First of all, I want to say thank you to everyone for their prayers, support, and concern for Ethan. Having friends, family, co-workers, and a school and church community that care so much is truly touching.
Most of you on this list have been getting updated frequently, but I'm forgetting whom I'm telling what to at this point, so I thought I would provide a summary of events for those who haven't heard, and an update for those who have.
Here's the rundown so far (from the beginning):
1. Ethan has not gained weight since his four month checkup (he's now eight months old), and three weeks ago was diagnosed with RSV, double-ear infections, and bronchitis. Since December, he has been losing weight, culminating last week with daily weight loss. At four months, he weighed over 15 pounds. Today he is somewhere around 12 pounds.
2. Ethan was admitted to Phoenix Children's Hospital last Saturday, March 20th and was diagnosed with "failure to thrive" and wasn't receiving the nourishment he needed. Even though he would consume the correct amount of formula every day, he continued to decline in weight and became more and more lethargic, sleeping most of the day and night.
3. Since admission, he has undergone a series of tests including blood, sweat (for cystic fibrosis), and urine analysis, chest and stomach x-rays, a radiation swallow test, and a test for pancreatic function. Primary organ function remains good (brain, kidney, liver) other than some signs of dehydration and lack of nutrition. We are still waiting for the results of the pancreatic function and the cystic fibrosis.
4. It was determined that he does have some issue with pulmonary aspiration (food going into the lungs), though it seems very minor and should be fixed by thickening the formula mixture. This doesn't answer the primary problem of why isn't he absorbing nutrients from his feedings, but it is at least something that was answered in a week that is filled with many more questions.
5. He is currently on an IV, feeding tube, and a catheter at times. He has not been going "number 1" regularly, with stretches longer than 22 hours, sometimes even with IV fluids.
We have been trying to feed him by bottle first, and if that doesn't work, they put the formula mixture into the feeding tube.
6. Last night (Tues, Mar 23), they put him on an all-night drip to get him food over 8 hours. Even with the all-night feeding, he lost more weight.
7. Today (Wed, Mar 24) things got a bit worse. We tried to feed him in the afternoon, and he began gagging immediately with the bottle. When the formula was put in via feeding tube, he began vomiting so heavily that it required nurse and GI doctor intervention. They let him go to sleep, and tried to get food into him while he was sleeping through the feeding tube, and he awoke and began vomiting heavily again.
8. As I type this at 10:20pm, I just got off the phone with Robin. They are again trying a very, very slow drip through the feeding tube for 10 hours this time. If he awakes and vomits in the night, he will have to go on full IV's for hydration and nutrition, and will undergo a GI scope (up and down) tomorrow.
So that's what I know so far. We have been receiving food from the church, and our friends have been more than gracious to help out with our other three boys whenever necessary. There is nothing that we are in need of at this time other than prayers for Ethan and Robin, who hasn't left his side and sleeps on the hospital couch/bed next to his crib. She has been a pillar of strength, and hasn't said a word about her rheumatoid arthritis, which I know is bothering her.
Again, I can't thank you all enough for your continued support and prayers.
Sincerely,
Matt
on behalf of Robin, Jacob, Nicholas, Andrew, and Ethan
No comments:
Post a Comment