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.
Friday, September 16, 2011
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.
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