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

Great-Grandpa & ECI

I went with my mother this past weekend to visit my grandparents (particularly my grandpa) in San Antonio. John is named after him and my father. John is my grandpa’s middle name and David is my father’s first name. So I was really wanting my grandpa to really get to meet John. The main reason I wanted John and him to meet was because my grandpa has pancreatic cancer.

Grandpa
Grandpa

My grandpa has stopped taking chemo because he wishes to do so.  He is extremely weak as well. I always remember seeing this kinda chunkier man when I would go visit them. Also pulling on his key-chain (he had a retractable key-chain that was attached to his belt), his Snap-On Tool truck, kolaches, his brisket and cabbage soup,…so many memories that I will always cherish. I love him and it was really hard seeing him the way he was this weekend. It was like he was himself but not at the same time.

While we were there he got to hold, talk and kind of play with John. I don’t think John will ever really remember those moments but they have been seared into my brain. It was hard to see him having those interactions with John, being that sweet loving grandpa that I remember. I even had a little meltdown inside watching him just hold John’s hand in his.

Holding hands with Great-Grandpa
Holding hands with Great-Grandpa

John loved being held, talking, & playing with his great-grandpa. John was full of smiles.

Great Grandpa & John
Great Grandpa & John

ECI came by Monday to asset John for his physical therapy. We already knew he had the muscle tone of a 2 month old and they confirmed it. The therapist wants to come 4x a month (1x a week basically).

Our goals are:

Within 3 mons to withstand tummy time at least 5 mins and rolling. Within 6 mons to have him move at least 5ft across the floor. Could be done anyway (rolling, scooting, crawling,…) as long as he moves the distance.

 

4 Generations
4 Generations

 

-Jacqueline

I can do all things through Christ who gives me strength. Phil 4:13

Checkups & Pulmonologist

Let’s talk about Joseph’s 4 yr well check up: He’s 31 1/2 lbs (13% Percentile) & 3′ 3.5″ tall (31% Percentile) The doctor thinks it wouldn’t hurt to have a speech therapist evaluate him when he starts pre-school this year. She also recommends having his tonsils removed. He snores and they’re rather larger. His pre-op appointment is … Read more

Joseph is 4yrs Old & More Appointments for John

Joseph turned 4 on Wednesday! There was a small party today with just us, the boys, Uncle Timmy, and my mother. Joseph was excited to turn 4 because he was getting his “cake”. Funny side note: He would stand on the scale and see 3, so he kept trying to argue with us that he was … Read more