Catel-Manzke Syndrome: Our Journey

The road to adding John to our family was a long and difficult one. Thomas and I actually just decided to start trying right before Joseph turned 2 yrs old. Right as we decided is when we learned we were having our first of several miscarriages. We finally learned we would be welcoming a healthy child … Read more

Hurricane Harvey

Some of you may know, I have recently started helping admin a group that is globally known. It is Mom of Trach Babies. This is a support group for parents of trached children. I have been apart of this group for quite some time. However, recently I became apart of the admin team. Since I … Read more

A Night in “Rocket Town”

John_CPAPpre
Doesn’t he look like an astronaut suiting up?

At the moment John is still at Texas Children’s Hospital in Houston. Last night he slept while using a CPAP. It was intended to provide some assistance until a second sleep study could be scheduled. He slept well for the most part, but did wake a few more times than normal. I would too if I had a mask on my face.

JohnTongue

Tonight, they’re going to perform a second sleep study. This time they’re going to focus on running titrations to determine how much air pressure he’ll need to maintain consistent breathing and reduce apnea events. If the results from tonight’s study are less than desired the doctors will regroup. Basically the next step would be surgical and would take place in Temple at McLane Children’s Scott & White.

JohnJacqueline

As positive as we’d like to be, we’re mostly apprehensive and slightly skeptical. We by no means mean to sound pessimistic, it’s just that when he had his extended stay in May, there were so many times where we assumed the best and were disappointed when we were met with the worst. With that said, hopefully it’ll go well.

TexasChildrens
Texas Children’s Hospital – Houston, TX

I haven’t had much time to explore this hospital. Jacqueline drove home Wednesday evening, then we both drove back that same night. I slept in the room then left early Thursday morning. From what I did see, it’s a little larger than McLane. One section that stood out was the design.

It has a whimsical, bright exterior. That’s the neat part. The not so neat part is that the front of the building is slightly concaved with many reflective windows. Stand in front of those windows and you get the feeling you’re standing in front of a giant solar oven.

Texas Children's Hospital (Front Exterior)
Texas Children’s Hospital (Front Exterior)

 

 

Here We Go Again…

Last night John had a scheduled sleep study at Texas Children’s in Houston. Both Jacqueline and he were scheduled to depart for College Station this morning around 6:30am. During the sleep study it was determined that he had several severe apnea related events. There were enough to contact the on-call doctor as our results would … Read more

Sleep Study

John's Sleep Study

Tonight’s the night! We’ve waited for what seems like months for this night. John is finally having his sleep study at Texas Children’s in Houston.

He’ll monitored until 6:30am. The above photo was taken before he was connected to their wiring and a nasal canula for O2. The staff says he’s the youngest patient they have tonight.

They’ll be looking for apnea events as in how many, how often, and severity. We’ll hopefully have the results by next week.

That is all.

-Thomas
thomas@thomasmiller.me