibility of getting out of the brace, and I believe he would be extremely disappointed if not. If we get the go ahead, it will take about a month to wean him off completely while he regains neck strength. This means he may be able to be out of it completely by Christmas. This would be an excellent gift for him.
Overall, Sam is doing fantastic. He has no pain, is able to do all activities necessary to take care of himself, and feels good enough that I have to constantly remind him he still has to be careful and take it easy. Thank you again for all of your prayers. I will update you again after his Chicago appointment.
A few entries ago I had indicated that Sam's AHI index (how many times he stops breathing per hour overnight) was a bit out of whack. It has lowered from the worrisome highs we had seen, but continues to be a little higher than we would like. I have had many phone conversations with his neurologist about this and we can not come up with a good reason. We had him wear a monitor overnight that showed he was not having any lows in his pulse or oxygen levels. This indicates that while his CPAP is showing he is stopping breathing, he may not be. The only way to know for sure is another sleep study. The doctor feels that since he is not showing any other signs of distress, we will hold off on another sleep study for now. Instead, we are going to wait a few months. The neurosurgeon has indicated that by late March any improvements and healing from his surgery, at least neurologically, will be as good as it will get. At that time we will then have a sleep study with out his CPAP. This will show us if he still needs the CPAP or not. This sleep study will take place March 20th.
It is important to note here that while we would be thrilled and thankful if Sam's sleep apnea has been solved by his surgery, that was not the goal. The goal of everything he has been through was to keep him from having further damage to his brain. The possibility exists that some of the symptoms, including his central apnea, could improve, but was not the reason for the surgery. That being said, please pray that Sam's apnea has resolved and he could get rid of the CPAP. It would be so wonderful for him to be able to see a tangible benefit to everything he has had to endure.
The neurologist asks Sam to do a variety of things that shows her how his body and brain interact. In the beginning she saw some muscle weakness, uneven strength between the two halves of his body, and abnormal reflexes. These were some of the signs that led her to believe he needed an MRI, leading to his diagnosis. After retesting these things today, she said there may have been a very slight improvement, but nothing of significance. As I said earlier, no one necessarily expected improvement to these things, but it is slightly disappointing anyway. With this in mind I am being cautious about hoping that his apnea will have resolved, but I also know God can provide miracles. We will be content in whatever the end result ends up being. Other than that, the neurologist was thrilled with the success of Sam's surgery. She has received all of the notes from our neurosurgeon and was more than satisfied with the stabilization that was achieved.
Our next appointment (and milestone) will take place November 21st in Chicago with our neurosurgeon, Dr. Alden. At this appointment he will decide if we can start to wean Sam off of his neck brace. I am praying that this will be possible. Sam is VERY excited about the possibility of getting out of the brace, and I believe he would be extremely disappointed if not. If we get the go ahead, it will take about a month to wean him off completely while he regains neck strength. This means he may be able to be out of it completely by Christmas. This would be an excellent gift for him.
Overall, Sam is doing fantastic. He has no pain, is able to do all activities necessary to take care of himself, and feels good enough that I have to constantly remind him he still has to be careful and take it easy. Thank you again for all of your prayers. I will update you again after his Chicago appointment.
Monday, October 10, 2011
10-10-2011 Another Follow-up, Hardware Pictures
We had another trip to Chicago for a follow up with the Neurosurgeon. This time we spent an enjoyable weekend with my parents prior to today's appointment. It was our first overnight trip since leaving the hospital. I was a bit anxious about handling some things (like not having his high back chair to rest his head against, and some other items that have just made stability and daily tasks easier) but everything went very well. Sam is at the point where we are no longer pushing him to move more, but instead trying to slow him down a little. Aside from the neck brace, one would never guess what he went through less than 6 weeks ago. It is a constant balance of helping him try to enjoy many of the things he always enjoyed before, and cautioning him that he still has a long time until he is considered recovered. He shows often now the full of spunk, grinning boy we have always known him to be.
Upon arriving at Children's Memorial we had a new set of x-rays taken. These are then transferred over to the Doctor to look at. Dr. Alden had a brief examination of Sam and felt he was doing very well. He always gets a pretty good laugh out of Sam (and us) by repeatedly whacking Sam's reflexes while insisting he hold still. He said the incision site looks great. I have to agree. The scar will be as minimal as possible.
Dr. Alden was very pleased with the x-rays as well. He said the rods, plates and screws looks very solid and well aligned still. I have shared some x-ray images below. They are both post-operative, just slightly different positions.
In the one on the left (taken today) Sam's body was just tilted enough that you can see all of the screws if you look closely. On the right (taken Sept. 19th) the x-ray was taken in such a position as it was straight on and you can only see the closest set of screws. I will describe what you are seeing below the picture.
This is obviously a side view of the body. The really bright white parts are the Titanium pieces that were placed during surgery. Starting at the top: At the back base of the skull there is a titanium plate attached with very short thick screws, two on each side. From that plate extends two rods. You can see they are bent in order to follow the curve under the skull and down to the spine. Next is a set of long screws holding the rods to the second cervical plate. Right above the image of these screws you may (but probably not) be able to see very faint bone mass. It will look very light in comparison to the other bone visible in the x-ray. This is the bone that was placed that should grow dense and strong and eventually grow fused between the skull and cervical plate. This is what they consider the desired permanent fusion. The titanium, while it will not be removed, is only considered the short term fix. Below that set of screws you will see another set of long screws. These secure the rods to the third cervical plate. These screws gave the doctor the good, solid hold on the rods that he wanted. The area where you see the titanium placed is the length of neck that Sam will now be unable to move. The rods, and eventually bone, will prohibit any flexibility or rotation throughout that area. We are still very hopeful that as young as he is, Sam will learn to compensate for that loss by developing greater flexibility in other areas. Kids are usually highly adaptable to circumstances. We are blessed and thankful to already see it happening a little. He already turns his entire body pretty well and doesn't seem to have too much difficulty adjusting himself to see things not in his direct line of vision.
Our next follow up will be in 6 weeks. At that time Dr. Alden will take a similar set of x-rays. If he is still happy with how everything looks at that point he will send us back to radiology for another set of x-rays that will take pictures of Sam's neck in various stages of flexion and extension. The idea is to see in an x-ray that everything is staying where it should as the lower part of the spine bends back and forth. If he is happy with these x-rays, we will be given a plan to wean Sam off of the neck collar. Over about an additional month we will begin to take off the collar starting with an hour at a time and increasing until he has regained sufficient strength to be without the collar full time. Sam was very excited to hear the doctor talk about taking off the collar at some point even though it was still 6 weeks away. He was also a little disappointed and suprised (as were we) to find out it would take a month of weaning him off after that before he was rid of it for good. But in the end we all understand why. Major surgery and three months in a neck brace would certainly diminish the muscles he uses to hold up his head and it only makes sense that they would have to have time to strengthen.
Thanks for continuing to hold up Sam throughout his recovery. We pray that the alignment would stay straight, and that the bone would grow strong. Please pray as well that Sam would remain patient and not push too hard to resume activities that will not be safe for him for quite a while yet. Please pray as well that as he has resumed a lot of normal activities that he would not fall, be bumped hard or otherwise have any accidents that would comprimise his surgery before he is fully healed. (The expectation is that it will be about 5 more months before he has fully recovered and a year to be back to 'normal' or at least the new 'normal')
We continue to praise God for holding our family firmly in His grip. We praise Him for all the wonderful friends and family who have sent cards, gifts, meals, the list goes on and on. (It was actually about 2-3 weeks before we had a day that the mail did not bring at least a card, usually two or three, for Sam. Thank you, thank you, thank you for showing so much love to my sweet boy!) We continue to praise God as well for His sovereign plan and the work He is doing in our lives.
Upon arriving at Children's Memorial we had a new set of x-rays taken. These are then transferred over to the Doctor to look at. Dr. Alden had a brief examination of Sam and felt he was doing very well. He always gets a pretty good laugh out of Sam (and us) by repeatedly whacking Sam's reflexes while insisting he hold still. He said the incision site looks great. I have to agree. The scar will be as minimal as possible.
Dr. Alden was very pleased with the x-rays as well. He said the rods, plates and screws looks very solid and well aligned still. I have shared some x-ray images below. They are both post-operative, just slightly different positions.
In the one on the left (taken today) Sam's body was just tilted enough that you can see all of the screws if you look closely. On the right (taken Sept. 19th) the x-ray was taken in such a position as it was straight on and you can only see the closest set of screws. I will describe what you are seeing below the picture.
This is obviously a side view of the body. The really bright white parts are the Titanium pieces that were placed during surgery. Starting at the top: At the back base of the skull there is a titanium plate attached with very short thick screws, two on each side. From that plate extends two rods. You can see they are bent in order to follow the curve under the skull and down to the spine. Next is a set of long screws holding the rods to the second cervical plate. Right above the image of these screws you may (but probably not) be able to see very faint bone mass. It will look very light in comparison to the other bone visible in the x-ray. This is the bone that was placed that should grow dense and strong and eventually grow fused between the skull and cervical plate. This is what they consider the desired permanent fusion. The titanium, while it will not be removed, is only considered the short term fix. Below that set of screws you will see another set of long screws. These secure the rods to the third cervical plate. These screws gave the doctor the good, solid hold on the rods that he wanted. The area where you see the titanium placed is the length of neck that Sam will now be unable to move. The rods, and eventually bone, will prohibit any flexibility or rotation throughout that area. We are still very hopeful that as young as he is, Sam will learn to compensate for that loss by developing greater flexibility in other areas. Kids are usually highly adaptable to circumstances. We are blessed and thankful to already see it happening a little. He already turns his entire body pretty well and doesn't seem to have too much difficulty adjusting himself to see things not in his direct line of vision.
Our next follow up will be in 6 weeks. At that time Dr. Alden will take a similar set of x-rays. If he is still happy with how everything looks at that point he will send us back to radiology for another set of x-rays that will take pictures of Sam's neck in various stages of flexion and extension. The idea is to see in an x-ray that everything is staying where it should as the lower part of the spine bends back and forth. If he is happy with these x-rays, we will be given a plan to wean Sam off of the neck collar. Over about an additional month we will begin to take off the collar starting with an hour at a time and increasing until he has regained sufficient strength to be without the collar full time. Sam was very excited to hear the doctor talk about taking off the collar at some point even though it was still 6 weeks away. He was also a little disappointed and suprised (as were we) to find out it would take a month of weaning him off after that before he was rid of it for good. But in the end we all understand why. Major surgery and three months in a neck brace would certainly diminish the muscles he uses to hold up his head and it only makes sense that they would have to have time to strengthen.
Thanks for continuing to hold up Sam throughout his recovery. We pray that the alignment would stay straight, and that the bone would grow strong. Please pray as well that Sam would remain patient and not push too hard to resume activities that will not be safe for him for quite a while yet. Please pray as well that as he has resumed a lot of normal activities that he would not fall, be bumped hard or otherwise have any accidents that would comprimise his surgery before he is fully healed. (The expectation is that it will be about 5 more months before he has fully recovered and a year to be back to 'normal' or at least the new 'normal')
We continue to praise God for holding our family firmly in His grip. We praise Him for all the wonderful friends and family who have sent cards, gifts, meals, the list goes on and on. (It was actually about 2-3 weeks before we had a day that the mail did not bring at least a card, usually two or three, for Sam. Thank you, thank you, thank you for showing so much love to my sweet boy!) We continue to praise God as well for His sovereign plan and the work He is doing in our lives.
