Sunday, December 13, 2009

Continuing to do well..

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!)

8 comments:

Al, Jenny, Avery and James said...

I too am continually shocked and awed at this whole chain if events. Anytime I think about it all the word 'miracle' always comes to mind.

Poor little Maddie with all of her meds :( That would be so tough for an adult to do, let alone a 1 year old. And poor you with the throw up shower! Hopefully it will get better. It sounds like Primary's has such a wonderful staff.

I am so excited for you and Mark and little Cooper. How hard this must be on all of you, but you are handling it with such finesse. I will be excited for when you guys can go home and have your own beds/cribs!!!

We will pray/keep our fingers crossed that her Picc line infection clears up quickly. Sweet little Maddie :)

Kimmie said...

the best christmas gift EVER!!!!
we are so HAPPY for your darling little family!

Mindi D said...

I hope you get to go home so soon, that is great!! I can't get Libbi to take her 3 meds, let alone 17 holy cow!! I don't know what i'd do. For now, i mix them in her bottle which is not the most ideal situation but it's all that works. In another 3 months there will be no more bottle, i'm a little scared. What an amazing little girl, such a fighter, and so is her family! Good job!

Amy said...

I am so sorry about the PICC line! I know what a life saver it is when it comes to blood draws! The scared of people walking in doesn't change, sadly. Daniel shuts right up! But we are totally honest with him, too when there is an owie or not. I don't know if it helps, but at least he can trust what we say! Good luck! She is still in my prayers!

The Greens said...

Love, Love, Love how well things are going. Thinking of you all so much. Send Mark and Cooper our love too.

Amber said...

I am so glad to hear that Madison continues to show such great improvements. I am so sad to hear about her infection and more pokes...poor girl!! We continue to keep your family in our thoughts and prayers. We will pray for Thursday! :)

Becca said...

Hi Michelle, I am so excited to see you guys possibly go home on Thursday! It's so good to see her do so well. We don't like it once the PICC line goes away, Ellie is a hard poke too and daily pokes stink. Hopefully things will continue to go well.

Mego said...

Hey-
I am so happy I got to see you guys today at Annette's. I loved having the opportunity to see Cooper again and to have a little time to hang out with him again. I can not wait to get to see Miss Madison. I have missed her so much. I'm so happy to hear how well Miss Maddie is recovering from her surgery and that she will be able to be home before Christmas. That will be so nice to be able to spend Christmas at home. I hope I get to see the tree before I go home for the holidays. I love you guys and give the kids a hug from me :)