More Surgery Information

I have a little more information on surgery, as well as a few more questions.  We will be checking in to Children's Memorial Hospital on Monday, August 29th.  At that point Sam will be checked into the ICU.  He will need to be in ICU for the duration of his stay because he is on a CPAP (his apnea machine) and that is the only area of the hospital where they handle a CPAP.  While this will impose a few restrictions (such as no latex balloons, plants, flowers, and as far as I know right now no visitors under 16 except siblings) he will have very vigilant and uninterrupted care.

After he is admitted they will put him in a halter traction.  This is basically a halter strapped under his chin while he is in a laying down position and weighted over his head.  The idea is to pull everything as straight as possible so that the part of the spine that is comprimising his brainstem and nerves will no longer be compressing that area.  About Thurday, give or take, they will evaluate if this is making enough of a difference.  If so, surgery will continue as scheduled on Friday, Sept. 2nd.  If not enough movement is made, then they will cancel the surgery and attach a halo style traction.  We have been told that if this is the case we need to be prepared to possibly spend a few weeks with him in this type of traction and he would have to stay at the hospital throughout that time.  It will be a matter of monitering his progress and waiting until the doctor is happy with the results.  While this could end up being a lengthy and tedious stay at the hospital, our doctor explained it is well worth the effort if it helps us avoid additional surgery through the mouth or nose to remove the top of the protruding spine in the future.  We are praying that the appropriate allignment is achieved. After that, they will go forth with surgery.

The doctor is still hopeful that he will be able to stay with a basic brain decompression without duraplasty, and a shorter fusion from skull to the C2.  We are continuing to hope and pray that this is the case and that other measures can be avoided.

Sam's neurologist is very happy with his use and progess with his CPAP.  She would like to evaluate things when he is fully recovered to see if aleiviating pressure on his brain resolves his apnea.  The neurosurgeon has told us, however, that we can not know if surgery will help with that or not.  It may help, but this surgery is to prevent further, permanant, and possibly disabling damage to his breathing and swallowing, or other functions.  It is unknown whether his apnea is caused simply by the current compression, or if damage already exsists and the apnea will remain.  We, of course, pray that his apnea can still be reversed, but will be thankful that we are in a position to do everything possible to prevent further complications.

Insurance is progressing differently than we had thought, but is going ok.  We have been told that the ordered procedures do not need pre-authorization but do need a pre-certification.  My understanding of this is that we can go ahead and be admitted to the hospital, and at that point the hospital nurses must communicate with the insurance nurses to confirm each proceedure prior to going forth with it.  I have been assured from all parties that they will handle this and "not to worry about it".  Obviously, this is easier said than done, but I am trying to turn this as well over to God's control, knowing I have done all that I can in this area.

A huge thanks to those of you who have sent Sam some DS games and other things to help pass his time in the hospital.  Especially now that we may be looking at a lengthy period of traction, I really appriciate him having some fun new things to do.  He is really touched to know so many people from his past and present are thinking about and praying for him.  You have been a tangable picture of God's love and care for him.  I am also deeply thankful for the many open-ended offers people have extended to do anything and everything we might need.  If we are in Chicago a long time, I am sure I will begin to call in some of those favors. 

Greg and I are still discussing our options and determining what the best thing is for all of our family if we need to be be there for a few weeks.  Please pray for our wisdom in making choices concerning if we will split up our family between the hospital and home, or if our whole family will remain up north for the time period.  We are very thankful for the support and understanding we have received from Greg's employer throughtout this time and they have allowed us some very good options for working out the current situation.

Praises:
Insurance has been working well with us to this point.
The blessing of your prayers and support throught this.
Peace from God that surpasses my ability to understand it.
Wonderful friends who will do anything just to give me a smile, and much more so to ease the burden.
Sam's remarkable ability to handle all that is happening.
For Greg's employer and how wonderful they have been.
For God's incredible work in our family.
That God led us to homeschool, and the flexibility it is now providing.

Prayer:
For insurance to continue to run smoothly.
That traction would be successful and as short as possible.
That surgery would be as conservative and succesful as possible.
For Colin and Nate as they try to deal with all the strangeness.
For Sam's joy and spirit to stay elevated.
For sufficient courage to continue in God's strength on this journey.

I am sure I have so many more prayers and praises to ask for, but I trust God will move you to things that I will never even think to ask.  I assume my next update will be from the hospital, when I have somthing to report.

Thank you, and much love to you all.  Kim and family