Monday, September 19, 2011
9/19/2011 - Birthday, 2 week followup, and a great picture!
Sam celebrated his 11th birthday this past Sunday. While it was definitely slower paced than we are used to, it was a good day. He received lots of Legos, saw Kungfu Panda 2 a second time, went back to church for the first time since we left for Chicago, and had Speatzel (his favorite -a German noodle/dumpling) for dinner. We of course were very thankful indeed to be celebrating Sam's birthday with him on the mend.
Today we traveled back up to Chicago for Sam's 2 week follow-up appointment. First stop was x-rays, then on to see the doctor. Dr. Alden thought Sam's surgical site was healing beautifully. He removed the stitches today, which Sam did not particularly enjoy, but I am sure he is glad they are gone now that it is done. So far there has been no evidence if any leakage of spinal fluid, or infection. Praise God. We then went to another room to look at the x-rays. They are looking great. The x-rays are taken from the side and everything appears to have the correct alignment still. I wasn't sure after the surgery how Sam would feel about Dr. Alden at this point, but it looks like Sam and the Doctor will be able to stay friends.
I have been trying to figure out how to share this picture. Dr. Alden had the idea that I could just take a picture of his side by side view, so I hope this will come across OK. This is the shot that is priceless to me.
The first picture is the before, and the one next to it is post surgery. The red circle shows the top of the spine that is poking in to the brain stem Notice how much straighter it is in the second picture. Also you can tell that the indent into the brain stem is no longer present.
The black circle shows where the Chiari malformation is. In the first picture you can see, if you look closely, how the brain tonsils (bottom material of the brain) descends down and is pressed between the spinal cord and the cervical plates. In the second picture the tonsils have risen back up and is no longer compressed or pressing against the spinal cord.
The blue circle is around a small triangular area that Dr. Alden used to show us some distance markers. I know it has more significance than what I can explain, but this is as far as my understanding could go. In the first picture the top of the spine presses right up against the triangular space. The second picture shows that the triangular area is now a full centimeter away from the spine.
Here is the side by side without marks so you can see it a little clearer.
On a funny side note, the medical records show that in about a 3 week period from before to after surgery, Sam gained just over a 1/2 inch of height. They definitely accomplished stretching things out!
Last, I am happy to share that we have no explanation, but Sam's apnea numbers that have not been good since arriving home, have continued to lower slowly. The last two nights have been low enough that they are considered to be within acceptable limits. We don't know why they went up, and we don't know why they are going down, but I am choosing to simply thank God that He has continued to keep His mighty hand on us. Sam's spirits are continuing to improve as well. He is choosing to pursue interests a little more readily, and is starting to look forward to getting re-involved in regular activities at home and with friends. Thank you again for your prayers on these issues. At this point we will continue to pray for good solid bone growth and that in the meantime his alignment stays looking good. We return to Chicago for his next followup in three weeks. I will look forward to updating you on his progress at that time, unless anything comes up to share beforehand. Thanks again everyone.
Today we traveled back up to Chicago for Sam's 2 week follow-up appointment. First stop was x-rays, then on to see the doctor. Dr. Alden thought Sam's surgical site was healing beautifully. He removed the stitches today, which Sam did not particularly enjoy, but I am sure he is glad they are gone now that it is done. So far there has been no evidence if any leakage of spinal fluid, or infection. Praise God. We then went to another room to look at the x-rays. They are looking great. The x-rays are taken from the side and everything appears to have the correct alignment still. I wasn't sure after the surgery how Sam would feel about Dr. Alden at this point, but it looks like Sam and the Doctor will be able to stay friends.
I have been trying to figure out how to share this picture. Dr. Alden had the idea that I could just take a picture of his side by side view, so I hope this will come across OK. This is the shot that is priceless to me.
The first picture is the before, and the one next to it is post surgery. The red circle shows the top of the spine that is poking in to the brain stem Notice how much straighter it is in the second picture. Also you can tell that the indent into the brain stem is no longer present.
The black circle shows where the Chiari malformation is. In the first picture you can see, if you look closely, how the brain tonsils (bottom material of the brain) descends down and is pressed between the spinal cord and the cervical plates. In the second picture the tonsils have risen back up and is no longer compressed or pressing against the spinal cord.
The blue circle is around a small triangular area that Dr. Alden used to show us some distance markers. I know it has more significance than what I can explain, but this is as far as my understanding could go. In the first picture the top of the spine presses right up against the triangular space. The second picture shows that the triangular area is now a full centimeter away from the spine.
Here is the side by side without marks so you can see it a little clearer.
On a funny side note, the medical records show that in about a 3 week period from before to after surgery, Sam gained just over a 1/2 inch of height. They definitely accomplished stretching things out!
Last, I am happy to share that we have no explanation, but Sam's apnea numbers that have not been good since arriving home, have continued to lower slowly. The last two nights have been low enough that they are considered to be within acceptable limits. We don't know why they went up, and we don't know why they are going down, but I am choosing to simply thank God that He has continued to keep His mighty hand on us. Sam's spirits are continuing to improve as well. He is choosing to pursue interests a little more readily, and is starting to look forward to getting re-involved in regular activities at home and with friends. Thank you again for your prayers on these issues. At this point we will continue to pray for good solid bone growth and that in the meantime his alignment stays looking good. We return to Chicago for his next followup in three weeks. I will look forward to updating you on his progress at that time, unless anything comes up to share beforehand. Thanks again everyone.
Friday, September 16, 2011
9/16/2011 - How is Sam doing?
I have been asked a number of times how we are doing, so I thought I better write a quick update. Sam is doing quite well physically since we arrived home. He can walk around the block with no support (just a ready arm incase of a stumble.) He has gotten really good at getting in and out of bed on his own and has even started unconsiously started to roll on his side when sleeping. His pain is becoming more tolerable everyday, and we should be able to go entirely with plain extra strength tylenol and drop his narcotic pain meds in the next couple days. He is able to do more and more on his own every day.
We will be getting a drafting table on loan today to help him prop books and paper for reading and writing. This should help us start getting back into school work a bit more next week. I believe getting back some more normalcy, such as school will be good for him. He is having more times of better spirits, but is still sad and remote often as well. I have started to push a little more to encourage him to do things that are different such as go to a store, go for a walk, go downstairs, play a game with us. It really is getting much better, however, and I can see my Sam shining through again here and there. Part of it is that he is a bit of an introvert, and everywhere we go he gets all sorts of attention and questions. It makes him fairly uncomfortable.
As far as an immediate prayer concern, I would appreciate it if you would pray that we get Sam’s Apnea numbers under control. Our CPAP (the machine that keeps him from stopping breathing overnight) tell us how many times he does stop. His numbers were fine in the hospital, but have been high since we have been home. Needless to say, I am concerned about this. I am working with his neurologist to figure out why, but at this point they have decided the machine is working correctly. So it is either a problem with needing new setting, or a new problem with Sam’s breathing. They have done an overnight monitoring of his oxygen levels and pulse and have found both to be fine, so that is good, it is just unnerving to have those numbers high. Please pray that we could resolve this issue quickly.
We have a follow-up appointment in Chicago this Monday the 19th. They will take x-rays to see that everything is healing well and still aligned as desired. So far, his incision looks great. Dry as a bone which indicates no leaking spinal fluid. Praise God!
Please feel free to use my e-mail or facebook account to wish Sam a happy 11th birthday this Sunday the 18th. I know it will not be quite the circumstances he would like for celebrating, but I know he will enjoy hearing from everyone. I know I will be celebrating by thanking God for Sam and His plan for his life.
We will be getting a drafting table on loan today to help him prop books and paper for reading and writing. This should help us start getting back into school work a bit more next week. I believe getting back some more normalcy, such as school will be good for him. He is having more times of better spirits, but is still sad and remote often as well. I have started to push a little more to encourage him to do things that are different such as go to a store, go for a walk, go downstairs, play a game with us. It really is getting much better, however, and I can see my Sam shining through again here and there. Part of it is that he is a bit of an introvert, and everywhere we go he gets all sorts of attention and questions. It makes him fairly uncomfortable.
As far as an immediate prayer concern, I would appreciate it if you would pray that we get Sam’s Apnea numbers under control. Our CPAP (the machine that keeps him from stopping breathing overnight) tell us how many times he does stop. His numbers were fine in the hospital, but have been high since we have been home. Needless to say, I am concerned about this. I am working with his neurologist to figure out why, but at this point they have decided the machine is working correctly. So it is either a problem with needing new setting, or a new problem with Sam’s breathing. They have done an overnight monitoring of his oxygen levels and pulse and have found both to be fine, so that is good, it is just unnerving to have those numbers high. Please pray that we could resolve this issue quickly.
We have a follow-up appointment in Chicago this Monday the 19th. They will take x-rays to see that everything is healing well and still aligned as desired. So far, his incision looks great. Dry as a bone which indicates no leaking spinal fluid. Praise God!
Please feel free to use my e-mail or facebook account to wish Sam a happy 11th birthday this Sunday the 18th. I know it will not be quite the circumstances he would like for celebrating, but I know he will enjoy hearing from everyone. I know I will be celebrating by thanking God for Sam and His plan for his life.
9/16/2011 - A Summary
It was recently mentioned that if you have not followed from the beginning that figuring out "the basics" of what is going on could be a little overwhelming. So I wrote the following summary of Sam's situation and surgery.
We discovered that Sam has sleep apnea almost a year ago. This past spring it was determined that instead of obstructive (the common something is blocking your breathing) he had central apnea (your brain fails to tell you to breath). This is rare in children and non-existent in healthy children. This and some other things the neurologist noticed prompted her to send Sam for an MRI. They found 3 things.
1) A Chiari Malformation – this is where the tonsils in the back of the brain hang down too far and descend below the skull.
2) Some skeletal abnormalities – his skull is small and slightly misshaped.
3) A basiliar invagination – This is when the top of the spine “pokes” into the brain stem.
These things together were causing a great deal of compression to Sam’s brain stem and causing it enough stress to result in the central sleep apnea. The doctor indicated that it was likely this already caused some permanent damage (ie- Sam’s really bad and uneven eyesight, speech delays, some motor delays when he was younger). Most doctors indicated that they could not believe the child sitting in front of them was the one they were seeing on the MRI, and that he should have already been way worse off. The major concern was that to leave it as it was it would continue to pressure the brain stem and cause further damage. The most significant risk was that given more time or the wrong bump to the head, Sam would lose his ability to swallow or breath on his own. The doctors (many of them) agreed that it was very dangerous to leave this untreated for any amount of time.
The surgery Sam had included:
1) Traction – to pull the spine out of invading the brain stem.
2) Cervical fusion – fusing his skull to a cervical plate in the position the traction achieved so the spine would not sink into the brain stem again. This results in Sam having lost about 90% of the side to side and up and down rotation of his neck.
