Tuesday, January 26, 2010

Cardiology Appointments 9 and 10..

Just wanted to give a quick little update. Madison continues to do absolutely fabulous! (I keep my fingers and toes crossed at all times..) My heart is definitely full with gratitude. As of appointment #9, we have graduated to once a week appointments. Madison's medications are still the same, little fluctuations have occurred, but still 13 meds a day.

Appointment #9 was a lot of fun! Hillary, it was so nice to bump into you. I'm so glad that Daxton and Madison shared their appointment. It was funny to hear the reaction from the techs and Dr. Everitt when they heard we were sitting in the same exam room. We should plan more "play dates" like that one. Anyone else want to join?

I was wondering if any of the heart moms would like to meet for lunch? I love the support that we provide for each other and it would be nice to relax and chat. Because our kiddos are sensitive to germs and such, maybe we could meet on a Saturday when the dads might be available to babysit for a little bit. Let me know.

On a more serious note.. through blogging, we have had the opportunity to meet some amazing, strong families. There is one particular family that could use your help. Would each of you please keep Mason and his family in your thoughts and prayers? He is only a couple months older than Madison. He is a heart kiddo who has become my Heart Hero. He is such a tough little guy. His family is in the midst of having to make some tough decisions and could use some "behind the scenes" help. You are welcome to click on his name (Miracle Mason) and read more about this cute little boy. We love you Mason and your mamma is amazing!

Monday, January 11, 2010

Cardiology Appointments 6, 7, AND 8

Finally an update...

Madison continues to do well and puts us in awe everyday. Her accomplishments amaze me! She amazes me!

In regards to her Cardiology appointments, visit #6 didn't go so well. BUT, luckily visit #7 and #8 made up for it. During Madison's visit #6, she lost some weight. Sitting very happily on the scale, Miss Madison weighed in at 17 lbs. 4 oz. Seeing her numbers pop up on the scale, I immediately gasp out loud. The tech said, "what? Is that good, or bad?" I simply picked Maddie up from the scale and asked if we could weigh her again. I was so bummed. I didn't realize just how excited and relieved I had become over her finally reaching 18 lbs. Had she really lost a whole pound in two days? Yes. Not only had she lost a pound, but her blood pressure was high, and Dr. Everitt wasn't loving the sight of fluid around her heart.

The fluid around her heart caught me off guard as well. I assumed the fluid was gone, or at least something that we didn't need to worry about. ggrrr! But, Dr. Everitt explained that she has always had a little bit a fluid lingering around her heart. She was hoping that it would be gone by now, but it's not. She's just going to watch it and treat it as we go. And she would like us to meet with the dietician at our next visit. Dr. Everitt also increased her Enalapril (blood pressure med.) and her lasix (used to eliminate water in the body).

I continued to be an emotional mess for the entire day. I was bummed, worried, and wondering why I was still playing the "Heart Failure Game.." Madison has a brand new, perfect heart. I didn't understand.

Appointments # 7 and #8 helped me to understand that although Madison does have a new heart and it is perfect; she still has a heart condition. Just a different kind of heart condition. She will always see a cardiologist and she will always be on a lot of medication (I knew that), but for other reasons than treatment of heart failure. Dr. Everitt explained that at this time, Maddie is very dependent on her medication. She probably outgrew her Enalapril dosage, which caused her weight loss and blood pressure increase.

So.. once again, I'm happy to announce that at appointment #7, Madison weighed 18 lbs. 3 oz. And at appointment #8, she weighed 18 lbs. 6 oz. We met with the dietician and she is not worried about Madison at all. She did encourage us to continue adding extra fat to her food until she becomes very chunky. And I feel much better. As for the fluid, it's still there. It hasn't changed, so we are just watching it.

Thanks for your thoughts and prayers. We (I) appreciate them so much.


Sunday, January 3, 2010

Cardiology Appointment #5

I am happy to announce to the world that Miss Madison is finally 18 POUNDS! Holy Cow, she made it! Our little girl has been 17 lbs. since JUNE. Now we will always remember.. 18 lbs. at 18 months old. Since receiving her new heart, Maddie is eating great. And has an appetite.. imagine that. She had gained 6 oz. in 2 days resulting in 18 lbs. 1oz. at the time of her appointment.

K- No laughing at the pictures below.. May I remind you that I'm a Social Worker, not a Photographer. (ha ha) I had brought our actual camera, in hopes that Maddie would be 18 lbs. during this visit and I could take picutes of her on the scale, BUT forgot the camera in the car. So, I relied on my trusty camera phone and couldn't seem to get the perfect picture that I was after. But here ya go.. Miss Madison, 18 lbs.
The rest of Maddie's appointment went perfect.

I've had a couple people ask how Madison is doing in taking her medication and she is doing really well. Thanks for asking. She takes them a lot better for Mark than for me. I don't know why. She hasn't thrown up any of her meds (or anything) since coming home. She still takes a lot of medication - 13 to be exact. We switched her meds from Primary Children's to our pharmacist in Provo. I love our pharmacist! I've decided that when you take a lot of meds, you need to love your pharmacist. (ha ha) This was a great choice on our part! They have been so accommodating and they truely care about Maddie. They always ask about her. I love that safe, secure feeling. I felt as though Primary Children's pharmacy was too busy. (I don't know..) I'm laughing right now because we also ordered 200 syringes. Yep, 200. I'll let you know when we order more. :)

6:30am: On our way to Madison's Cardiology appointment. I always try to dress Maddie really cute since she doesn't go anywhere else..

Love, Mommy and Maddie
(Madison's dad forgot to take pictures of her gold shoes. That's ok. We'll remind him next time.)