Wednesday, June 29, 2011

Back Again

This is going to be a very short post, because I'm exhausted and my little man is crying for me to lay down with him. We came in yesterday for Holden's appointment with the transplant team, and they decided to keep him for a few days. None of his issues are huge deals, and he's not facing anything he can't handle, but it still just sucks to be back here. He has a few different things going on, and hopefully they can all be dealt with quickly so we can get our boy back home!

His kidney numbers (BUN) were really high, probably due to dehydration. They wanted to see what would happen with the number if we started him on IV fluids, and thankfully it's working so far. (Slowly, but the number is coming down.)

Some of his electrolytes were low as well, so they wanted to keep an eye on those numbers. It's not usually a big deal for a normal person to have low potassium, but for a heart baby it can be a bigger deal. If we can get those numbers stabilized, that will be one less thing to worry about.

When they measured his BNP (the number used to measure the severity of his heart failure), it came back showing a whopping 24,000. That's up from 5,000 last month, so it's a pretty big jump. It's down to 17,000 today, but that's still really high. I think it's confused everyone, since the echo didn't show any major changes in function. With a jump that high, we would expect to see the effects on the echo, but Holden's never played by the rules.

And since he needed one more thing on his plate today, his cultures came back positive for c-diff. It's a bacterial infection in the gut, and people who are on frequent antibiotics are more susceptible to catching it. It's treatable, but it's just another speedbump.

I've known something has been off with Holden for a while now, since he hasn't been acting like himself for at least a couple of weeks. His behaivor has probably been a combination of all of the above factors. I hate that he's back as a guest of CMC, but I'm glad we're getting to the bottom of everything so that he can finally begin to feel better. We'll be here until his labs come back looking a little more normal, and hopefully that will be sooner rather than later! Holden always manages to surprise us, so maybe it will be a pleasant surprise this time around.

I'll update more tomorrow after we've all gotten some sleep, but I've outlined the basics for those who were wondering. Thank you all so much for your kind words... I can't tell you how much they mean to us. Please don't forget to add Keegan and his family to your prayers as well... They are still struggling, and I know they can use the lift! We truly appreciate each one of you who continue to follow Holden's story, and we are so very grateful for your support and prayers.

Tuesday, June 14, 2011

Dog Days of Summer

Once again, I'll have to start off with my heartfelt apologies for not updating this blog more regularly. I know that many of you check in daily, and I'm sorry that I haven't kept up for you. In my defense, we have been crazy busy around here. The girls have been here with us since school let out, and we have a house full of people. I've been trying to run the madhouse with some illusion of order, but that's no easy task. I also have a ton of pictures to upload, and I promise I will try and get to them soon. I know my definition of soon can be sketchy, but I will do my best!

All in all, things have been going well. Holden is still up and down, and he still has bad days that break my heart. But he's turning into a happy little boy, and I love that for him. He had a cardiology checkup at the end of May, and we'll go back this month for a more in-depth workup. We don't have much to report from the appointments. His BNP is still going up, but that's to be expected. Our biggest concern at the moment is his weight. Instead of gaining, or at least maintaining, he's losing weight. He's also gotten a little bit taller, so he looks like skin and bones. Unfortunately, there isn't much we can do about that. His vomiting is pretty cyclical, so it will get better for a little while and then get worse again. Right now, he's throwing up at least a few times each night, but we're hoping and praying that gets better again very soon. He needs to keep down every calorie he can.

We've managed to do a few fun summer things, in between all of the nursing and caretaking. I hate that we can't go and do more, but we still have to limit Holden's exposure to crowds. I'm just happy to have all three of my kids here this summer, and watching them bond again is enough to bring joy to my heart. Lord knows we all needed this kind of time together!

We are so thankful for your continued thoughts and prayers. They mean the world to us, and we truly appreciate all of you. If you happen to be saying a prayer for Holden, please include a few words for another little boy named Keegan. He had his heart transplant when he was a newborn, and he's three and a half now. The past six months, he has been in and out of the hospital with various complications. His family has been through so much, and I know they could use your prayers and support as well.

These past couple of months have almost felt stolen. I don't know how to explain it, but I know that we're not going to be able to stay this way, and I know we still have some major hurdles to jump. It makes me feel like we should squeeze everything in while we can. When I think about other kids like Keegan, it makes me even more determined to enjoy every single second of these stolen days of summer.

We are still waiting for the other shoe to drop. Still waiting for the call, still stuck in a holding pattern. But today, I am grateful. To be at home. To be celebrating the long hot days with family surrounding us. To be given the chance to watch my kids rediscover each other. I am grateful for the chance to let Holden try and grab his own little piece of normal. After all, doesn't he deserve to be a normal little boy for even a short time? I think so. I think every child deserves that much.