3) Brain Decompression – They shave off the bottom of his skull to allow more room for the herniated brain that hangs down.
4) Duraplasty – They cut a small triangular section of the back side of the skull out to provide even more room when the decompression is not enough. This is the real “brain surgery” part of it as it meant that the brain needed to be separated from the membrane surrounding it. They then cover the exposed area of the brain with a protective membrane.
He is recovering pretty well. Sam has to wear a hard collar for the next 3 months while the fusion heals and bone grows around the titanium hardware they placed. I know that we will probably come up on some more emotional hardship for Sam as the reality of his loss of mobility sets in, but we are taking it day by day and it is going as well as I could expect. We thank God for protection of Sam's brain up until now, that we found the condition before it was too late, and for the success of the surgical intervention, and pray that Sam would continue to heal well, and that God would use this as a blessing to Sam and others.
Thursday, September 8, 2011
9/8/2011 - Home Sweet Home
Well, we are home. We were discharged from the hospital about 2:00 pm today. The pair of nurses that saw us in a week and a half ago were are nurses today to see us out. We had everything ready in anticipation so all we had to do was walk to the car. And yes, Sam walked to the car. To him, at this time, that was a pretty long walk, and he managed it beautifully with only a little support from me. The nurses grinned and waved goodbye. The ladies at the various registration tables that have seen me walk by a dozen times a day for the last 11 days smiled and said how great he looked. Everyone there celebrates when a child heads out the door.
Sam tolerated the ride fantastically. We expected him to need a few stops, but when asked he continued to say he felt fine. He dozed a little, and listened to a little Hank the Cowdog on my IPod. Thanking God his pain level was minimal the whole way home.
We returned to our house feeling just as well supported as we have through this entire journey. Here is what Sam found to greet him.
Bread, flowers, and a stocked refrigerator. The food carried over to even more items on the counter, freezer, and cabinets. Thank you food fairy! Shortly after, I had a hot meal delivered ready to eat. I am blessed to have yet another friend organizing meals for us for a bit while Sam's care will be hardest. Thank you my dear friends. You are a gifts from God.
Yep, right back to Legos. I praise my Lord and Savior, Jesus Christ, for the restoration I am seeing daily in Sam's body and spirit. He has carried us this far and I trust Him to keep us fully in His hands as he works out His plan.
This will probably be the last post for a little. We go for followup x-rays and exam in about two weeks. Please pray that Sam will continue to heal and adjust. Pray that Nathan will understand the importance of not leaving toys to trip over and not tackling Sam (one of his favorite things).
Praise God for...I am not sure where to begin - friends, family, healing, hope, His perfect will, saving grace...everything.
Sam tolerated the ride fantastically. We expected him to need a few stops, but when asked he continued to say he felt fine. He dozed a little, and listened to a little Hank the Cowdog on my IPod. Thanking God his pain level was minimal the whole way home.
We returned to our house feeling just as well supported as we have through this entire journey. Here is what Sam found to greet him.
The second picture is hard to tell, but he has balloons, a cool banner that lots of friends signed, and is putting together a nerf gun bought for him by a friend.
I also had some surprises that made my day.
Bread, flowers, and a stocked refrigerator. The food carried over to even more items on the counter, freezer, and cabinets. Thank you food fairy! Shortly after, I had a hot meal delivered ready to eat. I am blessed to have yet another friend organizing meals for us for a bit while Sam's care will be hardest. Thank you my dear friends. You are a gifts from God.
Sam is doing well. I have told him his job is to eat, rest, play, and tell us absolutely everything that is not working for him in the house so we can adapt it. He has settled in nicely so far.
Yep, right back to Legos. I praise my Lord and Savior, Jesus Christ, for the restoration I am seeing daily in Sam's body and spirit. He has carried us this far and I trust Him to keep us fully in His hands as he works out His plan.
This will probably be the last post for a little. We go for followup x-rays and exam in about two weeks. Please pray that Sam will continue to heal and adjust. Pray that Nathan will understand the importance of not leaving toys to trip over and not tackling Sam (one of his favorite things).
Praise God for...I am not sure where to begin - friends, family, healing, hope, His perfect will, saving grace...everything.
Wednesday, September 7, 2011
9/7/2011 - No IV Tube
Today has been a really encouraging day. Sam was still having a great deal of head pain this morning, but once we got through that he did his exercises, took a walk, and ate an entire go-gurt, two small grape juices and most of one Pop-tart. Biggest meal yet. I requested a protein supplement for him today and they sent down a nutritionist who agreed that was a good idea. Sam is still having trouble chewing due to jaw pain from both the traction and now getting used to the collar, so he prefers soft food at the moment. While that starts to heal he will get a calorie and protein boost from the powder. I mixed it with another chocolate shake. (Good thing we see the dentist in Oct. after all the liquid sugar he has consumed).
He was awake longer than ever this morning and enjoyed some one-liners that grandma read from a joke book a friend sent, and even chuckled at most of them. He gets irritable at times with the pain and the work, but irritable is an improvement over the blankness of the past days. Overall, his spirits are greatly improved.
Sam had an x-ray this afternoon. I believe it is the last check that everything is well aligned before we leave. Next ones will be when we come back for a follow-up in about 2 weeks. I just obtained my copy of all the CTs, x-rays, and MRI's that have been done here yesterday, so I should have known they would sneak in one more today.
About 1:30 today they disconnected his IV morphine pump. He began his new oral pain med at the same time. I think I can already tell what an improvement it is to his grogginess. They have to leave the IV in his arm the rest of the day "just in case" but we are all thrilled that it has a saline stop and is hanging loose instead of hooked up to anything. The feeling of freedom makes me heady, I can only imagine how good it feels to Sam. He still has to be hooked to all the vitals until we leave, but those are easy to disconnect for walks, etc. This is the last step we are aware of to going home, so I believe they will make sure his pain is controlled on the new med, do any last minute PT/OT, and then let us go maybe tomorrow or Friday. Hooray!
This morning Sam and I had a long talk about how sometimes when it is the hardest to feel thankful is when we most need to remind ourselves of everything we have to be thankful for. We talked about how hard everything is that he is going through, and how hard it is to deal with the pain. Then we talked about the fact that he was coming to a place where he had a choice to make. He could choose to hold on to sadness and not let any joy infiltrate his pain, or he could choose to appreciate the small moments that tempt him to smile now and then, in spite of the pain. We took turns sharing what we were grateful for. He was grateful that he gets to go home soon. I was grateful for the people who have prayed for us and sent their love and support in many ways. I asked Sam what else he was grateful for. His answer, "I am grateful that God is in control." Amen, Sam. Amen. Praise God.
He was awake longer than ever this morning and enjoyed some one-liners that grandma read from a joke book a friend sent, and even chuckled at most of them. He gets irritable at times with the pain and the work, but irritable is an improvement over the blankness of the past days. Overall, his spirits are greatly improved.
Sam had an x-ray this afternoon. I believe it is the last check that everything is well aligned before we leave. Next ones will be when we come back for a follow-up in about 2 weeks. I just obtained my copy of all the CTs, x-rays, and MRI's that have been done here yesterday, so I should have known they would sneak in one more today.
About 1:30 today they disconnected his IV morphine pump. He began his new oral pain med at the same time. I think I can already tell what an improvement it is to his grogginess. They have to leave the IV in his arm the rest of the day "just in case" but we are all thrilled that it has a saline stop and is hanging loose instead of hooked up to anything. The feeling of freedom makes me heady, I can only imagine how good it feels to Sam. He still has to be hooked to all the vitals until we leave, but those are easy to disconnect for walks, etc. This is the last step we are aware of to going home, so I believe they will make sure his pain is controlled on the new med, do any last minute PT/OT, and then let us go maybe tomorrow or Friday. Hooray!
This morning Sam and I had a long talk about how sometimes when it is the hardest to feel thankful is when we most need to remind ourselves of everything we have to be thankful for. We talked about how hard everything is that he is going through, and how hard it is to deal with the pain. Then we talked about the fact that he was coming to a place where he had a choice to make. He could choose to hold on to sadness and not let any joy infiltrate his pain, or he could choose to appreciate the small moments that tempt him to smile now and then, in spite of the pain. We took turns sharing what we were grateful for. He was grateful that he gets to go home soon. I was grateful for the people who have prayed for us and sent their love and support in many ways. I asked Sam what else he was grateful for. His answer, "I am grateful that God is in control." Amen, Sam. Amen. Praise God.
Tuesday, September 6, 2011
9/6/2011 - Physical Therapy
Sam worked really hard today. He walked farther than he has previously. He has eaten a little more, and sat up for longer periods of time. He is struggling with pain a bit with all this activity, especially because they turned off his continuous Morphine drip. He still can press his button to get it on demand, however. The goal to go home is being off the Morphine entirely and feeling he can walk and get in and out of bed a little more independently. All these things have to balance with him not being in TOO much pain. Overall, things are going well and we are hopeful that we can go home this week.
Physical Therapy and Occupational Therapy came by today. They made Sam really push himself to be able to do some daily activities on his own. They provided some help on getting out of bed, brushing his teeth, and other mundane activities that he needs to work back up to. They helped me learn how to help him regain the strength for these as well as gave me lots of input on helping with other activities such as reading and writing while in the hard collar as well as after because of his limitations with the fusion. The time with OT/PT has brought home to us exactly how many adjustments are going to need to be made. We have a lot of work ahead of us at home.
I spoke to Sam's surgeon this morning as well. He showed me the post-op MRI which I had not seen yet. He showed me a comparison between that, the post traction MRI, and the pre-hospital MRI. The difference is really remarkable. It gave me a much rounder view of exactly how compressed his brain stem was to begin with. Prior to the surgery, the doctor had explained to me that sometimes you lose a little ground from traction to surgery because things settle. Much to my joy he pointed out that we actually gained space from traction to surgery. He said it was even a better result than he had anticipated. The Doctor indicated that if we had X chance of needing trans-nasal surgery in the future we had reduced that to 1/100th of that chance. Praise God!
Sam was needing rest at the time, but there was a special visitor to the hospital today. He left a gift for Sam.
The signature is from Cubs player John Grabow. He signed it specifically to Sam. Sam didn't mind missing him because he not really a sports fan, but it was a nice thing for him to be able to take home.
Please pray that Sam would continue to feel encouraged and continue to press forward through this hard time, and not feel discouraged when it is slow and hard. Also, that his pain would reduce and be easier to deal with. I think being home will raise his spirits and make moving around and sleeping well much easier.
Praise God that each day gets a little better now, and for such a fantastic outcome to Sam's surgery, even more than the Dr. had hoped for. "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within." Ephesians 3:20 We thank the Lord for continuing to carry us through this according to His good will and plan.
Thank you all so much for the messages, cards, pictures and other creative items you have sent Sam. It is really a high for him and continues to remind him that there is a world outside these four walls. Many blessing to you all.
Physical Therapy and Occupational Therapy came by today. They made Sam really push himself to be able to do some daily activities on his own. They provided some help on getting out of bed, brushing his teeth, and other mundane activities that he needs to work back up to. They helped me learn how to help him regain the strength for these as well as gave me lots of input on helping with other activities such as reading and writing while in the hard collar as well as after because of his limitations with the fusion. The time with OT/PT has brought home to us exactly how many adjustments are going to need to be made. We have a lot of work ahead of us at home.
