Back Home (and in one piece!)

Update April 2, 2022

Well, we made it home! Yay!

Since we last talked, Cam was extubated successfully, and proceeded to recover like a rock star in the days following. We got home Sunday night and had a week or so to acclimate to the real world again. Though most of this monotonous hospital stay was spent by Cam laying there, oblivious to Shrek on constant replay, me trying to find a working coffee machine and remembering to wear a bra to rounds, and Kris trading me out every other day so I could see my teenagers and pretend to be human, we did have a few noteworthy adventures:

• Cam and I got to ride in TWO ambulances in one day! Since we had the blinky lights on for the first leg of the trip, they had to stop at the closest hospital (Parker Adventist), where we unloaded, they placed an IV catheter, got some labs and chest x rays. But we didn’t even have results back before the SECOND ambulance came from Children’s Hospital, where of course Cam was destined to go from the beginning. I got to ride in front, which was nice because I could hear that Cam was okay, but I also took the opportunity to question the heck out of the drivers. Both were very nice dudes and they told me to tell you, when you hear the sirens, GO TO THE RIGHT.
• After the first night, when I actually spent more time crying than sleeping, and they decided to intubate Cameron, I thought I could help the nurse re-position him. Bad idea. I actually managed to pull out Cam’s IV catheter (the one Parker Adventist placed in his right ankle). A little pop, a spurt of blood and BOY was I embarrassed! The PICU attending doctor was very irritated but kind with me. In my defense, it was dark in there and I couldn’t find my glasses. Also, I’m an idiot.
• I found that I rather enjoy zombies, especially if they are in Korea. Have you seen “All of Us are Dead?” It’s awesome. (FYI, the hospital is the best place to binge watch shows the rest of your family has no interest in).
• After the first couple days of peaceful intubation, and everyone feeling like they were getting a good handle on the pneumonia half of his problem, Cam starting burning through his sedatives. He’d wake up and buck around…they’d turn him up…his heart rate would drop…they’d turn him down…he’d buck around…you get the idea. Finally, it was extubation time. They called in anesthesia and everyone was quite nervous; if they pulled the tube and his upper airway collapsed again, he would need to be re-intubated. And if that happened, he would probably need a tracheostomy (a procedure we have been tippy toeing around for a year, which we would prefer to avoid.). And if THAT happened, we wouldn’t be leaving the hospital for a couple months. Well, they pulled it! He struggled a little. We watched. He struggled a little bit more. The doctors looked back and forth at each other, but finally decided to give him some time. He was relatively safe; oxygen was getting in, blood gas tests were okay. After about an hour, he started settling down (I think he was pissed off, but didn’t know how to show it) and we were good! Phew! I estimate we were about 20 minutes from becoming semi-permanent residents of Children’s Hospital Colorado.
• After being intubated for 5 days, Cam’s already stubby neck scrunched up tight, he emerged from his slumber with a wicked rash on his neck. Looked like a yeasty red sunburn doused in acid. The excellent PICU staff got wound care on the case and it was nearly healed by the time we went home.
• Cam didn’t poop for about 6 days, which I understand is not ideal. His nurses gave him all the miralax, senna and suppositories for days, but it didn’t work until one glorious night when he let it all burst forth. That poor nurse was changing diapers, pads, bedding and everything within three feet of Cam’s rear end every half hour all night. I helped her as much as I could, because it rather resembled some of the post-anesthesia huskies I’ve seen at the office and I’m a poop expert. 
• At one point after extubation, I was helping the respiratory therapists with Cam’s treatments when I saw something little and white on the roof of his mouth. I looked closer and it was a tooth! Growing through his palate! I touched it, and yep, it was hard, and yep, it didn’t move. Then Cam bit my finger. I let the nurse know what I saw, who let the doctors know. I spent a couple days freaking out that my poor kid was going to have reconstructive oral surgery on top of everything else. I even sent the dental team photos of it until they finally came by. The dental team was able to use their little instruments to look in there without losing digits as Cam thrashed around. They probed it. It came out! It was his crown! I was SO embarrassed and SO relieved.  I’m pretty sure this is what actually happened: when Cam was intubated, they bonked his teeth, his crown came off and lodged in his palate (for a week!). That’s still not awesome (what if he would have aspirated it!?!) but much better than his adult teeth growing in weird places. The take-home lesson for me was to make sure your parental concerns are addressed, even if you think they are stupid, because although they may be stupid, they may ALSO prevent some other equally stupid thing from happening. Or something like that. 
• Oh, the pharmacies. My heart goes out to them all. They are such hurtin’ units right now. Even with Cam’s regular medication we have been having trouble. This time, to go home, he had to have some special order medications, with special order nebulizer cups, special ordered from Florida or the insurance wouldn’t cover it. Let’s just say, it’s been a week and we have ALMOST all the stuff we need, and I was on the phone and/or stopped by at least seven different pharmacies. And the poor resident trying to arrange all this…it’s enough to make you drop out of medical school, I’m sure.

So now we are home, keeping Cam out of school so he can recover (he can almost sit up on his own again!) and to give him rather intense breathing treatments every four hours (okay, he did venture out for Brady’s performance as the Wicked Witch of the West and for Carson’s soccer game tomorrow…he’s still gotta live, right?). And he lost another tooth! Doesn’t he look dashing?

Next Friday, we are taking him to Boston Children’s Hospital for a second opinion from all the departments we could reach. I’m quite sure it’ll be an interesting week and I’ll have some stories to tell you, if I’m not too tired and don’t lose my charging cord (and my sanity) in Boston. Thanks for reading and wish Cammy luck!