All is Well

Sorry for the delay. I know I agreed to post something after Miles' appointment on Friday, but we've been really busy. So, now it's time to get down to business. As I mentioned, Miles finally had his echo on Friday. It was a long wait, and we were very anxious to have it done. We had kind of a hard morning because since Miles had to be fully sedated for the echo, he had to fast until he was sedated to avoid aspiration. Miles' appointment was at 1:00 pm. He could have no solids after 7:00 am and could have only clear liquids (more specifically only water, apple juice, Sprite or Pedialite-only in liquid form, no popsicles) until 11:00 am and nothing after that. It was especially difficult because Miles really will not drink any of the allowable liquids, even the Sprite. My dear son has a sophisticated palate, so the only soda he likes to drink is mommy Coke (Diet Coke) or, on a rare occasion, daddy Coke (regular Coke). Of course, he was particularly hungry Friday morning, and it is not the easiest thing to explain to a 2 year old that he has to fast until after his echo. Poor little Miles. We got to the hospital a little before noon to check in at cardiology. A nurse took a quick listen then we sat alone in an exam room for what seemed like forever until sedation finally came down. We answered a long list of questions to be sure that it would be safe for Miles to be sedated, and I guess we passed because they took us into the echo lab. Miles was such a big boy while they administered his iv and didn't cry at all. He's had lots of practice. They injected him with 3 different medications to sedate him, and he was quickly out. It's always a little sad (but almost funny at the same time) because when he's sedated, while he is "out", he doesn't fall asleep right away. He definitely goes pretty limp, and his eyes get really spacey, but they stay open. After the first couple of echos, I've learned that I really can't do anything or tell anything from the active echo to necessitate me staying in the room. It's basically sitting in a tight, dark quiet space for an hour. You just try to stay awake. This time Ben and I decided to run to the cafe and get lunch. In an effort to not be cruel to my little guy, we hadn't eaten anything either. Plus, we just really like the cafeteria at PCMC. It was a speedy rushed lunch, then back to the cramped echo room. We waited and chatted with some techs for about another 20 minutes, and then it was finished. We headed up to the recovery room, and it was a pretty lengthy wait until the sedation wore off. The last time Miles had a sedated echo, he was awake by the time that we got to the recovery room. Not this time. I think that it was probably a combination of the sedatives and a sleepy Miles, but we were there at least 2 hours before Miles really even stirred. We watched a few people come and go while we were there. One was a teenage boy that I guess had had some sort of accident while playing soccer and was recovering from nose surgery. Nothing of consequence right now, but I'll come back to it. Miles finally woke up, watched a little tv and drank some Sprite (reluctantly), so we could leave. We went back down to cardiology to touch base with Dr. Puchalski. Believe it or not, the echo was normal. He said that Miles heart, including his Mitral Valve, looked great. I mean, that wouldn't be in comparison to the average person's heart, but it looked great compared to what he had expected to see. Nothing looked like it had worsened since the surgery. Good news, right? Right. Then, why do I have such mixed feelings about the result? I'll tell you. I am so glad that we will not have to have another surgery in the immediate future. Miles won't have to have the limitations that come with valve problems, and we won't have to cancel or postpone any of our fun family plans that we have for this summer, and that is a big relief. What's the problem then? No answers. We still have the same respiratory problems that we had before and no foreseeable solution. Additionally, given Miles' disease, things are going to get worse at some point. It would be really great to catch heart failure at a regular appointment rather than have an emergency. I know some things to watch for. I've read a lot, but so many signs of heart failure are very normal things, things such as excessive sweating, night coughing and decreased appetite, things that I see in Miles on a regular basis. So, how do I know if it's normal, like I guess right now, or not? I'm just really afraid of missing something. It would be really great to just get it fixed, so I wouldn't have to worry about every little thing. Luckily, I have a great pediatrician who is just as anxious about any problems Miles has as I am, so he doesn't get too annoyed when I bring Miles in for a runny nose. Anyway, that's my problem, so I apologize if I'm not as super excited about the results as you would think I should be. I am happy. I really am. I'm going to return to the boy from the recovery room now. I think I mentioned before that I'm going to have nose surgery next month. No, I'm not getting a nose job. I'm just getting it fixed, so I can breathe like normal people. I scheduled the surgery for Ben's day off for obvious reasons, but I didn't really think any further until I saw that boy. He had a big white bandage over his nose. Seems pretty normal, but I hadn't thought much of it. Now, I can just see that as a target for Conan. Yikes! I have a super sensitive nose anyway. I can only imagine how bad a little hand or a big giant head to my packed nose will be. My surgery is on Friday, and unfortunately, Ben works for the four days following the surgery. Anyone want to very cute little boys for the weekend? I'll have to get this all figured out.