OK, so WHY is Jaime still there...well, Andrew and I had another long discussion. We felt like he could come home, but probably should stay for another night. Jaime woke up in the middle of the night with some congestion, he's coughing a bit, too. They are just keeping an eye on him to make sure it doesn't turn into something worrisome. He also had a low grade fever late this morning and early afternoon. By tonight it was gone. If he gets worse, they will be running cultures, putting him on Tamiflu and keeping him until we leave on Wednesday for Cincinnati. HOPEFULLY, it won't come to that. I guess we can call that "Plan B."
Plan "A" would be for Jaime to come home tomorrow. He's still breathing fast and retracting. (You can see his retractions-his chest sunken in-in the photo with him being fed.) Andrew said that if I were a "normal" parent he wouldn't send Jaime home at all, but he trusts me and my ability to care for Jaime, so he just may do that tomorrow to keep him out of the germ-filled hospital. We'll see. Jaime is the one in charge right now. He doesn't get to come home until all of us are comfortable with it.
Now as for feeds....Jaime was hysterical (crying, screaming and desatting) because he wasn't aloud to eat by mouth...contrary to popular belief, the boy LOVES to eat. Anyway, the drs. had, Cheryl from OT come to "feed" Jaime. She gave him baby apples for the first time. He LOVED them...who would have thought? She felt like he did well and was "safe" to eat thicker foods. Now, that brought us to the bottle situation. Dr. Milgrim talked to Cincy and they agreed on a new plan. Jaime is to have nectar thickened liquids, Simply Thick is the only thickening agent we can use-no cereal. Jaime is to get 4oz of thick formula every 3 hours until 10:00 P.M. Then at 10, he's put on the feeding pump through the night-he's not getting nearly enough calories to grow. Now, the nectar is pretty thick and a bit hard for Jaime to drink, so sometimes he does not finish the bottles...if this happens, we have to gavage the rest of his feed (un-thickened) into his feeding tube. Kind of a crazy way to feed, but we'll do whatever it takes to make him grow. Jaime was measured at 12.12 lbs today and is 24 in. long. Obviously, the main goal is for Jaime to grow. He must gain at least 30 grams a day, this is not currently happening. He's been up and down...hmmmm....just like the CDH roller coaster. He's also treading on that fine line between safely eating versus aspirating. There is still some talk of inserting a g-tube...hopefully Cincy will be able to determine if this is a true need next week. Jaime has a ton of appointments down there between next Thursday and Friday. The bottom line is, hopefully by the end of next week we will have some much needed answers!
Here are some pics from today.
Cheryl feeding Jaime apples. She's pretty great, we love her!
Marie doing Jaime's CPT.
Marie doing Jaime's CPT on his back, he loves it!
My boys...notice who was dressed to come home! :-(
Well, that's all for tonight...hopefully we'll have a good day tomorrow, so that Jaime can come home!
Have a nice weekend!
I am praying for Jaime to get better soon :) He is just the cutest little guy !!! He looks like his cutie big brother :) Sending tons of prayers your way !
ReplyDeleteChristy Michel