8/31/2011 - Ear Flaps

The last few days have been emotionally draining so Kim is taking the day off from the blog and I (Greg) am reporting on the events of the day.


Today has seen several events to bring some comfort for Sam.  During the middle of the night the last two nights, Sam has woke up in a panic due to gurgling water in his CPAP facemask.  The gurgling water built up condensation in his facemask and was basically shooting water up his nose as he was trying to sleep.


The respiration manager today was able to rig up a heated CPAP tube similar to the one that Sam uses on his home CPAP machine.  The heated hose keeps the water in heated vapor form and keep the condensation from building up.  Please pray that this solution works for Sam tonight and the rest that Sam gets is better and not interruped by CPAP issues.


Another effort to bring comfort today was several hospital staff members getting creative to release the pressure on Sam's ears from the head harness.  Sam had been in quite a bit of pain earlier today from his ears being smashed under the head harness.  You can see from the picture below that the staff members cut holes in the head harness and also used some foam padding under the harness to make it softer against his ears.

Sam had a short MRI this morning also to make sure the pain that he was in was only from the ears and not something internal being caused by the traction.  The doctors reported that everything was progressing well.  They weren't willing to say how much progress has been made in comparison to what is needed.  It is all in God's hands so pray hard for the movement that is needed to avoid halo traction.


Sam also had a visit from Grandma and Grandpa Nelson today who brought along Colin and Nathan.  It was good for the family to be together for the couple of hours that they were here.

Sam has short periods of time where we get him off the traction and out of bed.  He really enjoys these short breaks.

The Ronald McDonald House continues to bless us as Kim had a full night sleep there last night and I will this evening.  Kim had a dinner last night there provided by the Notre Dame Club of Chicago and I will have dinner there tonight provided by another group.  The house is a short 2 block walk to the hospital.

Please continue to pray for Sam for comfort as the pain has been off and on.  Also, please pray that God would allow the halter traction to make the progress needed.  Sam asked today how long the traction will last and it will break my heart even further to tell him that another more painful version of traction is needed.

Jesus knew Sam before he was born and has a grand plan in all this for His glory.  We are just hanging on for dear life on the roller coaster ride that we are on.

Thanks for riding with us and providing love, support, friendship, and prayers.

Peace of Christ to you all.  

8/30/2011

Couple of events today.  Sam ate pretty well and got over a little dehydration from last night.  They were able to take him off IV fluids.  He said today didn't feel quite as bad as yesterday.  They approved putting him in the hard collar for just a few minutes at a time.  With the hard collar fitted they can disconnect the weights of the traction and let him stand for a few minutes.  He liked that a lot.  He had some x-rays taken this morning and the doctor indicated that he saw some movement and thought it was going fine.  He has ordered something more detailed than x-rays that will be taken Thursday, though I won't be surprised if they do x-rays again before then again.

While this is a place you truly don't want to have to be, the hospital does some amazing things to make it tolerable.  They have a department specifically for that purpose.  Today one of the specialists from there was playing a guitar and singing to the infant next door.  They sent a magician up to Sam today which was really fun.  I also got a free 15 minute massage today.  Talk about a place where free massages are needed!

The Ronald House is very nice.  Everyone is kind, and all residents are responsible for keeping it a pleasant atmoshere by cleaning after yourself, and following some simple rules of respect.  Greg bought some groceries today that we can store there to defray some food costs.  We started getting a few e-mails today for Sam and He enjoyed that.  Thank you!!

Mail Addresses

Some people have asked for an address to send notes to Sam.  He would love that I am sure.  I will also read him any e-mail you or you kids send to me for him.

Children's Memorial Hospital
2300 Children's Plaza
Room 217
Chicago,IL  60614

Greg and I can also recieve mail for him at:

Ronald McDonald House
Ringle Family
Room 203
622 W. Deming Place
Chicago, IL  60614

8/29/2011 - in Traction

We checked in to the hospital this morning, and finally understood why they wanted to do blood work and have Sam not eat after midnight.  The doctor decided to sedate him while they positioned the harness traction.  This allowed for the doctor to manipulate his head and neck with no resistance, in order to get him in the correct position.  He was awake and in a PICU room by 10:45am.  It is my understanding that we will be in this room for the remainder of our stay.

