We have a #TrachBaby

October 1st, 2014 – John is doing very well. His breathing has improved exponentially. He’ll be in the PICU at McLane Children’s for at least a week, which is standard with trach surgery. After a week, he’ll then be moved to a regular room and remain there until his doctors are comfortable with our training … 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

May 28th – HOMECOMING!

He’s home! It’ll still be a struggle, we have more follow-up appointments and additional testing. We also have a new electronic friend in the apartment. Unless anything changes, we don’t plan on nightly updates. Also, we’re switching to a new website, www.millershewrote.com (Get it? Like the show!)

May 27th – Homecoming?

John put on about another 60 grams last night. Woo! The surgeon was finally able to evaluate his g-button site. It was determine to be just a little too large for him, so a smaller tube was placed. How they managed to replace it with a smaller tube without surgery is a miracle to me. I … Read more

May 26th – Tired

John did manage to put back on about 60 grams at today’s weigh-in. His surgeon was never able to inspect his g-tube site so it’s unknown if there are any issues referring to the leakage and balloon losing water. That should happen tomorrow. There is a glimmer of hope he may get to go home … Read more

May 25th – Backwards

Remember those 140 grams he gained over the past few days? Well, he’s lost them at today’s weigh in. This is a big reason why I don’t like to get too excited. Cautiously optimistic, but rarely overly excited. He’s back to 8.4lbs which is what he weighed on 5/22 I wouldn’t read into thinking we’re depressed, … Read more

May 24th – Up

If the information is correct, John gained 100 grams last night bringing him up to 8.12. Our conversions may be off. We’re having to convert kilos to pounds. Long story short, he’s up a lot today, more than what they’re comfortable with because he was starting to reflux and he vomited this morning. For those into … Read more