I spoke to Sam's surgeon this morning as well. He showed me the post-op MRI which I had not seen yet. He showed me a comparison between that, the post traction MRI, and the pre-hospital MRI. The difference is really remarkable. It gave me a much rounder view of exactly how compressed his brain stem was to begin with. Prior to the surgery, the doctor had explained to me that sometimes you lose a little ground from traction to surgery because things settle. Much to my joy he pointed out that we actually gained space from traction to surgery. He said it was even a better result than he had anticipated. The Doctor indicated that if we had X chance of needing trans-nasal surgery in the future we had reduced that to 1/100th of that chance. Praise God!
Sam was needing rest at the time, but there was a special visitor to the hospital today. He left a gift for Sam.
The signature is from Cubs player John Grabow. He signed it specifically to Sam. Sam didn't mind missing him because he not really a sports fan, but it was a nice thing for him to be able to take home.
Please pray that Sam would continue to feel encouraged and continue to press forward through this hard time, and not feel discouraged when it is slow and hard. Also, that his pain would reduce and be easier to deal with. I think being home will raise his spirits and make moving around and sleeping well much easier.
Praise God that each day gets a little better now, and for such a fantastic outcome to Sam's surgery, even more than the Dr. had hoped for. "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within." Ephesians 3:20 We thank the Lord for continuing to carry us through this according to His good will and plan.
Thank you all so much for the messages, cards, pictures and other creative items you have sent Sam. It is really a high for him and continues to remind him that there is a world outside these four walls. Many blessing to you all.
Monday, September 5, 2011
9/5/2011 - Walking
This is Greg with today's post as Kim is needing a day off. Please pray for encouragement for Kim as she has had a bit of a down day.
Sam has done well today. He continues to get stronger and stronger each day. The big accomplishment for Sam today has been getting three walks in and spending longer times out of bed sitting in a chair. His main out of bed activities today have been eating and playing Lego's.
Kim also reported that while I was out of the hospital at the Ronald McDonald House on some R&R time this afternoon that Sam scooted his own body over to the side of the bed without assistance.
Sam also had his first post-op laugh today. His friends from Bloomington Bible Church filmed a Star Wars themed video in the basement of our church. He really got a kick out of it. Thank you Pastor John and the RISC teens for bringing that joy to Sam today.
The main prayer requests at this point for Sam are for his pain to be controlled with less and less pain medication and for his strength to continue to increase each day. In order for Sam to be released later this week, he will need to transition from the on demand pain treatments to oral pain medication. He also has to be strong enough so the doctors feel comfortable that he can be mostly independently mobile.
The surgery site on the back of his head and neck continue to look good with no sign of infection or leaking cerebral fluid. This is a praise and an answer to prayer. Please pray that this continues.
Happy Labor Day to all. We pray that Jesus will touch your hearts as He has ours during this journey.
Sam has done well today. He continues to get stronger and stronger each day. The big accomplishment for Sam today has been getting three walks in and spending longer times out of bed sitting in a chair. His main out of bed activities today have been eating and playing Lego's.
Kim also reported that while I was out of the hospital at the Ronald McDonald House on some R&R time this afternoon that Sam scooted his own body over to the side of the bed without assistance.
Sam also had his first post-op laugh today. His friends from Bloomington Bible Church filmed a Star Wars themed video in the basement of our church. He really got a kick out of it. Thank you Pastor John and the RISC teens for bringing that joy to Sam today.
The main prayer requests at this point for Sam are for his pain to be controlled with less and less pain medication and for his strength to continue to increase each day. In order for Sam to be released later this week, he will need to transition from the on demand pain treatments to oral pain medication. He also has to be strong enough so the doctors feel comfortable that he can be mostly independently mobile.
The surgery site on the back of his head and neck continue to look good with no sign of infection or leaking cerebral fluid. This is a praise and an answer to prayer. Please pray that this continues.
Happy Labor Day to all. We pray that Jesus will touch your hearts as He has ours during this journey.
Sunday, September 4, 2011
9/4/2011 - Legos
Today has been a busy day here. Sam has spiked a fever a few times and did last night as well. They assured us this often happens after surgery and that they were not concerned. He is already on strong antibiotics to prevent infection anyway. They did take him this morning to get a chest x-ray and did a blood and urine sample to rule out infection of any sort. The chest and urine came back all clear and the blood takes a little longer. He has not had a fever again today so that is good. His congestion is better and Sam is working at his breathing exercises to help it improve further.
He had a decent night's sleep and his CPAP numbers were great again. His AHI was 0.2!! (See previous post for an explanation of this) He has gotten out of bed maybe a half dozen times. His body is still very weak and we are really having to push him to use his muscles and start regaining strength. Moving around is still a struggle. He is very sluggish. This morning we got him sitting up in bed and I told him I needed to have him try an activity that made him use his arms and fingers. I said he could even just squish around some clay if he wanted. Those of you who know Sam well will not be surprised that he asked if he could try to put together Lego people. He asked if I would show him the pictures so he knew what parts were supposed to go with what people, and then hand him the right parts. Needless to say I never found the right part he was asking for so he finally asked me to just make a pile of people parts in front of him and give him the instructions. Nothing can motivate a 10 year old boy to move like Lego's, huh?
Sam (and his dad and I) enjoyed having family visit this weekend. Nathan said he was glad that Sam's surgery was over so now he could play with him. I broke it to him gently that Sam might not quite be ready yet, but we had a good visit anyway.
He also asked if he could try sitting in a real chair. He sat there for a good bit and watched a movie. He managed to sit for maybe an hour before he wanted back in bed for a nap. This pleased everyone as it does take some muscles to sit upright that long, even though it seems passive.
Eating is also one of our tasks for the day. He was cleared for a liquid diet sometime last night and worked hard to get in Gatorade, water and juice. He did so well they cut his IV fluids in half today and cleared him for a full diet. He was pretty uninterested in eating, but we made it clear that wasn't really an option. He was told to pick anything he wanted and we would try it, even if he only took a few bites. His choice - McDonald's milkshake. So, I ran down and got him one. (I did say pick anything, right?) He drank a good 3/4 of it. Way to go Sam!
We made good progress today and I am thankful, but it was a hard day, too. More moving is necessary, but it also brings more pain. Sam is pretty sad and discouraged right now, and just really down about the whole ordeal. I really don't blame him. I would give a lot for him to want to smile or laugh. We are keeping him well occupied but nothing has sparked much interest in him. So prayers that Sam would feel some joy and find something to laugh and smile over.
Praise God that Sam's incision site looks good. It runs about 4 inches, from the back of his head to his neck. They watch it carefully because that will be the first sign if any spinal fluid begins to leak. It is dry and looks appropriate.
We continue to praise God for the small steps of progress that are made, and look forward with hope to returning home soon. Please pray that Sam would be encouraged keep on being brave and working hard. I pray that God would continue to provide him strength and courage, and that he would be able to get home and back to the things he loves as soon as possible. God is faithful, and I know in whatever comes He will continue to hold us in His strength.
He had a decent night's sleep and his CPAP numbers were great again. His AHI was 0.2!! (See previous post for an explanation of this) He has gotten out of bed maybe a half dozen times. His body is still very weak and we are really having to push him to use his muscles and start regaining strength. Moving around is still a struggle. He is very sluggish. This morning we got him sitting up in bed and I told him I needed to have him try an activity that made him use his arms and fingers. I said he could even just squish around some clay if he wanted. Those of you who know Sam well will not be surprised that he asked if he could try to put together Lego people. He asked if I would show him the pictures so he knew what parts were supposed to go with what people, and then hand him the right parts. Needless to say I never found the right part he was asking for so he finally asked me to just make a pile of people parts in front of him and give him the instructions. Nothing can motivate a 10 year old boy to move like Lego's, huh?
Sam (and his dad and I) enjoyed having family visit this weekend. Nathan said he was glad that Sam's surgery was over so now he could play with him. I broke it to him gently that Sam might not quite be ready yet, but we had a good visit anyway.
He also asked if he could try sitting in a real chair. He sat there for a good bit and watched a movie. He managed to sit for maybe an hour before he wanted back in bed for a nap. This pleased everyone as it does take some muscles to sit upright that long, even though it seems passive.
Eating is also one of our tasks for the day. He was cleared for a liquid diet sometime last night and worked hard to get in Gatorade, water and juice. He did so well they cut his IV fluids in half today and cleared him for a full diet. He was pretty uninterested in eating, but we made it clear that wasn't really an option. He was told to pick anything he wanted and we would try it, even if he only took a few bites. His choice - McDonald's milkshake. So, I ran down and got him one. (I did say pick anything, right?) He drank a good 3/4 of it. Way to go Sam!
We made good progress today and I am thankful, but it was a hard day, too. More moving is necessary, but it also brings more pain. Sam is pretty sad and discouraged right now, and just really down about the whole ordeal. I really don't blame him. I would give a lot for him to want to smile or laugh. We are keeping him well occupied but nothing has sparked much interest in him. So prayers that Sam would feel some joy and find something to laugh and smile over.
Praise God that Sam's incision site looks good. It runs about 4 inches, from the back of his head to his neck. They watch it carefully because that will be the first sign if any spinal fluid begins to leak. It is dry and looks appropriate.
We continue to praise God for the small steps of progress that are made, and look forward with hope to returning home soon. Please pray that Sam would be encouraged keep on being brave and working hard. I pray that God would continue to provide him strength and courage, and that he would be able to get home and back to the things he loves as soon as possible. God is faithful, and I know in whatever comes He will continue to hold us in His strength.
Saturday, September 3, 2011
9/3/2011 - Day after Surgery
Sam is doing very well today. He is resting a lot and has a Morphine pump that he can control. He is able to keep the worst of the pain at bay, and it is enough to be able to sleep. He looked pretty good right from the get go last night when we were able to see him. He even asked me at about 9:00pm last night if I would read a chapter of his book to him. I told him there was nothing that would make me happier.
Since I was pretty quick yesterday I will sum up a few surgery details. The surgery lasted 7 hours and Sam's vitals remained great throughout. The doctor spoke to us to go over everything that took place. He indicated that as far as the space that was necessary to decompress they could have fused to the C2. However, they have equipment that can load Sam's last CT scan and it can be used to do virtual surgery so the doctor can "try things out" prior to doing them. He tried every scenario he could to fuse to the C2 and could not get a satisfactory position for the screws and plates. He said Sam's individual anatomy was such that there was no good location. If he had gone ahead with it the screws would not have been a stable as he would like for a successful outcome. In going to the C3 vertebrae he said he got a beautiful strong hold. In general people lose about 85% of their rotation when fusing to the C2 and Sam will lose about another 5% by going to the C3.
