Heart of gold

This entry is ridiculously long, so grab yourself a drink and get rid of kids/husbands/annoying pets/ siblings for the next 20 minutes or so.

Yesterday was the Big Day at the Hospital. The night before, I slept as little in one might as I ever have - I was so anxious, every time I closed my eyes I saw Charlie getting his echo and Dr. D giving us that 'Oh no' look. I got 3 hours of sleep, maybe. As it turns out, adrenaline is a wonderful thing, I was so...wired isn't the right word because I wasn't hyper...maybe 'aware' is a better discriptor. I was just very there for each part of the day yesterday. The lack of sleep didn't hit me until dinnertime, at which point I started crying and had to be, literally sent to bed by my husband.

So, we arrived early for our appointment - living outside the city means either leaving early and getting there early, or leaving on time and getting there late. We always leave early. We had some time to kill, so we just sat with Charlie, had a tea, Matt did a crossword and I played games on the iPad and we alternated holding and talking to the sweet boy. We checked into Sedation at 7:30, and Charlie was knocked out by 8am.As a side note: it is so funny to watch a baby fall asleep under sedation. Charlie fought to keep his eyes open, finally closed them, but continued kicking his legs for another few minutes. "Hey guys! I'm still in here! I don't know why I am sooooo sleepy...but...I'll...see...you..." OUT. Hilarious.

The echo was uneventful, and they managed to do the ECG before Charlie woke up. Once he was up, they had to make sure he could keep food down, so we had some formula and hung out, and once the nurses were sure Charlie was not going to hurl, they sent us to the waiting room in the clinic (same floor, our regular waiting room area). We waits forever to see Dr. D, but we met some cool people during the wait - I met a woman who had a son with a valve issue, and he was one of NINE children. She had NINE babies. NINE. We also saw new friends of ours who we met in the waiting room last appointment, who have two children with DCM, just like Charlie. Finally, they took us, two hours after Charlie woke up.

Kristen spoke to us first, answered a few general questions we had, and we talked about the option of getting a g-tube. She then went to get Dr. D. Matt and I weren't totally sure about a g-tube for Charlie. A G-tube is like his NG tube in his nose - NG stands for NasoGastric, and a G-tube is just the gastric part because it just comes right out of your stomach - no Nose required. Obviously, though, this requires a small surgery. Dr. D was totally sold on it being a good idea for Charlie, so we've been put on a list to meet with the G-tube team and discuss it with them, and set a date. I think it's kind of a done deal, but there's a waiting list and a bit more paperwork to do first.

Anyways, the crux of the day: the results of the echo. The last 2 echos were basically just to check for clots - there was really no chance that Charlie's heart would be better because he hadn't been on the meds long enough yet. Matt and I got the impression, though, that this one was different. They wanted clear pictures (hence the sedation) and they wanted a good look inside. Matt and I know nothing about Radiology or reading ECGs, but both of us thought separately that Charlie's left ventricle looked smaller, and that his entire heart had a more regular, rhythmic pulse to it.

Dr. D. told us that "Charlie's heart shows some improvement in function." She and Kristen then smiled and look positively hopeful. They both look relieved, to be honest, and said that there should be more progress at his next echo in March. His heart is actually doing well enough that they debates taking him off his daily injections of a blood thinner, but ultimately Dr. D decided it was better to keep him on it until March, just to be safe. This was the drug that they told us in August was temporary, but to expect him to be on it until he was at least 2. Charlie is clearly exceeding their expectations.

After the Good News, we spoke to the dietician, had lunch,and came home with a weirdly one-minute-hyper-the-next-asleep psycho boy.

I don't know how to deal with this news, so I am trying not to deal with it at all. I don't know if I should be elated (I am), scared (I am), anxious about the next echo (I am)...I don't want to be too hopeful and then get crushed at the next echo, but I also don't want to treat this like it's nothing. He has gotten a teeny bit better. He is responding to the medications. I am hopeful, but I am also not thinking about it much.

Oh, and the not eating thing? Dr. D says its behavioral. "Keep on keeping on" was the message, and apparently once he has his g-tube it will be better, and easier. More for the adventure. I said to Matt tonight that I have just gotten used to this new normal and another one is around the corner.

Sorry this entry was long - enjoy the song. Thanks for your good thought, prayers and wishes. All the positive energy that surrounds Charlie is helping him, and us, through this.

Heart of gold - Neil Young

I want to live,
I want to give
I've been a miner
For a heart of gold.
It's these expressions
I never give
That keep me searching
For a heart of gold
And I'm getting old.
Keeps me searching
For a heart of gold
And I'm getting old.

I've been to Hollywood
I've been to Redwood
I crossed the ocean
For a heart of gold
I've been in my mind,
It's such a fine line
That keeps me searching
For a heart of gold
And I'm getting old.
Keeps me searching
For a heart of gold
And I'm getting old.

Keep me searching
For a heart of gold
You keep me searching
For a heart of gold
And I'm getting old.
I've been a miner
For a heart of gold.