Surgery #2

"Operating on a child that looks this good is always a difficult decision to make".

We are big fans of Dr. Sandberg. He's been Kyle's surgeon since before he was born and has always been straightforward and honest with us. So when he told us that the decision to operate again was a difficult one but that the risk of waiting now outweighed the risk of a second operation, we knew it was time. It was a hard choice to make but we believe that it is the right one. 

Kyle's second surgery has been tentatively scheduled for early Friday afternoon. His MRI on Tuesday showed more cyst growth and enlarged ventricles (the fluid filled spaces in the brain). The goal of this surgery is to better connect the cyst(s) to the ventricular system of the brain and to coagulate parts of the choroid plexus- the part of the brain that produces spinal fluid- so that he doesn't produce as much fluid. The surgery is very similar to his first. It will be endoscopic and preformed through a small burr hole in the back of his skull. His recovery time in the hospital should be a brief one or two night PICU stay and we are hopeful his recovery will be swift and complete. 

Please pray for the following-

* That the surgery is successful and eliminates the need for a shunt.

* Kyle's medical team. Specifically rest and steady hands for his surgeon. 

* That Kyle's discomfort is minimal and that he recovers quickly and completely. 

* Zero post-op complications. Pray for zero infections and against a subdural effusion/hemorrhage. 

Thank you!!!!

17 Evening, morning and noon
    I cry out in distress,
    and he hears my voice.

Psalm 55:17

Miracle Baby

I usually dread seeing Kyle's neurologist. She hasn't always been very positive about Kyle's long term prognosis. She told us before he was born that he'd be at high risk for a multitude of issues, mainly epilepsy (possibly retractable- meaning not able to control with medication), cerebral palsy and developmental delays. She said it was possible that he'd have milestones that he'd never hit. That he could be severely intellectually disabled and unable to ever care for himself. He might not talk. He might not hear or see. 

Today was different. She said seeing him was the highlight of her day. That she'd never match his MRI scans to his current abilities. That he is a "miracle baby". 

We agree. "Kyle" in Yiddish means "victorious". We didn't know this when we chose his name but it's something we've clung to since first receiving his diagnosis at 28 weeks pregnant. Our baby boy would be victorious. His life mattered. No matter what. 

On Tuesday he will have a MRI and MRA. The MRA is to look for any recent ischemic events. Three weeks ago, I found Kyle in his swing looking like this...

Only half of his face seemed to be working. We took him to the ER and the asymmetry had already faded away. He was sent home. Today the neurologist noticed that his left leg is smaller than his right and he doesn't seem to be using his left side as effectively as his right. He can freely grab objects with his right hand, but has problems grasping things he wants in his left hand. It is VERY unlikely he had an event, but we are looking anyway. And she wants the 23 hour eeg to rule out seizure activity. 

Thankfully, we've managed to stay out of the ER since our last neurosurgery visit. We see the surgeon again on Tuesday and will be celebrating this feat. I feel like Kyle deserves a medal, but "miracle baby" will certainly do! 

What's next:

-MRI/MRA/Neurosurgery appt Oct 28

-23 hour EEG to be scheduled 

Happy October!

Baby Kyle is doing great! He's a happy little boy. He can roll both directions and sit using his hands for support. His physical therapist even said she thinks he is trying to shuffle forward when he is on his tummy! He will be six months old next week and we can hardly believe it. He is such a JOY. 

He LOVES the neurosurgeon's office. It's a good thing since we've been seeing so much of him lately! Last week was an eventful week. Kyle spent another night in the hospital for observation with vomiting. Thankfully, he improved and was able to come home. His MRI though showed an increase in both cyst and ventricle (fluid filled spaces in the brain) size but a decrease in the amount of fluid/blood surrounding the brain. 

A lofty goal! 

He had a follow up appointment with the surgeon yesterday and we discussed his surgical options, if surgery becomes necessary. Kyle's hydrocephalus is a little more complicated than the typical case and a shunt simply isn't a good option for him. So, our next step would be a second surgery similar to the first, where the surgeon will try to accomplish what he was unable to accomplish the first time by going in at a different angle and from a different position. 

Our hope is that Kyle won't need any surgery. If he does, we hope and pray the second surgery is a success and that it will eliminate his need for a shunt. His next MRI is in three weeks and we are hopeful that he will have a restful and uneventful break between appointments.

Thank you for your continued support and prayers. Kyle is a well loved little boy!

What's next-

-Neurology follow up Oct 22

-MRI and Neurosurgery follow up Oct 28

-Continued physical therapy bi-weekly

Hydrocephalus Walk

Go Team Kyle! We raised over $3,000 at our first annual hydrocephalus walk! It was held at the Houston Zoo and the kids had a blast. We came home with all kinds of goodies: Memorial Hermann water bottles, a brain shaped stress ball, hydrocephalus bandana and an awareness ribbon for our van. Most importantly, we were able to connect with other hydrocephalus families. 

Kyle is a little too young to appreciate the zoo but had a blast seeing his family and friends. Thanks so much to everyone who supported Team Kyle. We love y'all! 

What's next for Kyle? 

- Kyle continues to have biweekly physical therapy sessions through ECI.

- He has a MRI and neurosurgery follow up on October 7. 

- Follow up neurology appointment on October 23rd. 