On the skull decompression, he indicated that Sam's flow of spinal fluid was "borderline" with just the removal of the bottom of the skull. He said that in the end he was not comfortable with it being successful long term at that level and made the decision to do the duraplasty as well. (This is where they have to cut up the skull a little further, and need to separate it from brain membrane in order to remove a small portion. They then cover it with a protective membrane.) The risks of this are that they are now working with brain tissue during the surgery, as well as the chance that there could be a leakage of spinal fluid. That risk should be over in about 2-4 weeks. On both this and the fusion length, I am convinced the doctor made the right choice. While it was not ideal to have either go that direction, I am happy that he made the choice that he felt most comfortable would be successful long term. I don't wish to do this again!
He thought the chances were good that we would need to leave Sam on a breathing tube overnight, causing him to need to stay sedated for that time period. Praising God that after the surgery, they made the determination that there had been no collapsing in his throat and the breathing tube came out immediately.
On Sam's first two sleep tests prior to getting his CPAP he had an AHI of 14-15. This means he would stop breathing every 4 minutes all night. On his CPAP, his AHI ranged from 4-5.5. This means he stopped breathing once every 12-15 minutes all night. The last two days of his traction his AHI was about 2.5, or stopping once every 25 minutes. Last night, post op night one Sam's AHI was 0.3!!! This means in the 9 hours he was wearing his CPAP last night he stopped breathing a total of 3 times. Once every 3 hours. That is the AHI of any average person. It may be that if those kind of numbers hold up he may (though may not) be able to discontinue his CPAP in a few months. Most of all we are praising God because what this shows us is his surgery was successful. The nuero associate that visited this morning said he had hoped for good improvement after several days, and was pretty impressed at this immediate result.
Prayers for Sam today include managing pain and helping him get through a couple of big hurdles. They would like him to sit up and he is quite reluctant, knowing that this will cause more pain that just laying flat. He has been incredibly brave and it is so hard to ask him to keep going, but I think he will start to feel bolder after he moves a few times.
He also has pretty labored breathing right now. They believe it is due to the weakness and congestion of his lungs after being down so long and then topped of with such invasive long surgery. Once again it is imperative that he start to get upright a bit, and they will not let him put it off any longer than this afternoon.
Prayers as well that spinal fluid would not leak, or any kind of infections set in.
On the praise side, most importantly that his surgery went well, and that my Sam is doing as well as possible. Praise God for the wisdom of all the decisions the doctor made and for guiding his hands. I know I have thanked God and you all often for your prayers, but I need to let you know exactly how overwhelming your support has been to us. We have received around 20-30 emails, messages, or comments every day, yesterday way more, I couldn't even tell you. Some of them from people I don't know. Many from people I haven't known for years. This morning I took a look at the page views the blog had through out yesterday. I am on the edge of tears as I tell you that 1,100 times you all stopped in your day to check on us. That kind of support from loved ones and strangers alike staggers me. I truly praise the God of all strength for the wealth of prayers that helped hold our family up yesterday. I will praise God for you the rest of my life. Thank you.
Since I was pretty quick yesterday I will sum up a few surgery details. The surgery lasted 7 hours and Sam's vitals remained great throughout. The doctor spoke to us to go over everything that took place. He indicated that as far as the space that was necessary to decompress they could have fused to the C2. However, they have equipment that can load Sam's last CT scan and it can be used to do virtual surgery so the doctor can "try things out" prior to doing them. He tried every scenario he could to fuse to the C2 and could not get a satisfactory position for the screws and plates. He said Sam's individual anatomy was such that there was no good location. If he had gone ahead with it the screws would not have been a stable as he would like for a successful outcome. In going to the C3 vertebrae he said he got a beautiful strong hold. In general people lose about 85% of their rotation when fusing to the C2 and Sam will lose about another 5% by going to the C3.
On the skull decompression, he indicated that Sam's flow of spinal fluid was "borderline" with just the removal of the bottom of the skull. He said that in the end he was not comfortable with it being successful long term at that level and made the decision to do the duraplasty as well. (This is where they have to cut up the skull a little further, and need to separate it from brain membrane in order to remove a small portion. They then cover it with a protective membrane.) The risks of this are that they are now working with brain tissue during the surgery, as well as the chance that there could be a leakage of spinal fluid. That risk should be over in about 2-4 weeks. On both this and the fusion length, I am convinced the doctor made the right choice. While it was not ideal to have either go that direction, I am happy that he made the choice that he felt most comfortable would be successful long term. I don't wish to do this again!
He thought the chances were good that we would need to leave Sam on a breathing tube overnight, causing him to need to stay sedated for that time period. Praising God that after the surgery, they made the determination that there had been no collapsing in his throat and the breathing tube came out immediately.
On Sam's first two sleep tests prior to getting his CPAP he had an AHI of 14-15. This means he would stop breathing every 4 minutes all night. On his CPAP, his AHI ranged from 4-5.5. This means he stopped breathing once every 12-15 minutes all night. The last two days of his traction his AHI was about 2.5, or stopping once every 25 minutes. Last night, post op night one Sam's AHI was 0.3!!! This means in the 9 hours he was wearing his CPAP last night he stopped breathing a total of 3 times. Once every 3 hours. That is the AHI of any average person. It may be that if those kind of numbers hold up he may (though may not) be able to discontinue his CPAP in a few months. Most of all we are praising God because what this shows us is his surgery was successful. The nuero associate that visited this morning said he had hoped for good improvement after several days, and was pretty impressed at this immediate result.
Prayers for Sam today include managing pain and helping him get through a couple of big hurdles. They would like him to sit up and he is quite reluctant, knowing that this will cause more pain that just laying flat. He has been incredibly brave and it is so hard to ask him to keep going, but I think he will start to feel bolder after he moves a few times.
He also has pretty labored breathing right now. They believe it is due to the weakness and congestion of his lungs after being down so long and then topped of with such invasive long surgery. Once again it is imperative that he start to get upright a bit, and they will not let him put it off any longer than this afternoon.
Prayers as well that spinal fluid would not leak, or any kind of infections set in.
On the praise side, most importantly that his surgery went well, and that my Sam is doing as well as possible. Praise God for the wisdom of all the decisions the doctor made and for guiding his hands. I know I have thanked God and you all often for your prayers, but I need to let you know exactly how overwhelming your support has been to us. We have received around 20-30 emails, messages, or comments every day, yesterday way more, I couldn't even tell you. Some of them from people I don't know. Many from people I haven't known for years. This morning I took a look at the page views the blog had through out yesterday. I am on the edge of tears as I tell you that 1,100 times you all stopped in your day to check on us. That kind of support from loved ones and strangers alike staggers me. I truly praise the God of all strength for the wealth of prayers that helped hold our family up yesterday. I will praise God for you the rest of my life. Thank you.
Friday, September 2, 2011
9/2/2011 - Out of Surgery
Sam got out of surgery at 5:30pm. He is doing well. My computer battery has died so this will be brief. The basics are that they did the duraplasty, they ended up needing to fuse down to the C3 vertebra to get a solid setting for the screws. He will lose maybe an additional 5% mobility because of this, but the doctor said it was necessary for a solid strong setting. Sam's throat was strong, and they were able to remove his breathing tube right away, which they thought might stay in until tomorrow, so that is a praise. The doctor is very happy with the results, and said Sam did great throughout. Please pray that there will be no spinal fluid leakage, or other complications. Please also pray that his pain will be well controlled. Thank you for walking through this long hard day with us. We are praising God for a good outcome.
9/2/2011 - Surgery Continues 4:30 pm update
We (Kim and I) received another update from the OR. It was necessary for Dr. Alden to do the duraplasty into the cerebral lining. Not what we wanted but it is what it is. Please pray for no additional complications from this necessary step.
The surgery is expected to take at least another hour and half. They are still working on installing the fusion hardware and completing the fusion. Please continue to pray for Dr. Alden and the other staff as they are nearing the end of Sam's almost 8 hour surgery. Pray for Sam to be strong. I told him when he went in that Jesus, Foxie (his stuffed red fox that went in with him), and the doctors would take care of him until mom and dad could be back with him. The Lord has Sam in his loving hands right now.
The surgery is expected to take at least another hour and half. They are still working on installing the fusion hardware and completing the fusion. Please continue to pray for Dr. Alden and the other staff as they are nearing the end of Sam's almost 8 hour surgery. Pray for Sam to be strong. I told him when he went in that Jesus, Foxie (his stuffed red fox that went in with him), and the doctors would take care of him until mom and dad could be back with him. The Lord has Sam in his loving hands right now.
9/2/2011 - Surgery continuing
Just received an update from the OR at 2:15. Sam is doing well. They have finished the part of the decompression where the bottom edge of the skull is removed. They had a lot of the hardware in place for his neck fusion. They have to finish placing the rods and thought that could take a couple hours yet. After the hardware is in place they will monitor the flow of Sam's spinal fluid and make the determination on whether or not they need to do the duraplasty (the next step in decompression where they angle up and remove a portion of the skull further up to provide more room for the brain, then cover it with a protective membrane). Continue to pray with us that this will not be necessary, as it carries additional risks in surgery and recovery. Thank you for continued prayers.
9/2/2011 - Surgery Underway
This is a quick post by Greg to let everyone know that Sam's surgery is underway. Kim and I stayed with him in the pre-op area until they took Sam to the OR about 10:30 am. Dr. Alden indicated that the surgery would last about 5 hours so until about 3:30 pm CST.
Dr. Alden had presented Sam's case to a panel of several spine surgeons and several neurosurgeons. The panel of surgeons concurred that the movement from the traction this week had been remarkable and that no further benefit could be gained by further traction.
Dr. Alden expressed his confidence in Sam's procedure today which gave us confidence.
Please pray for Sam for the surgery for the next few hours and for the recovery after that. Pray specifically for God's will and that the decompression with out duraplasty would be successful. The duraplasty (going into the brain covering) adds risk and potential complications.
We have a saying in our Ringle family that comes from the Facing the Giants movie. We praise God in good times and we praise God in bad times. Either way we praise God.
Praise the Lord with us and pray hard with us.
Dr. Alden had presented Sam's case to a panel of several spine surgeons and several neurosurgeons. The panel of surgeons concurred that the movement from the traction this week had been remarkable and that no further benefit could be gained by further traction.
Dr. Alden expressed his confidence in Sam's procedure today which gave us confidence.
Please pray for Sam for the surgery for the next few hours and for the recovery after that. Pray specifically for God's will and that the decompression with out duraplasty would be successful. The duraplasty (going into the brain covering) adds risk and potential complications.
We have a saying in our Ringle family that comes from the Facing the Giants movie. We praise God in good times and we praise God in bad times. Either way we praise God.
Praise the Lord with us and pray hard with us.
Thursday, September 1, 2011
9/1/2011 - update
As Greg reported in the last blog we are very relieved that we will be able to go ahead with surgery tomorrow. It was looking unlikely for a while. This news along with my mandatory "away time" has left me feeling much better than I did yesterday.
Last night Sam had the heated coil on his CPAP and this helped tremendously. No more panicked waking because of condensation spiting at him. The halter being further cut has also helped his ears quite a bit. They are still very tender, but it is definitely better. I am really grateful that we will not have to do this any longer after tomorrow. I was not sure how much longer I could stand to put him through this. I also later got to view the MRI that Greg saw this morning and the difference is really pretty remarkable. It was helpful to be able to see what the last week has accomplished.
