Our little Monkey Man AKA Pluto AKA Maddox

So Maddox had his cardiology appointment yesterday. I have known it was coming for 6 months, but Wednesday night I just started feeling so anxious about it. I had a hard time sleeping. Then as I was driving and caught sight of the Riverton Hospital (we get to go there for appointments, so much closer and easier and quieter than going to Primary's) my heart started racing. I don't know why I was having such a hard time, I knew what was coming. So we check in and they sent us downstairs to get a chest xray. They always have me step back where the computer is, and I like seeing the xray. It's crazy to look at it and see the wires twisted around his sternum. Like bailing wire. For the first time I looked past even that though, and saw the outline of his heart. Crazy. Beautiful. Maddox hated sitting for that, but they gave him some Queen (Lightning McQueen) stickers and he was a little happier. I didn't bother putting his shirt back on for the walk back upstairs, we'd have to take it off again anyways and he'd rather have it off. As we were riding in the elevator, he was putting queen stickers on his chest, just so happened to be right along his scar. I thought it was pretty funny.

We passed a few people and I wondered what they thought when they saw his scars. What does anyone think? It's so much a part of who Maddox is, that I don't even notice it all of the time. Sometimes I see it though and I'm just hit with so many emotions.

Maddox also did not like the stickers they put on for the EKG, but once I told him he was a robot and got him to look at the computer screen, he settled down. When the nurse went to leave with the machine he waved and said "Bye bye robot".  Dr. G (the fellow that works with Dr. Pinto, whose last name I can't seem to get my brain to remember...) came and checked Maddox out and asked all of the usual questions. Then he started talking about the Fontan surgery and giving me a timeline. After we talked about that for a bit, we both agreed that early June will be best. Then Dr. Pinto came in and agreed and we have a plan. So Maddox will have the pre-surgery cath and echo early to mid May, with the Fontan following within 2 weeks.

I already knew this, it's what we've been planning, and what I've been telling people, but for some reason having it confirmed by the Dr.'s just makes it so much more real. I know he needs this surgery, and I know it's time, but it's really hard to think about sending him back into the OR. To think about him being on bypass, and intubated, and coming out of surgery covered in chest tubes and wires. I am dreading the first time he wakes up and wants me to hold him and not being able too. I'm dreading not being able to give him food or drink when he asks. I'm dreading the pain he will be in, and the understanding he will not have. But...I absolutely know that when the time comes I will have peace and comfort. I know that God will be with all of us.

After we were done talking, Maddox had a question for Dr. Pinto. He asked her if he could "Eat noodles with Mickey." We have talked about possibly taking a family trip before the surgery, and I wanted to be sure it would be ok to travel and everything. So she told him yes and I think he thought he could go see Mickey right then. ooops.

Just before we left, another Dr. came in to see us. We've met him before, he gathers participants for research studies. We are enrolled in some studies, but I couldn't tell you how many or which ones. Anytime they've asked, I've said yes. They've taken blood a couple of times, and I think for the most part they just track his progress on different things. I know how important these studies are, if it weren't for others willing to participate we wouldn't have Maddox today. So hopefully whatever they find out can help kids in the future. Anyways, Dr. AK (Maddox's surgeon) is doing a study on the growth of these kids. So we said yes, and went down to get blood drawn. Maddox was not happy about that, but he got to pick another treat. We left the hospital with 2 bouncy balls, a sticky hand, a sheet of Queen stickers, and a cute wooden truck. It was funny because Dr. Pinto said "We don't have any good toys here today! But when he comes back for the next appointment he'll get a blanket and some better toys."

Then we got to meet a dear friend for lunch. We  met Val at PCMC when Maddox was there the first time, and her sweet princess was in the room next to us in the CICU. It was so good to catch up and see our little guys playing together! Her son is about 9 months older than Maddox, so he was just a baby hanging out at the hospital while her daughter was there in the room next to us. I think these boys were meant to be friends. Given the chance, they will get into lots of trouble together.

I also had to run up to the UofU so while I was there, I dropped off some cookies to the CICU, Dr. AK, and a fellow heart mom. Walking through those halls gives me chills. It's like re-living your past. I walked to the CICU and entered the doors and so many memories came rushing back. Some make me smile, some bring tears to my eyes, some break my heart over and over. When I went to Dr. Ak's office, I turned too soon and ended up in the surgery waiting room. I looked around at parents waiting for updates and wanted to hug them and tell them it would be ok. I passed a couple in the hall who were headed back to the post-op rooms with a nurse who had led me there before. I passed the doors to the OR and thought of the times Maddox passed through those very doors. And I said a little prayer in my heart for the children who were in there at that moment. When we went up to 'the floor' Maddox got out to see Spider man (there's a statue in the lobby) and then walking through the surgical unit, he loved seeing the whales and dolphins and turtles and fish painted on the walls and floors. He was so happy, walking and jumping and telling me the names. I smiled and encouraged him, but what I was really thinking about was how the next time we were there he'd be wheeled through these halls in a bed, hooked up to machines.

No wonder I woke up feeling down today. The appointment was really a positive one. And things are really going just as good as we could hope for. But I just have so many things running through my head! I need to quit thinking about it so much, enjoy today, and rely on my Savior to make up the rest. We truly are blessed. I am lucky to be Maddox's mom. I am grateful for all of the new friends I've made because of our heart journey.