Baby Pukes-a-lot

Another week, another ER visit. 

On Monday, Kyle was sleepy and pukey. So, we made another trip to visit our ER friends and had another MRI. The last MRI showed a return of Fred but also a decrease in the fluid/blood collection around his brain. This MRI showed a similar cyst size but also a second cyst growing beneath Fred. 

Kyle's surgeon is "concerned". We've learned over the past few months that the surgeon has three levels of concern. "I'm not worried" means, "yeah, there's something abnormal but I don't think we'll need to operate anytime in the near future or maybe even never". "I'm concerned" means, "Prepare yourself. We might need to operate soon". And "I'm worried" means.... well, we don't want to know what that means. 

So, he's "concerned". Darny darn darn DARN. 

On the bright side, he's "hopeful" that we can still avoid the OR. We're hopeful, too. It's nice to have a hopeful surgeon. We aren't complaining there. 

So the plan is to have a follow up MRI in four weeks to see if there is further cyst growth and go from there. I'm worried and I'll admit even a little scared. I don't want my baby to have a second brain surgery. I don't want him to have ANY surgery. 

Lately I've been asking the why question. Not the genetic logistics of how this happened but the spiritual "why did this happen???". And I've learned that "why" is a joy stealer. A theif. A common criminal. It takes joy and turns it to pain. And it takes the focus away from the questions we should be asking. 

Like "who". Who is my child? Kyle is a child of God. A child born into this world with a purpose and a plan. What is my child? He is a happy little boy who loves to smile, laugh and play. He smiles at everyone, even the tech that straps him onto the MRI table.... over and over again. He smiles at the nurse that starts his IV. And at the surgeon that decides if or when he will have to endure another operation. In the words of big brother Michael, he is a delight. 

And we are thankful. 

Great looks. Bright future. We believe it!

A MRI, Hospitalization, and Visit From Fred

We missed Kyle's weekly ER visit last week and couldn't stand being away from the medical center so long so we packed a bag and headed to the ER to say hi. We had such a good time catching up with our favorite MRI techs, residents and surgeon that we decided to get a room! Such fun! 

Not really. Kyle is vomiting. This is our third ER visit and second hospitalization this month. Not that you would ever see any emotional distress from Kyle. He laughed when he was strapped onto the MRI table and smiled when it was time for his "just in case" pre-op bath. He's been cooing and flirting with his nurse. He probably thinks the surgeon is his uncle and the MRI machine is a fun photo booth. 

I'm not doing as well. I'm tired. And worried. His MRI showed an increase in cyst size. Fred is back and wreaking havoc again. We were admitted last night and told it was possible he'd be back in the OR this morning. Thankfully, the vomiting improved overnight and it looks like we'll be going home this afternoon with a follow up neurosurgery appointment in one week. So, no surgery today. But maybe surgery next week. Or the week after that. Or the week after that.... sigh. 

We knew that life with Kyle would be an adventure. It's one we eagerly signed up for and would sign up for over and over again. He's such a joy and blessing. Just one snuggle from this sweet boy makes every moment spent in the ER, hospital, surgeon's office and OR waiting room absolutely worth it. We continue to put our hope and trust in Jesus and eagerly await the day our sweet boy can put the MRIs and surgeon visits behind him. God has big plans and a bright future in store for Kyle and we are so very proud of him. In the meantime, we continue to pray for peace, healing and rest. 

An Eventful Week

2 ER visits, 2 MRIs and one hospital stay. It's been a busy week. 

The fun started last Monday when Kyle woke up vomiting. A little bit of throw up isn't a big deal for most babies but it can very easily mean an ER visit for us. Once we hit the 3+ mark, Kyle was sent in to the ER by his neurosurgeon to be evaluated for increased intracranial pressure (read: another MRI). The MRI showed an increase in the fluid surrounding his brain and a "tiny" amount of blood but no signs of ICP. He was diagnosed with viral gastroenteritis and we went home. 

I spoke with the surgeon the following Monday about some concern over the bleed that showed on the MRI. He again assured me that it was inconsequential and everything was stable. Tuesday morning I left the baby to nap in his bouncer while I attended to the older boys upstairs. When I returned to check on him, I noticed he was not breathing and he did not immediately respond when I tried to arouse him. My screams finally startled him and he began breathing again. I put him in the car and headed back to the ER to be evaluated. They put in an IV and drew labs. Then we were sent for another MRI, which showed no increase in fluid but an increase in the amount of blood in the subdural space. Kyle now has bilateral subdural effusions that are mixed with blood -- but no ICP. (This was not the cause of his apnea spell but it means more frequent appointments and scans and increases the chance that he will need surgery to drain the fluid). All of his labs then came back clean and he was admitted overnight for observation. His neurologist came to visit the next afternoon and said that she believed he had a seizure. We are now awaiting a call to schedule a 23 hr EEG and are hoping and praying that this is not the case. In the meantime, we are keeping a close eye on him at home. He sees the surgeon again on Tuesday and has another MRI in four weeks. 

Kyle takes it all in stride and remains a very happy baby. We long await the day his MRI comes back clean and he doesn't have to spend so much time in doctors offices and in the hospital/ER. Until then, we are grateful for his medical team and that we live so close to the Medical Center. We really are blessed and believe that God has big plans for our sweet boy!