We spent the day mostly just working with the nurses on how to work through many strange circumstances.  The last time a nurse could remember having a patient in a halter traction was 10 years ago.  Typically that would be on a nuero floor or some other department such as if they had a fracture.  However, we are in the ICU because he has to be on the CPAP and they only handle that in the ICU.  The family life center brought us a portable DVD player, however, he couldn't sit up to watch it, so several heads went together to contrive the following

See the small red box hanging above him.  That is the DVD, I believe he was watching Tangled.  Other than that he has played DS, napped and even managed to eat a bit here and there.

They are really amazing here.  Apparently in the ICU the idea is that you do what ever they need to make things work.  The DVD was just the start.  They have propped him on his side (they can do if his body stays in a straight line, which was accomplished with stuffed with blankets everywhere) just so he could nap more comfortably.  They had him fitted for a hard collar already.  The idea is if they can secure where his neck is, they can remove the traction just long enough that he may have the possibility of getting a few minutes upright tomorrow.  That would be very nice.  They also had the respiratory department take his CPAP mask and machine and have ways of making their equipment fit it, because we have to use their humidifier and tubing.  All that just because he'd probably be most comfortable in his own mask.

Also, they had a new blanket and friend waiting for him as soon as he woke up.

The Bear's name is Butter.  Foxy, seen in his arms, came with us for the ride.

Everything is progressing as planned.  Please pray for Sam's comfort, as well our strength.  All the planning and explanation in the world probably would not have been enough to prepare Sam for this.  He is being his usual brave self, he hasn't complained once, though he must be so terribly uncomfortable.  They are giving him pain meds and muscle relaxers to help him tolerate it.  I am amazed at his strength.  Thanks again for the love, prayers and support.

8/28/11 update - Downtown safely

Hi all.  I will try to post every day or two, but we will see what happens.  I may not always link to facebook, so feel free to check the blog directly if you want to see if there is an update.

Saturday we started our preparation for surgery with a haircut for Sam.  He was not real happy, but agreed it was for the best.  His shorter cut will better match the shaved area for his incision.

Today started with an amazing time with our Sunday school group and church service.  Their support and prayers are priceless to us.  We then traveled up to my parents and dropped off Colin and Nate with my parents.  It was hard to leave them, and generally a bit emotional for everyone, but we are thankful they will be in good hands.

We learned today that we did not yet get a room at the Ronald McDonald house.  We will try again tomorrow and see if a spot opens for us.  We should be moving up the waiting list.  But this, as well, is in God's hands, and we will take each day as it comes.  So tonight we are staying at a hotel just a short 5 minute drive to the hospital.  (Thanks mom and dad!!)

Sam has been having a bit of a harder time the last few days.  He will admit to being sad and a bit scared.  But at the moment he is happily eating an apple and watching a Loony Tunes show.  Praise God for small joys!

Tomorrow we check in to the hospital at 7:15am and will get a bit of blood work done first.  Then at 8:45am we are scheduled for Sam to get set up with his traction.

That is all the news for now.  We will most likely check out of the hotel in the morning.  Hopefully, a spot will open up at the RM House, but if not, both Greg and I will try to stay at the hospital.

Thanks for continued prayers.

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

Surgery Date Set

We have a date set for surgery.  As long as we can get two additional tests done and insurance cleared on time we will be checking in to Children's Memorial Hospital sometime in the week of August 29th for traction.  We will not be certain how many days of traction are needed until we get a set of neck flexion x-rays completed so our hospital arrival date is uncertain yet.  The surgery itself will be on Friday, September 2nd.  We anticipate being in the hospital an additional 3-5 days with the possibility of up to a week after the surgery.  I also found out today that we will need to get a CT Scan prior to surgery as well, but hopefully that will be quick and not be to difficult to obtain. 

