Today Ambrose was admitted to Phoenix Children's Hospital. We have been waiting a week for a non-surgical bed to open and today we got the call. At last week's appointment with his GI Specialist, we were told that the doctor would like an endoscopy to be done, some biopsies of his esophagus, stomach, and small intestines, and a possible feeding tube switch from a G-tube to a G/J-tube. The Nutritionist said that their office sees the "worst of the worst" and they consider Ambrose to be one of the worst they currently see.
Over the last nine months, we've struggled to find a formula that Ambrose can tolerate. He would vomit after every feed. In December, he was switched over to goat's milk and tolerated it well. He gained weight and, for the first time, took an interest in feeding by mouth. However, the Nutritionist urged us to go back to the formulas, because he said the goat's milk is not considered a proper, whole nutrition. Although we supplemented the goat's milk with the missing nutrients, the protein content is more than recommended and could potentially harm his kidneys. The GI and Nutritionist have ordered numerous formulas for Ambrose, but with each formula he continued to vomit after every feed and refused to take any food by mouth. He's also lost weight with their plan of care. Last week, after another weight loss, there was a heightened concern for his nutrition and hydration. That was when the order was written for him to be admitted to the hospital.
After last week's appointment, we gave him Pedialyte for 24 hours, then reintroduced the goat's milk. He tolerated it well and even began to show interest in oral feeding. Tomorrow we'll have a better idea regarding the plan of care for this hospital stay. We will alternate shifts staying with Ambrose.
Ryan's mom discharged from rehab a few weeks ago. She has been receiving nursing and therapies in her home. She has been to the Oncologist and received the results from some scans done last week. The MRI showed five spots on her brain and also cancer around her lungs. In the last two months she's been told the cancer was in various places. After many tests, they have still not pinpointed the primary source.
All the other boys are doing well. Charlie is very close to walking. He's really good at sneaking up the stairs. Josef is starting his terrible threes a couple months early. The other day, after asking him to go get his pajamas from his room, he said, "Why do I have to do everything?!" Of course, we know which brother he learned that phrase from....or maybe it was from Gina. Ambrose started crawling a few weeks ago, despite the pelvic brace, feeding tube, and being tethered to the oxygen tank. John Paul tested for Kindergarten this week. On Thursday, April 29th, we will celebrate his 5th birthday! He's been counting down the weeks and days.
We'll try to update as much as we can with Ambrose's status.
Ryan and Gina