At the beginning, before the struggle. |
Today was full of fun plans. Andrew, Aaron and I started the day bright and early, or at least early. We left the house about 5:15 to help out at the Unified Firefighters Outreach Half Marathon and 5K. They contribute a lot to Angel Hands, a group that helps families like ours with activities. The plan was to hang out there and work during the morning hours and then head to a birthday party for another little boy with T18 who turned one yesterday. (I know! Pretty amazing!!)
Except as I said, that's not how it worked. Aaron has been doing really, really well all week, but as we got to the site, he coughed a little bit and struggled some. It continued so about 6:30 I put him back on the vent (he'd been using his speaking valve). And he just nosedived. It was like he wasn't even on any oxygen at all. I double and tripled checked the lines, the tank, everything. It was all the way it was supposed to be. So we gave albuterol (all-better-all) but again, pretty much no response. So we bagged him and changed out the trach, hoping that would solve everything.
It helped, some. But not much. He was actually doing much better on the speaking valve than on the vent, probably because he's on 100% oxygen on the valve where it's diluted quite a bit through the vent. He kinda hung out okay, higher on his oxygen than I liked, but still "okay." Gave albuterol again a little while later, in hopes of bringing him up more. Again, it should have done a lot, but there was no difference.
About 8:30 he got kinda sad and his heart rate went up. I figured so much for trying to stick around. But because of his higher heart rate I was worried that maybe a fever was setting in. I have a thermometer, but it was buried in a bag. And remember, we're at a "Unified Firefighters" event. Paramedics and EMTs everywhere, plus a really nice first aid station set up right by us. So I asked them to quickly check his temp. It was good, so I figured we'd just head for home.
But I looked at him once more as I buckled him in and decided that maybe that wasn't the best idea, so we headed in. He really wasn't a happy camper. My little guy who always smiles cried almost all the way, and his heart rate continued to climb. Andrew did amazing bagging him.
Now, you're probably wondering with all the medical people there why I didn't ask for help. Yeah, that would be a really good question. The thing is, I figured we could handle things. Except I forgot something. I didn't listen to his lungs. I just went on what I was seeing. Big mistake.
Resting peacefully, once he can breathe again. |
The room was full as you can imagine, but it needed to be. When the RT (and then the nurse and doctors) listened to his lungs, the breath sounds in his lower left lung were significantly diminished. And that was the only place they could hear anything!! His breath sounds were ABSENT everywhere else.
By this time, my poor child was guppy breathing (yeah, it looks just like it sounds), retracting like crazy, and mottled from head to toe. The RT bagged with a therapy bag then put him on a vent with higher settings and 15 liters of oxygen. They pulled a blood gas and it was as ugly as he was. His pH was 7.24 (7.35-7.45 is normal, cells quit functioning at 6.8) and his CO2 was 72 (normal is about 35-45).
Fortunately for Aaron, the increased vent settings worked really well and really fast. By the time x-ray got there, he was opened up enough that it looked like a normal x-ray for him.
After his little nap. |
So why did his lungs collapse like that? That's the big question. No one seems to know. All his other labs looked really good, including viral panels. If it had been an allergic reaction to something, or an asthma attack the albuterol should have made a difference, it didn't. There is nothing to go on. So he's staying overnight to make sure it doesn't happen again. He is creeping up on his oxygen needs right now, but we'll see what happens when (if?) he goes to sleep tonight.
But the lesson has been learned. You know the saying "look before you leap." From now on (I hope) I'll "listen before I leave." Had I done that, I would have realized how much trouble he was in. There certainly were enough emergency personnel there to help. And they would have put him on the helicopter they were bringing in for show. It was that bad. I'm just so grateful that my mistake didn't cost us a whole lot more than a day or two in the hospital. And I'm grateful I listened to that little voice inside me that said I wasn't going to be able to handle this one at home.
“Just breathing can be such a luxury sometimes.”
Walter Kirn
Intense. Strong feelings as I read this. Praying for his continued health and for strength for you all.
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