Wednesday, August 13, 2014

A Mother's Hunch

Wyatt and his corn that he grew this year.  He is so proud!
It's midnight before Wyatt's surgery tomorrow and I feel the same feeling that I felt six years ago.  It has been almost five years since the last in-patient surgery and so much progress has happened since then and now and so much is still the same.  Wyatt is certainly an unique little boy.  We just got back from a short trip to the beach at 10pm, I connected him to the food pump so he can get a little Pedisure in before midnight, and then poured water in his food bag until 2am so that he has all the food and strength he needs by tomorrow.   That part of surgery has not changed, and now I am up late blogging, passing time by before I take him off all feeds at 2am.  As we fast forward five years, Wyatt is now aware of everything which makes surgery much harder.  He asks great questions.  Questions a six year old usually never asks- where is the incision?  are they going to shave my head? how long is the recovery? where are they going to place the stickers on my body? etc...  He is highly anxious and very stressed, so we waited to tell him about surgery until the night before the pre-op. 

Where did it all begin?  Wyatt is the type of little boy that has the potential of falling through the cracks.   I am so proud of the progress he has made.  He enjoys sports and wants to play everything.  He enjoys school and is doing great!  He likes to read and enjoyed math and science this year.  Cognitively, he is just like any other first grader.  He is social and makes friends easily and he can carry a great conversation with adults.  He has a great sense of humor too! I am sooooo grateful for all of that, but as a Mom, I am the person to look after ALL of him.... he still needs medical care to help him grow and thrive.  He uses oxygen while sleeping, feeding tube to help hydrate and maintain his weight, and extra care during physical activities to help with balance and endurance. He still coughs/gags while eating b/c of his paralyzed vocal cord.  He is still extremely sensitive to noise too. We don't make this a focus and treat Wyatt like any other soon to be seven year old, but his family is also the only people to make sure he can reach his greatest potential. 

This past Fall, I noticed Wyatt making eye twitches.  I took him to the eye doctor and he said his eyes were irritated and gave us drops.  He continued the eye twitches and some facial movements, so the following month, I took him to the neurologist.  She said it was a tic and it's perfectly normal for a six year old boy to have a tic and that he will grow out of it.  During the winter at our ortho appt. Wyatt was diagnosed with scoliosis ( minor curve).  It was the first time this was noticed and I was a little surprised even though CDH kids are prone to it.  I also noticed Wyatt swiping his ear, saying it feels "dark" inside and complaining about headaches, especially after being very active or moving a different direction.  He would also tell me his legs feel "tired."  It was time for our annual neurosurgery appt.  Since neurosurgeon retired,  we made an appointment with another doctor that was referred to us by his pediatrician.  He ordered a MRI with contrast at our appt.  It was horrible!  The nurse had trouble finding Wyatt's vein for the contrast and Wyatt moved during the MRI since he was crying so much.  The next step was ordering an MRI under anesthesia of the head and spine a few weeks later as well as a test to find out if the shunt was working.  The procedures took about four hours and the results were surprising. 

The MRI showed that Wyatt has Chiari Malformation and Syringomyleia  - .  The PA came into the waiting room and pulled up a chair next to us to explain everything (I knew something was wrong)  She said that Wyatt's brain is a little large for his skull causing the cerebellum to protrude outward.  The opening into the spine is too narrow causing the spinal fluid to collect in his brain and spine.  The next day, she called to share the shunt test results, telling us the tubing is too short and that it's clogged.  She said that the neurosurgeon would like to meet with us in his office after the weekend to discuss next steps.  Benji and I sat down with him at his desk on that following Monday and he was very informative.  He took his time with us to explain the MRI in detail and answered all our questions.  After talking with the lady who schedules surgery, our only option was to schedule surgery on Aug. 13th, right in the middle of our Hilton Head vacation.  There was no choice but to for go our vacation.  We felt bad since the kids were looking forward to go on vacation with just the four of us.  It's been three years since the four of us went away together so we went on a short beach trip from Sun-Tues to the beach and they were happy with it and we had a great time!  We also cancelled Chloe's art camp the week before because it was too much to try to go to Wyatt's appointments and take Chloe back and forth.  She didn't mind that either.  Taking her along to Wyatt's appointments helps lesson the stress.  She makes Wyatt laugh and is truly his best medicine.  Chloe is a little miracle for Wyatt.  Chloe was so excited we would be on vacation for her 8th birthday, instead, we will be at a hospital.    Kids are bouncy balls and the past two weeks showed us the importance of being flexible! 

I feel a little relieved about this diagnosis.  It explains so much that I could never really put my finger on.  The cerebellum affects balance and Wyatt has major issues with balance.  He can not walk on the balance beam and is not always steady on his feet.  It also causes nystigmus (eye wiggling), which Wyatt has had since he was an infant.  It causes scoliosis which Wyatt has.  It causes headaches during activity which he gets and muscle weakness.  The surgery will help Wyatt have a better quality of life and will either stabilize his symptoms or improve them.  In addition to the Chiari Malformaiton, the Syringomyleia (fluid in the spine) could damage the nerves in the spine.

The doctor told us it's major brain surgery, but routine and that he just completed a CM surgery last week.  We were also told that it's a painful surgery because they have to cut through muscle and  bone.

The outpouring of support from family and friends is truly overwhelming and we are forever grateful.  Please pray for a rapid recovery and a smooth surgery.  I pray that Wyatt turns a corner after this and will be able to do whatever he sets his mind on doing!! 

Here is a few pics of Wyatt over the years!

Playing baseball
Just yesterday at the beach!

Years of physical therapy a
Just a few days old on ECMO

Learning to walk with Chloe by his side

Learning to walk

Wyatt and his Great Grandmom Ada


First O's game

Can't forget about his sister Chloe (2010-2011)

Chloe in 2014

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