Hello from our room with a view..
Madison has continued to recover beautifully and is doing well. I am completely amazed at our miraculous journey thus far. Everyday, I witness miracle after miracle after miracle with our little girl. And everyday, I find myself so humbled and thankful for the way things have turned out.
She is my tough little girl. I find myself falling in love with her more and more each day. I always tell her that I'm so sorry for all that she has to go through. Her poor little legs and arms are black and blue from being poked. She is officially scared of anyone who walks in her room. From the beginning of our doctor's appointments, I chose to always be honest with Madison. I tell her either 'owie or no owies.' She completely understands and I feel as though it better prepares her for when the owies do occur.
It has been 8 days since her transplant. I am completely amazed at her fast recovery. Here is a little update:
1. Madison has only one chest tube left. (1 of 4) It is still draining quite a bit, so they plan on leaving it in for the next couple days.
2. She is doing much better in taking her meds. Some of her meds taste absolutely awful! Together with her nurses, we have been getting creative in trying to make this somewhat of a positive experience. There are times when her meds go smoothly and other times when they make her throw up. Today was a throw up day. At one point, I was covered from shoulders to ankles... nothing on her, just mom.
3. Madison WBC (white blood count) doubled yesterday and again today, indicating an infection. The infection was found in her PICC Line. She is now on antibiotics (this makes 17 total meds..). The PICC Line has been removed and the sad times begin. Because Maddie doesn't have a PICC Line, she had to get another IV, and she will have to be poked every morning for labs. (they take a lot of blood, too) She is such a hard poke and bruises so easily. Dang it! The IV team has been great in working with her. I always ask for the IV team! It's simply not worth anyone else trying.
4. Food: Due to heart failure, Madison hasn't ever been a great eater. (unless it has 0 calories... cucumbers, green beans, and pickles are her favorite) Now, her meds are causing her to not eat so well. I'm hoping that once we get home, things will change.
Madison's new heart continues to be perfect in every way. It is absolutely perfect for her. I love starring at it on the monitor as it is so comforting. She has been given a perfect organ. Thank you to our donor family. We love you.
(we might be going home on Thursday. I'm so excited!)
4 weeks ago