Fusion! 3-28-2012

We have had a very busy 2 weeks of follow ups to mark Sam's progress six months out of surgery.  Last week we took him for his 4th sleep study.  This one was to see how his apnea levels were without a CPAP after healing.  Half way through the night they put a CPAP on him to guage his setting for continuing to use it.  My assumption based on that was that he would still definately require one.  We followed up that study with his nuerologist in Peoria this last Tuesday.  The first good news is that Sam no longer has central sleep apnea!  This was the unusual condition that alerted the doctors that something was very wrong in the first place.  He showed levels that would be expected of any average individual.  Yeah!  What this means to me is that Sam's brainstem is now functioning correctly.

Good news number two is that Sam's obstructive apnea is now boarderline.  He still qualifies to be a CPAP user, but we have some options.  We will spend the next few months figuring out if he feels better rested and more alert when on the CPAP or if it makes no difference.  His nuerologist said he would recieve some benefit with the CPAP, but not so much that she is concerned if we no longer use it if he doesn't notice a difference.  We don't have another Nuerologist visit until next year unless we have problems.

Today we traveled into Chicago for the next follow-ups.  Sam enjoyed taking lots of pictures out the window.

Sam had a full series of spinal and brain MRI's (3 total) and one CT scan.  These started very late as the technicians were concerned that even with titanium rods that their magnets would be too strong for Sam to safely go through the particular MRI machine he was scheduled for.  They finally resolved this issue and carried out the scans as planned.  We then shuttled over to Dr. Alden's office to get the results.  His clinic was very busy and we had quite a wait there.  Finally, we got in.

Good news number three - Sam has a completed fusion from the base of the skull to his 2nd cervical plate.  Dr. Alden was very pleased with the solid bone growth that was there.  He indicated that he considers it a complete successful fusion and it would be fine if no further bone growth occured.  This was the result we were looking for.  Also, the MRI's showed no syrinxes (cysts) on the spine or brain.  This will be one of the things they will be looking for the annual MRI's in the future.  It also showed a healthy amount of spinal fluid in the spaces that no room had previously been available.  All very good news!  We will not need to visit Dr. Alden again for 6 months for a regular x-ray, and then in a year for his next MRI.  We like Dr. Alden a lot, but are happy we will not be seeing him quite so often!

After all this we went for a very late lunch to the Austrian Bakery on Clark St. (Sam's request) where he enjoyed a big plate of spatzel, his favorite!  Back at grandma and grandpa's house now and will be on the road home soon.  This feels like a bit of an ending as there is thankfully not too much more to go on to report.  We are almost down to regular annual visits and no longer expecting more changes.  I will take this time then to thank you all once again for the tremendous support you have given us.  You have supported us, prayed for us and loved us through what is easily classified as the hardest thing our family has ever been through.  Most of all, we are thanking God for His hand being on Sam and our family, for His grace and care, and for carrying us through this.  Praise God!!

January Followup 1-30-2012

Thankfully, it has been a while since I had anything to blog about.  In the 1 and 1/2 months that Sam has been out of his neck brace he has been really enjoying it and getting back to regular life.  He has been running a little and swimming at the gym, chasing his brothers around the house, joining Nerf battles, and basically feeling a bit normal again.  He is so thankful to be able to join in to activities again.  I have also found him to be pretty concerned and compassionate toward even strangers who are going through medical problems.  God has definitively given Sam a heart for people who are in difficult situations with their health.

We had a followup appointment in Chicago again today.  This was another normal followup with an x-ray and consultation with Dr. Alden.  On a bit of a side note, Sam has grown a 1/2 inch since his last appointment.  I have some reasons to believe it was beneficial to have all this done prior to his adolescent growth spurt and it looks like we were in the nick of time!  Today's appointment went well.  Dr. Alden was very pleased with the x-rays.  At December's x-ray he indicated there was a "bridge" of bone growth in between the fusion.  This means that there was a thin bridge of bone extending from one part to the next.  This x-ray seemed to show a good size column of bone.  A CT scan is still the only definitive film for making this determination, but everyone is quite pleased with what can be seen in the plain x-ray.  All of his hardware is also staying solidly in place.  I have to admit I have been a bit nervous the last month as I have watched Sam be so active and then other times slouching in terrible posture on a chair.  All I could think was that it seemed like all those things would put such terrible stress on his neck.  As usual this mother's worry has amounted to nothing and Sam is doing fantastic.  The doctor even gave him permission to jump (feet first) off the diving board, and with a great deal of caution and safety measures in place go sledding (gulp, let's just say I am praying for our non-snowy winter to continue!).

Sam's spirits are really high.  I can see the stiffness and lack of movement in his neck, but when you ask him he indicates that he doesn't feel any lack of mobility at all.  I believe he doesn't feel like he has lost much, and to me that is way more important than what is fact.  If he is frustrated with anything it is the restrictions he is still under, and much of that will eventually be gone.  Hopefully, at some point we will be down to no contact sports and no roller coasters and that will be it.

Our next steps will come in March.  He has a busy schedule.  We will have a sleep study (to see what, if anything, the surgery did to his central apnea) a Neurologist appointment, a CT scan (to check bone growth), a spine and brain MRI (to see how everything looks 6 months post-op and make sure no spinal cysts have developed), and a Neurosurgeon followup.  We already have the sleep study and Neurologist set up.  I am hoping to schedule the MRI, CT, and Neurosurgeon all in one marathon day in Chicago.  But my first step is contacting insurance.  Our referral (that permits us to see an out of network doctor) has run it's course once again and I need to reapply for more visits.  Let me say here that with all the bad flack insurance companies take, I have been more than satisfied with our experience.  It takes a lot of work to stay on top of things, but we have been treated fairly, compassionately, and competently.

Prayer requests would be as follows:

1)  A new referral would be issued with out any problems.
2)  A beautiful MRI and CT scan showing everything healing as it should.
3)  Sam's tolerance of all the appointments in March.  He really hates the sleep studies.  And he has chosen to not be sedated for his MRI's.  It will take 1-2 hours of him laying perfectly still in that loud, small banging tube. I think I would need to be sedated!  But he has some decent experience with such things at this point and feels he can do it, and that it would be better than going through sedation.  (Can I just say how proud I am of this young man!)
4)  This is a stretch, but we have a big God.  I would love for Sam to be able to get off his CPAP after the sleep study.  I am not clinging to this being the outcome, but it would be wonderful for him to have a tangible benefit to all he has gone through.

Mostly I am just praising God for where we are.  There were times that it seemed the outcome of this was going to be so much worse.  I am overjoyed to be where we are today.  Thank you, Lord!

No More Neck Brace! - 12-19-2011

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.

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."

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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.