Well, we were hoping to have posted a great big happy "We're outta Here" note but that wasn't meant to be, I guess. This week was pretty much trying to get the right combination of medicine to control pain which was trickier then expected. Since Mikaela's liver and kidney aren't able to process efficiently as healthy organs can, there are not too many options. We tried morphine but giving a dose big enough to help the pain made her sleep most of the time and also made her VERY ITCHY -neither side effect is how Mikaela (or probably anyone for that matter)would like to spend her days. So, the doctors looked into fentanyl options-patch, lollipops, oral swabs. But, it turns out that the patch only comes in a dose that would be too high for her and the other options are VERY hard to get since fentanyl is highly restricted drug. Next choice-try oxycodone. This seems to be working pretty good-still causes some sleepiness but not unbearable. Also it doesn't seem to take the pain level down much past a 5 (on the 0-10 scale) but I guess that is better then an 8 which is where the pain has been going to. I guess we are at the point now where the pain may not get down much below the 5 for any long amt of time until Mikaela is able to have her transplant. (that is on her list of questions for Pittsburgh-as she is really hoping she is not going to continue to feel this bad until her transplant).
With all that seeming to be set, we were pretty hopefull to be going home today. We had Mikaela's ammonia rechecked yesterday as reassurance to her that is was in the "normal" range (which it was at 29). She is feeling a bit nervous that something like that could happen again after we get home-who can blame her it is scary when you can't remember bits of time. It is also different for her to think about going home with her pain level staying at about a 5 since usually she is discharged with a lower pain level, a smaller, softer tummy and no fever. Speaking of fever, that is why we had to stay tonight. The past 2 nights, Mikaela has had a 101ish fever about 1:30am. Both nights it went away within an hour or hour and a half but they didn't feel comfortable sending her home without checking out causes first.
It turned out it was probably a good thing we stayed as Mikaela's belly pain stayed pretty strong and was showing up in a new location (her right side, going around to her back). She had blood cultures done & got her PICC dressing changed-always an UNPLEASANT event. :(
Mom and Luke didn't get the message we weren't going home today after all so, they showed up about noon to help us take things to the car (you collect quit a bit of stuff being in the hospital for almost 3 weeks-maybe this is just preping us for when we have to be in the hospial for the transplants). We had fun hanging out for a few hours before they left about 4:30. Mikey and Shelbie came up from about 8:45-11. Shelbie is a big hit up here with the staff-we've learned that there are several dog owners amongst the nurses and doctors here on Baird 5.
It is almost 2 and Mikaela seems to be resting pretty well, so far-no fever (knock on wood). And since it is almost 2-WHAT THE HECK AM I STILL DOING AWAKE! Good Night.
PS- I just have to say the nurses here are pretty awesome. Besides taking wonderful care of our sweet baby girl, I just got 2 homemade chocolate chip pumpkin cookies and a slice of homemade pumpkin bread delivered to me for a midnight(ish) snack. :)
PPS-We have rescheduled our appt. in Pittsburgh for next Wednesday (Oct. 27) morning. So, we will be flying out on Tuesday.
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