Our 2nd Home “Hotel McLane”

Big Thanks! Thanks everyone for the prayers, texts, calls, and messages over the past few days with John being in the hospital. It wasn’t anything we expected or even wanted obviously. He had been sick for most of the month of April. Antibiotics on April 4th, and then again on April 13th it just felt … Read moreOur 2nd Home “Hotel McLane”

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 moreMay 27th – Homecoming?

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 moreMay 26th – Tired

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 moreMay 25th – Backwards

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 moreMay 24th – Up

May 23rd – 8.5

John put on another 40 grams this morning which brings him up to 8.5lbs. Nothing really new. We’re still waiting on a few test results. He did vomit at one of his feedings, but no adjustments have been made. They wanted to see if he’d tolerate the other feedings. Hopefully it doesn’t affect tomorrow’s weigh-in. -Thomas thomas@thomasmiller.me

May 22nd – 8.4

John gained 40 grams last night. This brings him back up to 8.4 lbs. His GI doctor believes his slow weight gain my be metabolic or genetic related. A stool sample has been “donated” to check for malabsorption issues and a few other related issues. The ENT doesn’t believe he will require oxygen when he returns home, but he … Read moreMay 22nd – 8.4

May 21st – 30 Grams

John gained 20 grams from the night before. Normally for a child his age that would be fine. Since he’s far behind in weight they’re asking for 30 grams a night and he must do so for two days in a row. To accomplish this they’ve adjusted his feedings again. He needs to finished all that … Read moreMay 21st – 30 Grams

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 moreMay 20th – Esperamos