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.