Saturday, April 9, 2016

One more day....

Always an adventure with Wyatt!  He has been complaining of headaches and had double vision this morning and a weaker left side (he's left handed and can not pick up the fork to eat or can not walk unassisted).  We were planning on going home pending results of an MRI today.  The doctor just came in to talk with us to explain what's going on - first the good news... the fluid in the spine is decreasing, so the stent is working!  The headache pain is caused by swelling from the vein/artery that was cut.  Also, he has fluid under his skull.  It will take a couple of weeks for the fluid to get absorbed and the swelling to go down but it will get better.  He asked us to stay one more night for observation. Overall, his doctor  is very happy that the fluid in the spine is already decreasing.  

Wednesday, April 6, 2016

Wyatt's Brain Surgery 2016

As I sit in a quiet hospital room while Wyatt sleeps, I wonder how differently things are now from 8 years ago.  Because of the many roommates we have had 8 years ago from the NICU, PICU, and 6th floor and by having my blog, we made so many connections world wide and at Johns Hopkins.  It was a much needed and wonderful support network.  Things are different now- definitely more comfortable and luxurious but it was those connections that kept us going.  Now updates are made on Facebook, limiting just your friends to see and having a private room with its own bathroom, while very nice, also is very isolating.  I kinda like the culture and environment 8 years ago better.  Being in a much more stable place now, I certainly don't mind being in the new JHH!  Wyatt is living up to his name of being a warrior.  After a tough, long, five hour surgery to place a stent in the ventricles and to clear out the scar tissue, he is doing remarkably well.  The last two days were painful but today Wyatt is working hard to try his best to be active.  We are very thankful to the wonderful doctors and nurses here.  It was neat to travel down memory lane having the doctor on call in the PICU on Monday night also was the doctor who put him on ECMO at two days old.  It was neat to bump into Wyatt's NICU neighbor during his first month of life and it was nice that nurses stopped by to visit sharing that they took care of him as a baby and he made such an impression.  Wyatt's brain surgery and our daily routine is a reminder that kids live with CDH daily.  My little guy and his sister Chloe are such blessings. 

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

Friday, April 19, 2013

CDH Awareness

Wyatt is now five years old and is doing great! He is involved in t-ball, takes violin lessons, gymnastics, and goes to preschool. Academically he is right on track! He just earned a gleaming report card and is all ready for kindergarten next year.

On the flip side, Wyatt and our family will ALWAYS live with CDH. He still is on oxygen at night, we still have nursing, and he is still has a g tube. He eats more solids, and we recently changed his formula to 1.5 cal Pedisure and altered his night time feeds.

Some new issues we are dealing with is something I am not prepared for which is Wyatt's interaction with his peers. Kids ask about his ECMO scar on his neck, they ask him why he runs differently and slowly, and he never wants to be bolus fed in public. I am telling Wyatt to be proud of his scars and that he was brave and a fighter and to use those opportunities to spread awareness. It's hard for a five year old to comprehend all of that. Peer pressure has power. I am sure Kindergarten will bring a new set of obstacles.... but if Wyatt can survive CDH and endure 8 major surgeries, five years of therapies and doctor appts; going to a big school will be no big deal:).

His personality and love of life is contagious and I hope that fire in him never burns out (even with peer pressure).

Sunday, October 7, 2012

Happy 5th Birthday to my miracle boy!

Dear Wyatt,

I could not be a prouder Mom.  Today is your birthday and I am so proud of the person you are becoming.  I prayed everyday while you were in the hospital that you would be a happy little boy and that is exactly what you are today.  In just five years, your experiences in life has surprassed many.  You seem wiser than your age, like an old soul.  Some people in life are not lucky enough to have a strong sense of empathy, but you do as a five year old.  When you interact with people, you quickly read them and their mood and you react accordingly.  You are sad when others are sad, you are happy when others are happy.  You are funny when others are funny.  You carry conversations that are simply amazing.  You are a funny boy!  Today, my smile is from ear to ear filled with happiness.  Something great has happened in my life and that is you!!  We celebrate you today.  

I remember sitting in the hospital thinking that I can not wait until you are five years old, thinking all of this will be behind us and I will never have to think of CDH again.  That is not the case, we live with CDH every single day.  Here I am sitting down at my computer at night while the house is sleeping just as I did every night when you were in the hospital, pouring my unedited thoughts.  I think this blog has become my therapy more than anything else.  It has connected me to people around the world with children and families going through the same experiences.  Today I update more on facebook, and those people around the world, that I have never met in person are now my facebook friends and we seem to know each other like we have always known each other. 

We have a new normal and I honestly don't know if we will ever have that picture in my head that I thought we would have, but that is ok because our highs and lows that we experienced in the past and will continue to experience has shaped our family and has molded you into the person you are today.  You are amazing! 

You are in pre-k, three full days.  You bring a lunch with you and you walk through those school doors so confidently and independantly.  When you started at preschool three years ago, you had to be carried in, you couldn't walk.  We had to carry an oxygen canister with us.  Not anymore, you are independant.  You also started to play sports.  Your favorite: t-ball and now you are playing soccer.  At home you play anything that involves a ball.  You are superactive and eventhough you may run a little slower and slightly differently, you run with all the passion that a five year old can have.  You also are in a music class and gymnastics and want to play sword fighting, pretend your superheroes and all the stuff a little boy wants to do.

We still go to PT, OT, feeding therapy. You are still on oxygen while sleeping, the food pump and pulse ox machine. Our dining room still resembles a hospital room. We still have a night nurse and day nurse. We look beyond that, it is all invisible to us now and one day will all go away, but we are no longer on any timeline. Whatever is best for you. We still move on with normal five year old stuff.

Happy Birthday my son. I love you more than anything and so proud of the person you are becoming.

Your Mom

Wednesday, June 20, 2012