Bad News

December 14, 2012

Today was the day.  The day we would get some answers, even though they were answers we knew we would not want to hear.  I spent most of the night researching terms like "chiari" and "hydrocephalus" so I could have some background knowledge to help me understand our conversation we would have with the neurosurgeon.  Poor Mike worked from 7AM-10PM last night, drove to the hospital from Lehi, stayed for an hour, then drove home and woke up at 5:45 AM to be back to the hospital.  We were told the neurosurgeon would be here in the morning. That typically means before clinic, which is 7-8ish AM.  So Mike made sure he was here bright and early.  Too bad the doctor wasn't. 

Jayson had a rough night full of strange episodes involving seizure like behavior, muscle spasms, gagging and choking.  He didn't get settled to sleep until almost 3 AM again.  He kept us on our toes this morning by having a fairly high resting heart rate of 188 and a fever of 101*.  Then he vomited five times and his fever increased to 101.5.  The poor monkey also had diarrhea and was not happy or comfortable.  The doctor team was uncertain whether these changes were related to his brain stem compression, or if he was contracting an illness.  We realized that we would be spending Jayson's birthday in the hospital this year.  No biggie.  We weren't really surprised.  We've spent Valentines Day, St. Patricks day, the day after Easter, Halloween, the day after Thanksgiving and now his birthday in the hospital.  It's how we roll.  Honestly, I don't care.  His birthday is about celebrating him and his amazing life and journey.  That can be done anywhere.  I know it will be a special day regardless of where we are.  

Well, the neurosurgeon finally made his appearance at 11:30 AM.  I hoped he would come in, take a seat, draw some diagrams and make me feel at ease.  That's not quite how it went, but it was still okay.  I could tell he had limited time.  He had two students/residents with him observing.  He kept rushing me along as I described symptoms that had surfaced since we saw him last.  I immediately forgot about asking half of the questions on my list simply because I knew they would not fit in our short time frame.  He did pull up the 6month MRI and the 12 month MRI to compare them.  He showed how much they had changed in a short period of time.  Jayson's new MRI pictures of his brain looked just like the pictures I saw when I did research on Chiari.  Sure enough, that is what he has.  His lower brain and brain stem is being forced into the spinal column because things are so tight and compressed in that area.  This puts a lot of pressure on the brain and constricts the flow of the spinal fluid.  I asked the neurosurgeon about hydrocephalus and he said that he doesn't seen signs of hydrocephalus at this time.  YAY!!!  There is no fluid on his brain.  He said his Chiari is a type I right now, although he's showing lots of symptoms of type II.  He believed that the compression on the brain was causing a lot of his symptoms that have been getting more complicated lately:  apnea, breathing problems, swallowing problems, gagging, muscle spasms, muscle weakness, fevers, vomiting, fussiness and irritability, eye deviation, sleepiness, rubbing eyes and head, seizure-like episodes.  Given this fact and the life threatening apnea episode, he thinks something needs to be done soon.  He said that it seems that Jayson's heart beats, it's pulsating the spinal fluid which could cause pressure and these life threatening events.  He said he usually doesn't rush into these things, and he likes to wait until the child is older, but he feels the risks of NOT doing the surgery right away outweigh the risks of the surgery.  He said, however, if we felt as his parents that we should wait and watch for a while longer, we could.  I asked him a difficult question that had been on my mind.  I've been told so many times, "Well, you have a monitor and know CPR, so you should be good."  I asked, "So, if he stops breathing due to brainstem compression and spinal fluid constriction, will I even be able to revive him with CPR?"  He chuckled in response to my question.  I could immediately see why friends said he does not have good bedside manner.  He responded, "Well, given you had to even ask that question, I think we should try and schedule him for Tuesday.  We would HOPE that you could revive him, but you shouldn't have to have that be a major concern on your mind and worry about reviving your son again.  Are you guys available on Tuesday?"  I was surprised.  Tuesday.  That's soon.  That's 4 days away.  That's a big procedure for 4 days away.  That's right before Christmas.  Wow.  I hesitated and said, "Yes."  I asked about the procedure.  First the doctor will make an incision in the back of the skull and neck.  He will open up the dura, which is the covering of the brain.  Next he will remove bone from the back of the skull and remove the back of the first C1 vertebrae.  Next he would make sure there was normal fluid flow by shrinking the cerebellar tonsils, which is a non-functioning piece of tissue.  Last, and most importantly, he will put a graft in there, instead of just closing the dura edge to edge, it will turn a small constricted area into a bigger area which will allow the spinal fluid to flow more normally around the front and back.  I asked about the C1 vetebrae problems.  He looked back at the Catscan we took in October and said that the vertebrae concern comes secondary to the compression issue.  He will not fuse the C1 vertebrae at this time.  He wants Jayson to be older and more stable.  We will go back in sometime between ages 2-4 and do that procedure.  By removing part of the C1 vertebrae to open up the compressed spine and brain stem, it may cause his neck to be even more unstable. He may need to wear a collar brace sooner rather than later.  I asked about recovery.  He said that kids usually stay in the hospital 2-3 days afterwards and go home and recover well.  He said it is likely many of issues will improve immediately.  I asked about the risks and he mentioned there are not many more risks than typical surgeries.  Risk associated with anesthesia, risks of infection, etc.  With this procedure there is a risk of chemical meningitis, however it is easily treated with steroids.  Uncommonly, while opening up the dura there are pockets of venus blood, like lakes, that can be opened up.  It's easy to repair them, but at times there is a lot of blood loss which requires a transfusion.  The doctor explained things quickly, clearly, concretely and confidently.  Under normal circumstances, I would have been drowning in a puddle of tears while hearing all of this traumatic and awful news.  But I had full confidence in our surgeon.  I felt it was the right thing.  I knew it needed to be done to preserve my son's life.  Because of those facts, I almost felt relieved to hear this information.  We had a cause of many of his symptoms and problems.  We had a plan to resolve these problems.  We had a timeline.  We could get through this.