Please pray for me to gain quick insight into the insurance maze.  I am feeling the pressure to get this right since this will be a major surgery done by a doctor out of our network at a hospital out of our network, and I have less than three weeks to make sure everyone is on the same page and all the red tape is filed correctly. Yikes!  I am praying that I will be brought back constantly to the fact that all of it is in God's hands, and I just need to take the next step that is in front of me.  Thanks again for the prayers.

Results of our Neurosurgeon Appointment

We had a confirming and encouraging appointment today with the pediatric neurosurgeon in Chicago today.  We found the office and the staff very child oriented and friendly.  Everything went pretty much in the way we were expecting.  The doctor felt that both a decompression surgery and the fusion on the vertebrae to skull were necessary.  He indicated that the presence of central apnea was not a small thing.  He described it as the brain stem showing that it was struggling, so while we feel that Sam seems asymptomatic as far as "classic Chiari symptoms" he has the presence of a major symptom that can't be ignored.  The presence of central apnea already shows that the brain can not function properly in the present condition.  He also said there is an imbalance of muscle strength between the right and left side of his body.  Not something we notice, but also is a symptom that should not be ignored.  We knew going in to the appointment that decompression along with fusion was probably what they would recommend, so while we would have loved to hear other news, we are not surprised or dismayed at this outcome.

Now for the good news (if you come from the standpoint that the surgery was a given).  The doctor is hopeful that he can limit the decompression to only taking bone from the bottom of the skull.  This means that he may not need to do a duraplasty (go into the brain tissue).  Without the duraplasty there is zero chance of damaging brain tissue during the surgery or having a leakage of spinal fluid.  These are the two most major complications we were looking at.  He did indicate that during the surgery they would monitor the flow of cerebral spinal fluid flow, and that if it did not improve enough they may have to do the duroplasty, but he is hopeful that he may not. 

He also hopes that he can leave in the 2nd and 3rd cervical plate.  If so, then Sam's fusion can go from the skull to the C2 plate.  This is a major thing.  While he would still experience a major loss of neck mobility, it is a significant improvement over having to fuse further down.   Again, during the surgery he may find it necessary to fuse further down, but he said he has had a lot of success fusing to only the C2, and that he is hopeful that that would be the case.  The doctor felt confident that Sam should be able to drive a car when the time comes.  I am praising God for this!  It has been one of my concerns as this will make a big difference in independence in his life.

The doctor also will be determining, based on a set of neck flexion x-rays, if we may be able to move Sam's neck to limit the amount of the spine that is invading the brain cavity.  He will recommend after the x-rays anywhere from a few hours to 2 days of traction in the hospital prior to surgery.  The benefit of this is that he can then be fused in the best possible position and greatly diminish the chances of needing to have surgery through to mouth in the future to remove the "offending" tip of the spine.  While this does not sound fun, it is way better than possibly needing additional surgery in the future.

We do not have a surgery date yet.  The doctor asked us to call his administrative assistant tomorrow morning to schedule.  I am expecting it to be within weeks as opposed to months.  I would have waited to make this post, but I know there are several people who are waiting to hear how today went, so I will post a date when we have it.

We are very pleased with the doctor as well.  When we asked about his experience with this, he indicated that most of his patients have more significant problems than Sam's.  He said that quite frankly, this is one of the easier types of surgeries he does.  We felt confident in him and his ability to provide excellent care for Sam.

Sam is doing OK.  He said he is sad, but does not seem overly down.  It is mostly that he is fine but has reasonable moments of sadness about having to go through this.  I would say he is responding as well as possible.

So our prayer requests:
1- That God would continue to have His hand on us.
2- That traction time could be short, successful, and as comfortable as possible
3- That the decompression could be limited to the lower skull only
4- That the fusion could be limited to the C2 and that Sam would maintain as much mobility as possible
5- That the surgery will be scheduled in God's timing
6- That insurance would continue to work well with us on this
7- That Sam would find comfort and draw closer to God in this journey

We are also again praising God for the work He is doing in this situation.  We have felt His presence and comfort in a way we never have before.  I feel hope for the future and am continuing to trust God as we walk through this.  Again I also praise God for all of you, and would appreciate your continued prayers.