While I am so relieved and grateful, it is starting to settle in that now we face the major surgery. Sam is glad that we are going to be done with traction, but he admits to being scared of what to expect, both waking up from the surgery and recovery, and what it will be like with his neck fused. After talking it through a little, we are making sure he knows how many people are praying for him, our confidence in the care he is being provided, and beyond that trying to help him pass the day as easily as we can.
I have been made aware of the fact that there are many, many people praying for us. While I began this blog to let my friends and family to let them know what was happening, so many of them have passed on the link to friends and prayer groups. To those of you who don't even know us but are praying for us, I thank you and praise God for your compassion. A pastor at my church preached a very meaningful service soon before we left. He covered a good portion of Philippians 1. The following verse sticks out when I think of everyone who has been in prayer for us.
Philippians 1:19 - for I know that through your prayers and God’s provision of the Spirit of Jesus Christ what has happened to me will turn out for my deliverance.
In short I know that the prayers of God's people has encouraged us in such a way that our family has been able to have courage and remain standing as the good will of God is worked out in our lives. Thank you for keeping us lifted up.
Please join us in our praise that we can go to surgery tomorrow and our prayers that it will be as conservative as possible, and that Sam would maintain as much neck mobility as possible. Also, please pray that Sam would feel an unfathomable peace for this next part of the journey, and that his burden would not be heavy. Thanks again.
Last night Sam had the heated coil on his CPAP and this helped tremendously. No more panicked waking because of condensation spiting at him. The halter being further cut has also helped his ears quite a bit. They are still very tender, but it is definitely better. I am really grateful that we will not have to do this any longer after tomorrow. I was not sure how much longer I could stand to put him through this. I also later got to view the MRI that Greg saw this morning and the difference is really pretty remarkable. It was helpful to be able to see what the last week has accomplished.
While I am so relieved and grateful, it is starting to settle in that now we face the major surgery. Sam is glad that we are going to be done with traction, but he admits to being scared of what to expect, both waking up from the surgery and recovery, and what it will be like with his neck fused. After talking it through a little, we are making sure he knows how many people are praying for him, our confidence in the care he is being provided, and beyond that trying to help him pass the day as easily as we can.
I have been made aware of the fact that there are many, many people praying for us. While I began this blog to let my friends and family to let them know what was happening, so many of them have passed on the link to friends and prayer groups. To those of you who don't even know us but are praying for us, I thank you and praise God for your compassion. A pastor at my church preached a very meaningful service soon before we left. He covered a good portion of Philippians 1. The following verse sticks out when I think of everyone who has been in prayer for us.
Philippians 1:19 - for I know that through your prayers and God’s provision of the Spirit of Jesus Christ what has happened to me will turn out for my deliverance.
In short I know that the prayers of God's people has encouraged us in such a way that our family has been able to have courage and remain standing as the good will of God is worked out in our lives. Thank you for keeping us lifted up.
Please join us in our praise that we can go to surgery tomorrow and our prayers that it will be as conservative as possible, and that Sam would maintain as much neck mobility as possible. Also, please pray that Sam would feel an unfathomable peace for this next part of the journey, and that his burden would not be heavy. Thanks again.
9/1/2011 - Surgery Tomorrow
This is Greg again posting as I have sent Kim out of the hospital on a mandatory several hour mental health break.
Good news to report this morning. Sam's neurosurgeon, Dr. Alden, was here to make more modifications to Sam's head harness to provide further relief to his ears. Sam continued to be in pain last night. The ears look to be freed up from the pressure so we'll see how it feels when Sam wakes up.
During Dr. Alden's visit we discussed the progress of the traction. He indicated that enough progress has been made to go forward with the Chiari decompression and spinal fusion in the morning. Praise God. He showed me the before MRI and the MRI that was done yesterday. Even with my laymen eyes I could see the differences in the area where the space was needed. Dr. Alden had measured a 2 millimeter difference which doesn't sound like a lot but in the tiny areas in Sam's brain it is notable. He indicated that additional traction through a halo would mostly likely not provide any more significant room.
The surgery will be during the second rotation of surgeries tomorrow morning. This means that Sam will be the second surgery but the time depends on how long the first surgery takes. It will most likely be around 10:00 am tomorrow morning.
We are feeling thankful for all our prayer warriors out there. The battle belongs to the Lord but we must take up our weapons (the word of God, Ephesians 6) and fight through prayers and faith.
We will post another post later in the day but this news was too good to keep until then.
Good news to report this morning. Sam's neurosurgeon, Dr. Alden, was here to make more modifications to Sam's head harness to provide further relief to his ears. Sam continued to be in pain last night. The ears look to be freed up from the pressure so we'll see how it feels when Sam wakes up.
During Dr. Alden's visit we discussed the progress of the traction. He indicated that enough progress has been made to go forward with the Chiari decompression and spinal fusion in the morning. Praise God. He showed me the before MRI and the MRI that was done yesterday. Even with my laymen eyes I could see the differences in the area where the space was needed. Dr. Alden had measured a 2 millimeter difference which doesn't sound like a lot but in the tiny areas in Sam's brain it is notable. He indicated that additional traction through a halo would mostly likely not provide any more significant room.
The surgery will be during the second rotation of surgeries tomorrow morning. This means that Sam will be the second surgery but the time depends on how long the first surgery takes. It will most likely be around 10:00 am tomorrow morning.
We are feeling thankful for all our prayer warriors out there. The battle belongs to the Lord but we must take up our weapons (the word of God, Ephesians 6) and fight through prayers and faith.
We will post another post later in the day but this news was too good to keep until then.
Wednesday, August 31, 2011
8/31/2011 - Ear Flaps
The last few days have been emotionally draining so Kim is taking the day off from the blog and I (Greg) am reporting on the events of the day.
Today has seen several events to bring some comfort for Sam. During the middle of the night the last two nights, Sam has woke up in a panic due to gurgling water in his CPAP facemask. The gurgling water built up condensation in his facemask and was basically shooting water up his nose as he was trying to sleep.
The respiration manager today was able to rig up a heated CPAP tube similar to the one that Sam uses on his home CPAP machine. The heated hose keeps the water in heated vapor form and keep the condensation from building up. Please pray that this solution works for Sam tonight and the rest that Sam gets is better and not interruped by CPAP issues.
Another effort to bring comfort today was several hospital staff members getting creative to release the pressure on Sam's ears from the head harness. Sam had been in quite a bit of pain earlier today from his ears being smashed under the head harness. You can see from the picture below that the staff members cut holes in the head harness and also used some foam padding under the harness to make it softer against his ears.
Sam had a short MRI this morning also to make sure the pain that he was in was only from the ears and not something internal being caused by the traction. The doctors reported that everything was progressing well. They weren't willing to say how much progress has been made in comparison to what is needed. It is all in God's hands so pray hard for the movement that is needed to avoid halo traction.
Sam also had a visit from Grandma and Grandpa Nelson today who brought along Colin and Nathan. It was good for the family to be together for the couple of hours that they were here.
Sam has short periods of time where we get him off the traction and out of bed. He really enjoys these short breaks.
The Ronald McDonald House continues to bless us as Kim had a full night sleep there last night and I will this evening. Kim had a dinner last night there provided by the Notre Dame Club of Chicago and I will have dinner there tonight provided by another group. The house is a short 2 block walk to the hospital.
Please continue to pray for Sam for comfort as the pain has been off and on. Also, please pray that God would allow the halter traction to make the progress needed. Sam asked today how long the traction will last and it will break my heart even further to tell him that another more painful version of traction is needed.
Jesus knew Sam before he was born and has a grand plan in all this for His glory. We are just hanging on for dear life on the roller coaster ride that we are on.
Thanks for riding with us and providing love, support, friendship, and prayers.
Peace of Christ to you all.
Today has seen several events to bring some comfort for Sam. During the middle of the night the last two nights, Sam has woke up in a panic due to gurgling water in his CPAP facemask. The gurgling water built up condensation in his facemask and was basically shooting water up his nose as he was trying to sleep.
The respiration manager today was able to rig up a heated CPAP tube similar to the one that Sam uses on his home CPAP machine. The heated hose keeps the water in heated vapor form and keep the condensation from building up. Please pray that this solution works for Sam tonight and the rest that Sam gets is better and not interruped by CPAP issues.
Another effort to bring comfort today was several hospital staff members getting creative to release the pressure on Sam's ears from the head harness. Sam had been in quite a bit of pain earlier today from his ears being smashed under the head harness. You can see from the picture below that the staff members cut holes in the head harness and also used some foam padding under the harness to make it softer against his ears.
Sam had a short MRI this morning also to make sure the pain that he was in was only from the ears and not something internal being caused by the traction. The doctors reported that everything was progressing well. They weren't willing to say how much progress has been made in comparison to what is needed. It is all in God's hands so pray hard for the movement that is needed to avoid halo traction.
Sam also had a visit from Grandma and Grandpa Nelson today who brought along Colin and Nathan. It was good for the family to be together for the couple of hours that they were here.
Sam has short periods of time where we get him off the traction and out of bed. He really enjoys these short breaks.
The Ronald McDonald House continues to bless us as Kim had a full night sleep there last night and I will this evening. Kim had a dinner last night there provided by the Notre Dame Club of Chicago and I will have dinner there tonight provided by another group. The house is a short 2 block walk to the hospital.
Please continue to pray for Sam for comfort as the pain has been off and on. Also, please pray that God would allow the halter traction to make the progress needed. Sam asked today how long the traction will last and it will break my heart even further to tell him that another more painful version of traction is needed.
Jesus knew Sam before he was born and has a grand plan in all this for His glory. We are just hanging on for dear life on the roller coaster ride that we are on.
Thanks for riding with us and providing love, support, friendship, and prayers.
Peace of Christ to you all.
Tuesday, August 30, 2011
8/30/2011
Couple of events today. Sam ate pretty well and got over a little dehydration from last night. They were able to take him off IV fluids. He said today didn't feel quite as bad as yesterday. They approved putting him in the hard collar for just a few minutes at a time. With the hard collar fitted they can disconnect the weights of the traction and let him stand for a few minutes. He liked that a lot. He had some x-rays taken this morning and the doctor indicated that he saw some movement and thought it was going fine. He has ordered something more detailed than x-rays that will be taken Thursday, though I won't be surprised if they do x-rays again before then again.
While this is a place you truly don't want to have to be, the hospital does some amazing things to make it tolerable. They have a department specifically for that purpose. Today one of the specialists from there was playing a guitar and singing to the infant next door. They sent a magician up to Sam today which was really fun. I also got a free 15 minute massage today. Talk about a place where free massages are needed!
The Ronald House is very nice. Everyone is kind, and all residents are responsible for keeping it a pleasant atmoshere by cleaning after yourself, and following some simple rules of respect. Greg bought some groceries today that we can store there to defray some food costs. We started getting a few e-mails today for Sam and He enjoyed that. Thank you!!
While this is a place you truly don't want to have to be, the hospital does some amazing things to make it tolerable. They have a department specifically for that purpose. Today one of the specialists from there was playing a guitar and singing to the infant next door. They sent a magician up to Sam today which was really fun. I also got a free 15 minute massage today. Talk about a place where free massages are needed!
