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!