11 Oct Lookin’ Good
Well, Keegan’s had a pretty good day. He started with a chest x-ray and complete echo. His chest is clear. The echo showed his heart’s function is great, and the clot in his right atrium hasn’t changed in the last week. We would love to report that the clot has gotten smaller, but staying the same is good too. It hasn’t grown. Keegan will remain on a blood thinner for the next 6 weeks or so to prevent it from getting bigger. We are hoping his body will absorb the rest of it slowly.
We’ve not made much progress on the bottle end. He’s now trying the bottle with each feed (only getting about 5ml at a time), and he’s up to 45ml per feeding. He “eats” every 3 hours through a syringe that pumps the formula through his ng tube directly into his stomach over a period of 2 hours (so he eats for 2 and then waits an hour before starting the next). We’ll stay at that amount and slowly decrease the time each feed takes. Hopefully he will start to eat more from the bottle as the time of each feed decreases, since he will start to actually feel hungry. He is now also taking all of his medications by mouth – a big improvement since some of them taste awful!
Today was the first full day where Gray and I were responsible for Keegan’s feedings and medications. We’ve finally got a workable schedule for both. Keegan will have 11 medications each day, given 6 times a day. After about 1 year, he will be down to 3 or 4 maintenance meds which he will take at least 2x a day for the rest of his life. Some of them are immunosuppressants; some prevent infection, and several others for a variety of things. It’s quite overwhelming for us. Imagine how it must be for him!
Tomorrow we take our “test” about transplantation. If we pass, then we’re still on schedule to go home Friday!! It’s important to go home as soon as it’s reasonable because the risk of infection increases the longer we stay in the hospital. Right now, Keegan and Daddy are passed out on the couch (I snapped a pic and will post soon). It’s been hard to keep either of them awake today! I think Gray planned it so that Keegan and I will be up all night! Please keep praying for continued tolerance of his feeds and meds so that we can go home Friday. I think we can all agree it’s time for Keegan to go home! Have a good night, y’all.