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 more

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 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 18th – Continued Prayers

John’s weight dipped lower again, but he is on continuous feeds at night and will remain so when he gets home. His last breathing treatment was at 6a with no need for another one so far. His breathing sounds much better. He is continuing to receive steroid treatments & antibiotics. He’s been eating fairly well, but whatever is leftover … Read more

May 17th – “Aunt B” and Uncle Dustin

“Aunt B” & Uncle Dustin stopped in today! John is on continuous feeds at 1 ounce per hour at night . He’s expected to remain on this amount when he comes home. Today he was tested to see how he would do on bottles. He did fairly well. His doctors would like to step up to … Read more

May 16th – Respiratory Infection

John gained a small amount of weight, but feedings have resumed so we expect to see better numbers over the next few days. His RVP results came back and he tested positive for human metapneumovirus & rhinovirus. Both are similar to the common cold, but are dangerous for infants if untreated. He’s had a few breathing … Read more

May 15th – RVP and Coughs and Pedialyte, Oh My

John’s weight remained the same, but he was also on a restricted diet and wasn’t allowed a full feeding due to his surgery.He’s currently receiving 7mils of Pedialyte® through the tube an hour to keep him hydrated. We’re hopeful his weight gain will continue after normal feeding resumes on Friday. His geneticist is running additional tests … Read more

May 14th – Surgery Day (again)

John gained a little more weight this morning, from 8lbs 1oz to 8lb 6oz, of course he also had surgery and can’t really eat for 24 hours, so yeah… about that. His g-tube was implanted successfully this afternoon and he’s resting well, aside from being hungry. He had an MRI to check for signs of … Read more