The Ronald House is very nice. Everyone is kind, and all residents are responsible for keeping it a pleasant atmoshere by cleaning after yourself, and following some simple rules of respect. Greg bought some groceries today that we can store there to defray some food costs. We started getting a few e-mails today for Sam and He enjoyed that. Thank you!!
Mail Addresses
Some people have asked for an address to send notes to Sam. He would love that I am sure. I will also read him any e-mail you or you kids send to me for him.
Children's Memorial Hospital
2300 Children's Plaza
Room 217
Chicago,IL 60614
Greg and I can also recieve mail for him at:
Ronald McDonald House
Ringle Family
Room 203
622 W. Deming Place
Chicago, IL 60614
Children's Memorial Hospital
2300 Children's Plaza
Room 217
Chicago,IL 60614
Greg and I can also recieve mail for him at:
Ronald McDonald House
Ringle Family
Room 203
622 W. Deming Place
Chicago, IL 60614
Monday, August 29, 2011
8/29/2011 - in Traction
We checked in to the hospital this morning, and finally understood why they wanted to do blood work and have Sam not eat after midnight. The doctor decided to sedate him while they positioned the harness traction. This allowed for the doctor to manipulate his head and neck with no resistance, in order to get him in the correct position. He was awake and in a PICU room by 10:45am. It is my understanding that we will be in this room for the remainder of our stay.
We spent the day mostly just working with the nurses on how to work through many strange circumstances. The last time a nurse could remember having a patient in a halter traction was 10 years ago. Typically that would be on a nuero floor or some other department such as if they had a fracture. However, we are in the ICU because he has to be on the CPAP and they only handle that in the ICU. The family life center brought us a portable DVD player, however, he couldn't sit up to watch it, so several heads went together to contrive the following
See the small red box hanging above him. That is the DVD, I believe he was watching Tangled. Other than that he has played DS, napped and even managed to eat a bit here and there.
They are really amazing here. Apparently in the ICU the idea is that you do what ever they need to make things work. The DVD was just the start. They have propped him on his side (they can do if his body stays in a straight line, which was accomplished with stuffed with blankets everywhere) just so he could nap more comfortably. They had him fitted for a hard collar already. The idea is if they can secure where his neck is, they can remove the traction just long enough that he may have the possibility of getting a few minutes upright tomorrow. That would be very nice. They also had the respiratory department take his CPAP mask and machine and have ways of making their equipment fit it, because we have to use their humidifier and tubing. All that just because he'd probably be most comfortable in his own mask.
Also, they had a new blanket and friend waiting for him as soon as he woke up.
The Bear's name is Butter. Foxy, seen in his arms, came with us for the ride.
Everything is progressing as planned. Please pray for Sam's comfort, as well our strength. All the planning and explanation in the world probably would not have been enough to prepare Sam for this. He is being his usual brave self, he hasn't complained once, though he must be so terribly uncomfortable. They are giving him pain meds and muscle relaxers to help him tolerate it. I am amazed at his strength. Thanks again for the love, prayers and support.
We spent the day mostly just working with the nurses on how to work through many strange circumstances. The last time a nurse could remember having a patient in a halter traction was 10 years ago. Typically that would be on a nuero floor or some other department such as if they had a fracture. However, we are in the ICU because he has to be on the CPAP and they only handle that in the ICU. The family life center brought us a portable DVD player, however, he couldn't sit up to watch it, so several heads went together to contrive the following
See the small red box hanging above him. That is the DVD, I believe he was watching Tangled. Other than that he has played DS, napped and even managed to eat a bit here and there.
They are really amazing here. Apparently in the ICU the idea is that you do what ever they need to make things work. The DVD was just the start. They have propped him on his side (they can do if his body stays in a straight line, which was accomplished with stuffed with blankets everywhere) just so he could nap more comfortably. They had him fitted for a hard collar already. The idea is if they can secure where his neck is, they can remove the traction just long enough that he may have the possibility of getting a few minutes upright tomorrow. That would be very nice. They also had the respiratory department take his CPAP mask and machine and have ways of making their equipment fit it, because we have to use their humidifier and tubing. All that just because he'd probably be most comfortable in his own mask.
Also, they had a new blanket and friend waiting for him as soon as he woke up.
The Bear's name is Butter. Foxy, seen in his arms, came with us for the ride.
Everything is progressing as planned. Please pray for Sam's comfort, as well our strength. All the planning and explanation in the world probably would not have been enough to prepare Sam for this. He is being his usual brave self, he hasn't complained once, though he must be so terribly uncomfortable. They are giving him pain meds and muscle relaxers to help him tolerate it. I am amazed at his strength. Thanks again for the love, prayers and support.
Sunday, August 28, 2011
8/28/11 update - Downtown safely
Hi all. I will try to post every day or two, but we will see what happens. I may not always link to facebook, so feel free to check the blog directly if you want to see if there is an update.
Saturday we started our preparation for surgery with a haircut for Sam. He was not real happy, but agreed it was for the best. His shorter cut will better match the shaved area for his incision.
Sam has been having a bit of a harder time the last few days. He will admit to being sad and a bit scared. But at the moment he is happily eating an apple and watching a Loony Tunes show. Praise God for small joys!
Saturday we started our preparation for surgery with a haircut for Sam. He was not real happy, but agreed it was for the best. His shorter cut will better match the shaved area for his incision.
Today started with an amazing time with our Sunday school group and church service. Their support and prayers are priceless to us. We then traveled up to my parents and dropped off Colin and Nate with my parents. It was hard to leave them, and generally a bit emotional for everyone, but we are thankful they will be in good hands.
We learned today that we did not yet get a room at the Ronald McDonald house. We will try again tomorrow and see if a spot opens for us. We should be moving up the waiting list. But this, as well, is in God's hands, and we will take each day as it comes. So tonight we are staying at a hotel just a short 5 minute drive to the hospital. (Thanks mom and dad!!)
Sam has been having a bit of a harder time the last few days. He will admit to being sad and a bit scared. But at the moment he is happily eating an apple and watching a Loony Tunes show. Praise God for small joys!
Tomorrow we check in to the hospital at 7:15am and will get a bit of blood work done first. Then at 8:45am we are scheduled for Sam to get set up with his traction.
That is all the news for now. We will most likely check out of the hotel in the morning. Hopefully, a spot will open up at the RM House, but if not, both Greg and I will try to stay at the hospital.
Thanks for continued prayers.
Wednesday, August 24, 2011
More Surgery Information
I have a little more information on surgery, as well as a few more questions. We will be checking in to Children's Memorial Hospital on Monday, August 29th. At that point Sam will be checked into the ICU. He will need to be in ICU for the duration of his stay because he is on a CPAP (his apnea machine) and that is the only area of the hospital where they handle a CPAP. While this will impose a few restrictions (such as no latex balloons, plants, flowers, and as far as I know right now no visitors under 16 except siblings) he will have very vigilant and uninterrupted care.
After he is admitted they will put him in a halter traction. This is basically a halter strapped under his chin while he is in a laying down position and weighted over his head. The idea is to pull everything as straight as possible so that the part of the spine that is comprimising his brainstem and nerves will no longer be compressing that area. About Thurday, give or take, they will evaluate if this is making enough of a difference. If so, surgery will continue as scheduled on Friday, Sept. 2nd. If not enough movement is made, then they will cancel the surgery and attach a halo style traction. We have been told that if this is the case we need to be prepared to possibly spend a few weeks with him in this type of traction and he would have to stay at the hospital throughout that time. It will be a matter of monitering his progress and waiting until the doctor is happy with the results. While this could end up being a lengthy and tedious stay at the hospital, our doctor explained it is well worth the effort if it helps us avoid additional surgery through the mouth or nose to remove the top of the protruding spine in the future. We are praying that the appropriate allignment is achieved. After that, they will go forth with surgery.
The doctor is still hopeful that he will be able to stay with a basic brain decompression without duraplasty, and a shorter fusion from skull to the C2. We are continuing to hope and pray that this is the case and that other measures can be avoided.
Sam's neurologist is very happy with his use and progess with his CPAP. She would like to evaluate things when he is fully recovered to see if aleiviating pressure on his brain resolves his apnea. The neurosurgeon has told us, however, that we can not know if surgery will help with that or not. It may help, but this surgery is to prevent further, permanant, and possibly disabling damage to his breathing and swallowing, or other functions. It is unknown whether his apnea is caused simply by the current compression, or if damage already exsists and the apnea will remain. We, of course, pray that his apnea can still be reversed, but will be thankful that we are in a position to do everything possible to prevent further complications.
Insurance is progressing differently than we had thought, but is going ok. We have been told that the ordered procedures do not need pre-authorization but do need a pre-certification. My understanding of this is that we can go ahead and be admitted to the hospital, and at that point the hospital nurses must communicate with the insurance nurses to confirm each proceedure prior to going forth with it. I have been assured from all parties that they will handle this and "not to worry about it". Obviously, this is easier said than done, but I am trying to turn this as well over to God's control, knowing I have done all that I can in this area.
A huge thanks to those of you who have sent Sam some DS games and other things to help pass his time in the hospital. Especially now that we may be looking at a lengthy period of traction, I really appriciate him having some fun new things to do. He is really touched to know so many people from his past and present are thinking about and praying for him. You have been a tangable picture of God's love and care for him. I am also deeply thankful for the many open-ended offers people have extended to do anything and everything we might need. If we are in Chicago a long time, I am sure I will begin to call in some of those favors.
Greg and I are still discussing our options and determining what the best thing is for all of our family if we need to be be there for a few weeks. Please pray for our wisdom in making choices concerning if we will split up our family between the hospital and home, or if our whole family will remain up north for the time period. We are very thankful for the support and understanding we have received from Greg's employer throughtout this time and they have allowed us some very good options for working out the current situation.
Praises:
Insurance has been working well with us to this point.
The blessing of your prayers and support throught this.
Peace from God that surpasses my ability to understand it.
Wonderful friends who will do anything just to give me a smile, and much more so to ease the burden.
Sam's remarkable ability to handle all that is happening.
For Greg's employer and how wonderful they have been.
For God's incredible work in our family.
That God led us to homeschool, and the flexibility it is now providing.
Prayer:
For insurance to continue to run smoothly.
That traction would be successful and as short as possible.
That surgery would be as conservative and succesful as possible.
For Colin and Nate as they try to deal with all the strangeness.
For Sam's joy and spirit to stay elevated.
For sufficient courage to continue in God's strength on this journey.
I am sure I have so many more prayers and praises to ask for, but I trust God will move you to things that I will never even think to ask. I assume my next update will be from the hospital, when I have somthing to report.
Thank you, and much love to you all. Kim and family
After he is admitted they will put him in a halter traction. This is basically a halter strapped under his chin while he is in a laying down position and weighted over his head. The idea is to pull everything as straight as possible so that the part of the spine that is comprimising his brainstem and nerves will no longer be compressing that area. About Thurday, give or take, they will evaluate if this is making enough of a difference. If so, surgery will continue as scheduled on Friday, Sept. 2nd. If not enough movement is made, then they will cancel the surgery and attach a halo style traction. We have been told that if this is the case we need to be prepared to possibly spend a few weeks with him in this type of traction and he would have to stay at the hospital throughout that time. It will be a matter of monitering his progress and waiting until the doctor is happy with the results. While this could end up being a lengthy and tedious stay at the hospital, our doctor explained it is well worth the effort if it helps us avoid additional surgery through the mouth or nose to remove the top of the protruding spine in the future. We are praying that the appropriate allignment is achieved. After that, they will go forth with surgery.
