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.

9/1/2011 - Surgery Tomorrow

This is Greg again posting as I have sent Kim out of the hospital on a mandatory several hour mental health break.

Good news to report this morning.  Sam's neurosurgeon, Dr. Alden, was here to make more modifications to Sam's head harness to provide further relief to his ears.  Sam continued to be in pain last night.  The ears look to be freed up from the pressure so we'll see how it feels when Sam wakes up.

During Dr. Alden's visit we discussed the progress of the traction.  He indicated that enough progress has been made to go forward with the Chiari decompression and spinal fusion in the morning.  Praise God.  He showed me the before MRI and the MRI that was done yesterday.  Even with my laymen eyes I could see the differences in the area where the space was needed.  Dr. Alden had measured a 2 millimeter difference which doesn't sound like a lot but in the tiny areas in Sam's brain it is notable.  He indicated that additional traction through a halo would mostly likely not provide any more significant room.

The surgery will be during the second rotation of surgeries tomorrow morning.  This means that Sam will be the second surgery but the time depends on how long the first surgery takes.  It will most likely be around 10:00 am tomorrow morning.

We are feeling thankful for all our prayer warriors out there.  The battle belongs to the Lord but we must take up our weapons (the word of God, Ephesians 6) and fight through prayers and faith.

We will post another post later in the day but this news was too good to keep until then.