Team Maggie Update Day 23
The toughest thing about having your child sick, is that things can be progressing so well, and then something happens that comes along and throws a monkey wrench in the plans.
That was the case this morning, after a great day yesterday. Maggie was having a platelet transfusion this morning, and had a reaction to it, such that they stopped the transfusion and consequently felt pretty awful for a bit.
And here’s the report for yesterday
Maggie had a good day on Thursday. Her white count continues to climb but they have now stopped the G-CSF (this is the hormone that boosted the white blood cell production) so most likely in a couple days we will see it start to go back down, which is ok. Her hemoglobin has been 8.6 for 4 days. She’s definitely making some red cells if she’s not dropping which is so exciting! I’m waiting for today’s labs to see where we are
The biggest issues we are having is her blood pressures and oral meds. Yesterday she has very very high blood pressures all day. They gave her an additional blood pressure medication around noon and increased her clonidine patch and her blood pressure still did not lower enough so around 6 or so they had to give her another oral med for blood pressure. They finally came down and although they are still high for her they are much more stable. Hopefully it will stay that way.
She continues to have a very difficult time with oral meds and threw up her evening med Wednesday night. It sounds like our nurses are pushing our doctor not to give Maggie the tube in her nose because they don’t think Maggie will react fondly to it (who would??)..so that’s apparently going to be a big discussion today (Friday). If she doesn’t get the tube she has to learn to take her oral meds. We haven’t tried switching her to oral cyclosporin yet and that one is my biggest concern. She HAS to take that medicine twice a day and if she throws it up she has to take it again. It prevents rejection of her new marrow so it’s very important and they check her levels to make sure they are level. She’s been on a continuous iv drip of it but has to take it orally to be discharged. Well apparently it’s the nastiest tasting medicine on earth. Apparently a lot of kids throw it up and it’s just a nightmare to get them to not only take it but keep it down. Add to that a very very stubborn and strong willed little girl and its not going to be easy. I’m hoping she will shock us and do great with it.
So, Team Maggie, it’s time to spring into action. We need to pray that Maggie can stomach this oral cyclosporin. We have to pray that she can gag her way through it, so she can be discharged to the Neeley House. We have to pray that she doesn’t need the nasal tube, and can develop a bit of an appetitite!
On a good note, the family continues to be showered with letters and gifts, and for that they are eternally thankful. As Lauren says, she wishes she could respond to everyone right away, but as you can imagine, it’s taking all of her energy to deal with the day to day recovery and healing process.
Don’t forget the Team Maggie Fundraiser this Monday at Miguel’s Mexican Restaurant in Bangor. All the info is HERE.
Check out the cool signed autograph print Maggie received!