I began calling immediate family to inform them of the new information.  A couple of hours later, his nurse practitioner returned to tell us that our doctors schedule was full for Tuesday.  The soonest he could get us in was... January 7th.   Wow.  That's a long time to wait after hearing how necessary this procedure was.  I asked her what I was supposed to do in the meantime and she said, "Well you have a monitor and you know CPR."  Awesome.  My favorite response.  I looked at the calendar and realized that if his Tuesday was full, he was likely taking the next two weeks off for the holidays, and the 7th was the first available surgery day he would have.  I am terrified to take my unstable boy home.  He just stopped breathing for crying out loud.  But I tried to focus on the positive.  He'll be home for Christmas.  We'll have time to prepare mentally, physically, and emotionally for this procedure.  We'll have time to gather a lot of prayers and well wishes for Jayson.  Our doctor won't be on vacation immediately after the surgery, so if we need him he'll be there.  I can work from home and keep my eye on him day and night until then.  And yes, I have a monitor and know CPR.  Most of all, I know that God has led us to this point.  He knows this is what Jayson needs.  If Jayson needed it on Tuesday, it would have happened on Tuesday.  I know God will take care of little Jayson until we can have this procedure done.

Currently, Jayson is still not comfortable.  He's still have unusual episodes and his fever has spiked to 102.5.  He hasn't vomited since this morning, but he has felt nauseas demonstrated through his occasionally peaking heart rate and claminess.  It does not look like we will be going home in the next 24 hours.

Tomorrow is Jayson's birthday.  He is going to be one year old.  I don't know that there are words to describe the feelings I have in my heart right now.  There were many days where I feared Jayson would not be on this earth to celebrate his first birthday.  I have had many fears about the condition Jayson might be in when celebrating this day.  Yes, He may be in the hospital, he may be facing a big, complex surgery, he may have nearly lost his life, but he is doing well.  He is doing amazingly well.  He has a huge smile on his face.  The hospital room echoes from his baby giggles.  He grabs his toes and kisses his mommy.  He hollers and squeals.  He reaches for daddy and snuggles his blankie and stuffed animals.  He rolls to get what he wants and he cries when he can't.  He fights every single day.  He will never give up.  He has a mission and he is determined to fulfill it.  He touches lives of people all over the world every single day.  His story is shared with moms, dads, friends, family, strangers and medical staff internationally.  Jayson has changed the lives of many in one short year.  All who have met him, all who have heard his story are forever changed.  He inspires, teaches, and encourages all who see the sparkle in his eyes.  He is truly a miracle.  Imagine what he will do over the next 12 months.  Imagine who we all will become over the next year.  We have all become better people by knowing and loving Jayson Michael West.