We've had better days..

Hello to everyone from Primary Children's Hospital..

I've been trying to write this entry for a while now. I tell ya.. just being in the hospital is a full time job for moms (and dads). The doctors and nurses have kept me pretty busy. To be honest, I prefer that. Those who know me, know that I like to be incharge (no laughing..) It's nice to feel like I'm running the show over here.

(Maddie is sleeping right now, so I'm going to type fast)

Here's a little update as to why and how we ended up here. (and now that we're here, how we get out of here..) It really started with her routine cardiologist appointment on November 12. Just as any other visit, Maddie had an echo. Dr. Everitt informed us that her echo had worsened and her Tricuspid Valve was leaking more than her previous echo had shown. Dr. Everitt then continued her exam, took a deep breath, and said to come back in two weeks. At this point, there really isn't anything more they can do for Madison, unless she is admitted. This visit, she is was definitely sitting on the borderline of whether or not to admit her.

Although Madison continues to look so good (on the outside), I knew that what was happening inside her little body was going to catch up to her soon. Her heart is working so hard. Her echos are scary to watch. You don't have to be a cardiologist to see that her heart is heading for trouble. Madison still had not gained any weight (she has been 17lbs. since June.)

On Friday Madison randomly threw up. Naturally, one would think she was starting to get sick. But she wasn't showing any other sick symptoms. Mark and I both had a feeling that this wasn't a sick symptom, it was the next stage of heart failure symptoms. We've had this feeling since November 12. In a way, we knew it was coming. On Saturday, Madison threw up again; on two seperate occasions. At this point, Madison still is not showing any signs of being sick (cold or flu). By Sunday, Madison was beginning to look pale. Her activity level was still normal and following the throwing up moments, she was fine. There wasn't any reason to rush her to the ER or InstaCare. I knew she was ok, but something was definitely going on.

Monday morning we had a routine cardiologist appointment. (if she didn't have one scheduled, I would have called) We went and had labs first. Her *BNP level is still +4,000. Upon exam by Dr. Everitt, she noticed that Madison's liver was enlarged. This is a clear sign that her heart isn't pumping enough oxygen or nutrients to her organs. She immediately sent us for an unplanned / unscheduled echo. Her heart has worsened significatly AGAIN. Following the echo, we were escorted directly up to the PICU where a bed and team of doctors were waiting for us.

And here we are.. in our little suite. They have started Madison on Milrinone. Milrinone is a heart medication that can only be administered through IV. Doctors have described this drug as being an energy drink for her heart. This drug allows Madison's heart to relax, but pump stronger or smoother, and more efficiently. This will allow her heart some 'breathing time', so it can get stronger. That's where the energy drink comes in... her heart is getting a little boost.

Today's events included waiting and then finally getting a Picc Line. For those of you not familiar... 'waiting' is a typical hospital game played between patients, parents, and medical staff. I have become very good at waiting patiently. :)

Anyway... Madison was first scheduled to receive her Picc Line yesterday. The IV Team was busy and requested that she get one first thing in the morning. 8:00am was the plan until that was pushed back to 12:00pm and that was pushed to 1:30pm. I felt so bad for her; she had gone 12 hours without food or drink. She was receiving fluids through her IV, but she was very restless this morning.

Speaking of food and drink... Madison has tried to eat, but still isn't keeping much food down. She is throwing up 1-2 times per day.

Good news... Madison will be coming home with a Picc Line. This will hopefully minimize or eliminate hospital visits. The magical heart drug, Milrinone can be administered through her Picc Line. I'm not sure if this will be a permanent med, or given as needed per Dr. Everitt's instruction.

Upon discharge, Miss Madison is also coming home with an NG-Tube. This is a feeding tube inserted through her nose. She also has a new med... Lovenox. (Every heart mom's worst nightmare) Lovenox is a blood thinner and can only be administered through a shot in her thigh or bum. Is now a good time to remind the world that I have a degree in Social Work, not Nursing?!

K - Heart mom's (or whomever)... I could use some advice. Are there any Home Health Companies that anyone especially likes working with? Anything else I should know about?