This past weekend was really lots of fun for both Soph and I! I got to go home and surprise Scott and the kids for their first swim meet and Soph got to spend the weekend with Grandpa & Grandma at the hospital! On Saturday Soph got a platelet transfusion. She was also started on a new medication to help control her blood pressure. Since being weaned of clonidine they have been increasing, however, with this new med they seem to be turning back around. Sophs weight continues to increase. Over the past 3 weeks she has gained ~5 lbs!!! Thats a lot, especially for a little girl. The consensus is that this is fat weight gain and that its not helping her, so...they are decreasing her lipids a little more and also adjusting the amount of dextrose in her tpn. They will have to keep watching her blood sugar for a little while to make sure it doesnt drop. Hopefully they can find a happy medium between her getting the nutrition she needs without overloading her too much. I know my back would appreciate it! Today during rounds Dr. Vitola threw out the idea of discharging Soph to the Ronald McDonald house in the next week or two. Initially I thought it would be great!!! Id love to get out of the hospital (no offense to our wonderful team reading this...we love you!)!!!! Then I started thinking...we would still have to come back here every day between her therapies, labs, infusions, etc... So would it make a difference? I dont know. I feel it would only be a matter of time until she would be admitted again. Meds would be really time consuming, even though theres not supposed to be there are sick people there too, I would have to take her out in the cold every day for appointments and I dont have any warm clothes or a jacket that fit her!!! Im not sure what will happen yet. It was just an idea-something to think about, which is exactly what we need to keep doing. Other than that Soph had a good day being her sassy little self! She fell asleep so nicely watching Frozen (usual bedtime ritual) and Im hoping that she doesnt start fussing to early tomorrow morning. We still have not heard back from UNOS about Sophs PELD exception letter. They have 21 days to reply and I believe we are at 10. Stay tuned!
Posted on: Tue, 04 Nov 2014 04:47:44 +0000
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