Thursday, July 16, 2015

The Problem with Neutrophils (a.k.a. ALL THE UPDATES)

I apologize for the lack of updates, things have been really busy for us so this post might be kind of sizable while we get everyone caught up!

Outside the Bubble
Since our last post, we've been able to venture out into the real world with Max and behave like a normal family! Well, a normal family with an overabundance of Clorox wipes and hand sanitizer, but we got to leave the house so we're calling it a win. Actually, the first day we got to go out was on Mother's Day which was an awesome present. We've been able to go out a few times and meet up with friends who finally got to meet the infamous Mighty Max and it feels awesome to get to see some friends again.

Back in the Bubble
As was to be expected, when we started going out, Max would get sick a few days later nearly every time. We were as careful as we could be: we cleaned our hands a lot, we wiped off whatever table we sat at with Clorox wipes in case Max touched it, and our friends (very wonderfully and respectfully) gave Max a little space. However, we can't control everything and you can't expect to go from no exposure to lots of exposure without Max picking up something. Since he's had to be under house arrest for so long, he doesn't have the antibodies everybody else does. So we've just had to deal with each bug as it comes and when he's better, we do our best to resume normal life (well, normal for us).



Max Likes to Move It, Move It
I can't remember if I talked about this in the last post but Max is definitely mobile now. He's not crawling, but it's not because he can't--he'll push up into four point (on hands and knees) but then realize it's way easier to just roll where he wants to go. And he is fast. He's keeping us on our toes and it's fun to see him getting more adventurous. We're hoping to start physical therapy again soon so we can work with Max and help support him as he gets bigger.

So, Teething Blisters are a Thing
About a month ago, Max got super sick. He was throwing up a lot and had a blister on his gums, which concerned us that we were looking at another issue like what we had back in November with the atypical histiocytic granulomas (in regular people language, the angry canker sore in his throat that hospitalized him in in the fall).  We took him into the pediatrician and it turns out that while Max had a bug, he was also teething and she suspected that the blister on his gums wasn't another granuloma but said it was an eruption blister. Our pediatrician said those can be common and it's basically a blister over a new tooth coming in which equals a lot of pain for poor Max. We monitored in closely and sure enough, within a couple days the blister went down and in its place was one of Max's front teeth poking through his gums. This poor kid has been through enough--why does he also have to have a wicked awful time teething?

Sigh.

Shots, Shots, Shots, Shots
A couple weeks ago, Max was finally able to get his next round of shots--yay! He got a whole bunch including DTaP, polio, and Hep B (plus a couple others). We're so excited to be able to start moving forward to get him caught up on the shots he can have. The downside is that Max had a rough couple days after the shots. The injection sites seemed to be sore and Max doesn't have a whole lot of fat on his skinny legs to help cushion the shot. He had a rough couple days so we just gave him Tylenol around the clock and kept in contact with the transplant team and then he came out on the third day back to his happy, smiley self.

The Problem with Neutrophils
Our biggest issue at the moment is with Max's neutrophils. For those of you who don't spend all their time reading medical literature, neutrophils are a type of white blood cell that make up about 40-75% of all the white blood cells and are an essential part of the immune system. Max is critically neutropenic, which means his neutrophil levels are extremely low. To give you an idea of what this means, Max's last level was 0.4. If he had cancer and need chemotherapy, the cutoff to receive that treatment is 0.5 which means Max is very susceptible to bacterial infections at the moment. We got another lab draw this last Monday so hopefully we'll hear some results tomorrow to see where his level is currently at.

So how do we fix this? There are a couple options in terms of medication but what it might come to is me having to give him a daily shot at home. I'm not excited by this idea but it can't be worse than when Max first came home from the hospital with a double lumen RA line straight into his heart that I had to flush out every day ("If you get an air bubble in there, he'll die. No pressure, new mom!") Hopefully we can manage this with medication but if this continues to be a problem, worst case scenario is that Max could end up needing a bone marrow transplant. But that's not even being discussed at the moment--we've only begun to start looking at fixing this neutropenia. All the same, it's something Jon and I would rather be aware of now instead of potentially being surprised by it later.

Ugh, can we not?

Overall, Max is doing well and aside from when he was really sick with that eruption blister, he's been slowly gaining weight. He loves dancing, playing with us, and anything involving Elmo (or "Eldo" as he's started calling him). He's just the best kid and we feel so lucky to have so many people love and support us.

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