Team Maggie Update Day 33
Here's the latest update from Mom, Lauren
Just wanted to check in and let everyone know that Maggie has had a great weekend! We went to the park and she had fun blowing bubbles and playing pass and just sitting on the blanket watching other people and the swan boats in the public gardens. She has been lively and full of energy!
She still is not eating or drinking much but does ask for snacks more often. Even if she only has a bite here and there it makes me happy. Doing the 14 hour tpn infusions every night is really not very fun. I have to plan it around what time she needs to be unhooked by in the morning and the pump/bag is very heavy so I have to follow her and carry it wherever she goes. Not to mention I am paranoid about air bubbles in the line and keeping her central line free of any and all germs! Will be so nice when she is eating and drinking enough to stop it or cut back a little.
She is taking her meds ok. It has become a bit of a battle. Last night (Saturday) she threw up her cyclosporin immediately which meant I had the not fun task of making her take it again. They made me try that med in clinic on Friday and I am honestly shocked anyone can take that med and keep it down. I had the smallest drop on my finger and I was gagging. Kudos to maggie and everyone else out there who has to go through this..not sure i could do it. I feel so bad making her take it but know how important and vital to her recovery it is.
We have clinic bright and early tomorrow morning (Today, Monday) and she also has an EKG tomorrow (Monday). I will update tomorrow sometime (Monday)! Our love to everyone!!