Praise the Lord!

Praise the Lord!

John’s sleep study has finally been scheduled! We have also managed to get it scheduled a lot sooner than Texas Children’s was giving us originally. When I called on Monday to see if they had started scheduling I was told I had two options.

1) I could go to the main campus and wait till October/November (like we had originally been told).

OR

2) I could go to the west campus and have it scheduled for August/September.

We went for the west campus. On August 26th at 6pm we have to report to Texas Children’s West Campus in Houston. I am extremely excited that we have managed to get this scheduled. It feels like a huge weight of uncertainty has been lifted off my shoulders.

Nurse & Patient
Nurse & Patient

My mom has officially moved down as of Sunday to take the position at Angels of Care to take care of John. It is nice having her down so she can help with him. Another plus is she gets to spend some time with her other grandsons.

Now the search is on to find a bigger place since we needed one before she moved here. So please pray that we may find one in our price range as well as a sub-leaser for our place at the same time.

-Jacqueline

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 20th – Esperamos

We didn’t see any weight gain this morning. That’s the most frustrating part. His doctors have increased his overall intake to see if this helps. In order for him to go home they’re looking for two consistent days of weight gain, back-to-back. Each time there is a setback the clock resets. Overall he’s actually in … Read more

May 19th – Stumped

Well, so far nothing really new. He did gain weight last night, but it wasn’t enough for him to be able to leave. His team wants to give him another night of feedings and check his weight again in the morning. If no significant weight changes, then the team will make more feeding adjustments. The … Read more

May 13th – Improvement

John gained weight last night. He went from 7lb 7oz to 8lbs 1oz, but he’s still going to need a g-button. He’ll remain on the continuous feed for tonight until 5am, then all food stops. He has an MRI scheduled for 10am and surgery for the g-button implant at noon. He had a swallow study today, and passed. … Read more

May 12th – Another Surgery & More Tests

John needs at least 18oz of milk in a day. He’s supposed to have 2oz every 3 hours and whatever he doesn’t finish within 20 minutes will go down his feeding tube. He’ll begin continuous feeds Monday night (tonight) at a rate of 1oz per hour. This will be a daily routine each night from 8p-8a. … Read more

May 11th – G-Button

John - May 11th
John David Miller – May 11th, 2014

Nothing really new today. John’s dayside doctors didn’t calculate his calorie/volume to determine if he’s taking in enough so this will be calculated tonight. They are expecting to make a decision on Monday whether or not he’ll need a “g-button” (surgically implanted feeding tube).

Read more

May 9th – “Meyii”

John is continuing to improve with his feeds and breathing. We’re still waiting to see how the procedures have affected his weight gain. Thursday (today) was the first full day of his new feeding schedule. He’s currently on IV fluids and oxygen, although both are expected to be decreased and removed within the next few … Read more