The doctor is still hopeful that he will be able to stay with a basic brain decompression without duraplasty, and a shorter fusion from skull to the C2. We are continuing to hope and pray that this is the case and that other measures can be avoided.
Sam's neurologist is very happy with his use and progess with his CPAP. She would like to evaluate things when he is fully recovered to see if aleiviating pressure on his brain resolves his apnea. The neurosurgeon has told us, however, that we can not know if surgery will help with that or not. It may help, but this surgery is to prevent further, permanant, and possibly disabling damage to his breathing and swallowing, or other functions. It is unknown whether his apnea is caused simply by the current compression, or if damage already exsists and the apnea will remain. We, of course, pray that his apnea can still be reversed, but will be thankful that we are in a position to do everything possible to prevent further complications.
Insurance is progressing differently than we had thought, but is going ok. We have been told that the ordered procedures do not need pre-authorization but do need a pre-certification. My understanding of this is that we can go ahead and be admitted to the hospital, and at that point the hospital nurses must communicate with the insurance nurses to confirm each proceedure prior to going forth with it. I have been assured from all parties that they will handle this and "not to worry about it". Obviously, this is easier said than done, but I am trying to turn this as well over to God's control, knowing I have done all that I can in this area.
A huge thanks to those of you who have sent Sam some DS games and other things to help pass his time in the hospital. Especially now that we may be looking at a lengthy period of traction, I really appriciate him having some fun new things to do. He is really touched to know so many people from his past and present are thinking about and praying for him. You have been a tangable picture of God's love and care for him. I am also deeply thankful for the many open-ended offers people have extended to do anything and everything we might need. If we are in Chicago a long time, I am sure I will begin to call in some of those favors.
Greg and I are still discussing our options and determining what the best thing is for all of our family if we need to be be there for a few weeks. Please pray for our wisdom in making choices concerning if we will split up our family between the hospital and home, or if our whole family will remain up north for the time period. We are very thankful for the support and understanding we have received from Greg's employer throughtout this time and they have allowed us some very good options for working out the current situation.
Praises:
Insurance has been working well with us to this point.
The blessing of your prayers and support throught this.
Peace from God that surpasses my ability to understand it.
Wonderful friends who will do anything just to give me a smile, and much more so to ease the burden.
Sam's remarkable ability to handle all that is happening.
For Greg's employer and how wonderful they have been.
For God's incredible work in our family.
That God led us to homeschool, and the flexibility it is now providing.
Prayer:
For insurance to continue to run smoothly.
That traction would be successful and as short as possible.
That surgery would be as conservative and succesful as possible.
For Colin and Nate as they try to deal with all the strangeness.
For Sam's joy and spirit to stay elevated.
For sufficient courage to continue in God's strength on this journey.
I am sure I have so many more prayers and praises to ask for, but I trust God will move you to things that I will never even think to ask. I assume my next update will be from the hospital, when I have somthing to report.
Thank you, and much love to you all. Kim and family
Tuesday, August 9, 2011
Surgery Date Set
We have a date set for surgery. As long as we can get two additional tests done and insurance cleared on time we will be checking in to Children's Memorial Hospital sometime in the week of August 29th for traction. We will not be certain how many days of traction are needed until we get a set of neck flexion x-rays completed so our hospital arrival date is uncertain yet. The surgery itself will be on Friday, September 2nd. We anticipate being in the hospital an additional 3-5 days with the possibility of up to a week after the surgery. I also found out today that we will need to get a CT Scan prior to surgery as well, but hopefully that will be quick and not be to difficult to obtain.
Please pray for me to gain quick insight into the insurance maze. I am feeling the pressure to get this right since this will be a major surgery done by a doctor out of our network at a hospital out of our network, and I have less than three weeks to make sure everyone is on the same page and all the red tape is filed correctly. Yikes! I am praying that I will be brought back constantly to the fact that all of it is in God's hands, and I just need to take the next step that is in front of me. Thanks again for the prayers.
Please pray for me to gain quick insight into the insurance maze. I am feeling the pressure to get this right since this will be a major surgery done by a doctor out of our network at a hospital out of our network, and I have less than three weeks to make sure everyone is on the same page and all the red tape is filed correctly. Yikes! I am praying that I will be brought back constantly to the fact that all of it is in God's hands, and I just need to take the next step that is in front of me. Thanks again for the prayers.
Monday, August 8, 2011
Results of our Neurosurgeon Appointment
We had a confirming and encouraging appointment today with the pediatric neurosurgeon in Chicago today. We found the office and the staff very child oriented and friendly. Everything went pretty much in the way we were expecting. The doctor felt that both a decompression surgery and the fusion on the vertebrae to skull were necessary. He indicated that the presence of central apnea was not a small thing. He described it as the brain stem showing that it was struggling, so while we feel that Sam seems asymptomatic as far as "classic Chiari symptoms" he has the presence of a major symptom that can't be ignored. The presence of central apnea already shows that the brain can not function properly in the present condition. He also said there is an imbalance of muscle strength between the right and left side of his body. Not something we notice, but also is a symptom that should not be ignored. We knew going in to the appointment that decompression along with fusion was probably what they would recommend, so while we would have loved to hear other news, we are not surprised or dismayed at this outcome.
Now for the good news (if you come from the standpoint that the surgery was a given). The doctor is hopeful that he can limit the decompression to only taking bone from the bottom of the skull. This means that he may not need to do a duraplasty (go into the brain tissue). Without the duraplasty there is zero chance of damaging brain tissue during the surgery or having a leakage of spinal fluid. These are the two most major complications we were looking at. He did indicate that during the surgery they would monitor the flow of cerebral spinal fluid flow, and that if it did not improve enough they may have to do the duroplasty, but he is hopeful that he may not.
He also hopes that he can leave in the 2nd and 3rd cervical plate. If so, then Sam's fusion can go from the skull to the C2 plate. This is a major thing. While he would still experience a major loss of neck mobility, it is a significant improvement over having to fuse further down. Again, during the surgery he may find it necessary to fuse further down, but he said he has had a lot of success fusing to only the C2, and that he is hopeful that that would be the case. The doctor felt confident that Sam should be able to drive a car when the time comes. I am praising God for this! It has been one of my concerns as this will make a big difference in independence in his life.
The doctor also will be determining, based on a set of neck flexion x-rays, if we may be able to move Sam's neck to limit the amount of the spine that is invading the brain cavity. He will recommend after the x-rays anywhere from a few hours to 2 days of traction in the hospital prior to surgery. The benefit of this is that he can then be fused in the best possible position and greatly diminish the chances of needing to have surgery through to mouth in the future to remove the "offending" tip of the spine. While this does not sound fun, it is way better than possibly needing additional surgery in the future.
We do not have a surgery date yet. The doctor asked us to call his administrative assistant tomorrow morning to schedule. I am expecting it to be within weeks as opposed to months. I would have waited to make this post, but I know there are several people who are waiting to hear how today went, so I will post a date when we have it.
We are very pleased with the doctor as well. When we asked about his experience with this, he indicated that most of his patients have more significant problems than Sam's. He said that quite frankly, this is one of the easier types of surgeries he does. We felt confident in him and his ability to provide excellent care for Sam.
Sam is doing OK. He said he is sad, but does not seem overly down. It is mostly that he is fine but has reasonable moments of sadness about having to go through this. I would say he is responding as well as possible.
So our prayer requests:
1- That God would continue to have His hand on us.
2- That traction time could be short, successful, and as comfortable as possible
3- That the decompression could be limited to the lower skull only
4- That the fusion could be limited to the C2 and that Sam would maintain as much mobility as possible
5- That the surgery will be scheduled in God's timing
6- That insurance would continue to work well with us on this
7- That Sam would find comfort and draw closer to God in this journey
We are also again praising God for the work He is doing in this situation. We have felt His presence and comfort in a way we never have before. I feel hope for the future and am continuing to trust God as we walk through this. Again I also praise God for all of you, and would appreciate your continued prayers.
Now for the good news (if you come from the standpoint that the surgery was a given). The doctor is hopeful that he can limit the decompression to only taking bone from the bottom of the skull. This means that he may not need to do a duraplasty (go into the brain tissue). Without the duraplasty there is zero chance of damaging brain tissue during the surgery or having a leakage of spinal fluid. These are the two most major complications we were looking at. He did indicate that during the surgery they would monitor the flow of cerebral spinal fluid flow, and that if it did not improve enough they may have to do the duroplasty, but he is hopeful that he may not.
He also hopes that he can leave in the 2nd and 3rd cervical plate. If so, then Sam's fusion can go from the skull to the C2 plate. This is a major thing. While he would still experience a major loss of neck mobility, it is a significant improvement over having to fuse further down. Again, during the surgery he may find it necessary to fuse further down, but he said he has had a lot of success fusing to only the C2, and that he is hopeful that that would be the case. The doctor felt confident that Sam should be able to drive a car when the time comes. I am praising God for this! It has been one of my concerns as this will make a big difference in independence in his life.
The doctor also will be determining, based on a set of neck flexion x-rays, if we may be able to move Sam's neck to limit the amount of the spine that is invading the brain cavity. He will recommend after the x-rays anywhere from a few hours to 2 days of traction in the hospital prior to surgery. The benefit of this is that he can then be fused in the best possible position and greatly diminish the chances of needing to have surgery through to mouth in the future to remove the "offending" tip of the spine. While this does not sound fun, it is way better than possibly needing additional surgery in the future.
We do not have a surgery date yet. The doctor asked us to call his administrative assistant tomorrow morning to schedule. I am expecting it to be within weeks as opposed to months. I would have waited to make this post, but I know there are several people who are waiting to hear how today went, so I will post a date when we have it.
We are very pleased with the doctor as well. When we asked about his experience with this, he indicated that most of his patients have more significant problems than Sam's. He said that quite frankly, this is one of the easier types of surgeries he does. We felt confident in him and his ability to provide excellent care for Sam.
Sam is doing OK. He said he is sad, but does not seem overly down. It is mostly that he is fine but has reasonable moments of sadness about having to go through this. I would say he is responding as well as possible.
So our prayer requests:
1- That God would continue to have His hand on us.
2- That traction time could be short, successful, and as comfortable as possible
3- That the decompression could be limited to the lower skull only
4- That the fusion could be limited to the C2 and that Sam would maintain as much mobility as possible
5- That the surgery will be scheduled in God's timing
6- That insurance would continue to work well with us on this
7- That Sam would find comfort and draw closer to God in this journey
We are also again praising God for the work He is doing in this situation. We have felt His presence and comfort in a way we never have before. I feel hope for the future and am continuing to trust God as we walk through this. Again I also praise God for all of you, and would appreciate your continued prayers.
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