I have so much to write about what exactly happened these last few weeks to our family, but it's really hard to put in words. When we came home Saturday, I felt overwhelmed with gratitude that we could actually come home. That Andrew lived through that experience. If things kept going the way they were for a while there then I would probably be planning his funeral right now. I'm just amazed that he finally made the turnaround Monday before last and started breathing on his own, more slowly, and more deeply. A lot of people have asked me why we didn't stay in the ICS too long (it seems like we just went from PICU to home, but that actually does happen). They were really conservative downstairs in weaning him off the oxygen very slowly, because sometimes kids will regress when they get let off too quickly. So, we did stay down there a little after so they could monitor us (we could have probably gone to a regular cannula upstairs a day or two earlier). Also, Andrew really did just recover very quickly.
A couple of nights ago, Andrew went to the ER (see last post), and I just couldn't handle the stress anymore, so Stew took him. I'm still trying to get out of emergency mode and it's been hard to process the emotions of the last few weeks. From losing a very good friend to coming a little too close with Andrew, we're just trying to ease our way back into normal life. Andrew's doing a little better every day--you can tell he's not as traumatized by people anymore--and he's eating a little bit now.
Here's the last L-aspar shot of chemo that Andrew had. Little did we know we were going to give him Neupogen shots every day for the next number of days. I think a cold pack helped him not feel it as much, and I really wish I'd done it sooner.
Andrew really started feeling lousy a few Saturdays ago (the day that our cancer friend, Tanner, passed away). I don't know if Andrew unknowingly mourns his friends, but for some reason, he always gets very sick when one of them passes away.
The first step to try to up his oxygen saturation (measured by a pulse-oximeter on his toe) was a blow-by. We soon realized it wasn't working well enough went we put it at 10 liters/minute right up to his face and he was still de-saturating.
The next step was the very uncomfortable nasal cannula that has never worked in the past because he always ripped it off. He still did, but eventually lost enough energy that he didn't fight it anymore. His breathing always got worse with his fever, and Tylenol every four hours only made a dent.
The next step was a non-rebreather, and then this fancy bit of equipment that the respiratory therapist had to install in our room. It didn't work well enough by this point (we went into the PICU later that night).
The next step (and thankfully, the final step) was a high-flow nasal cannula (just a lot thicker than a nasal cannula) going at 8 liters/minute straight into his nose. I can't imagine how uncomfortable this must have been for him. The point of this contraption is to force air into his lungs because he wasn't breathing deeply enough. The analogy I thought made the most sense was blowing up a small balloon (it doesn't take a lot of effort) versus a bigger one. The cannula just makes blowing up the big balloon (an infected lung) easier. If he wasn't stabilizing, the next step would have been constant sedation and a C-PAP (just about no kid can tolerate that one awake). After that is intubation, and we just didn't want to even think about that one.
They eventually added an naso-jejunal feeding tube up his nose that they snaked all the way down past his stomach. It ended up in his duodenum until my finger caught on the side of his nose and accidentally pulled it out a few days later. Whoops. Along with his cannula and NJ tube, you can see the leads on his chest, the amazing nurses downstairs who figured out his meds with only a single-lumen PICC (coming off his elbow), and one of his skin biopsies on his thigh.
Eventually they weaned us off the oxygen and sent us back upstairs for monitoring. Since his ANC was high enough, I just put him in this thing and had him run around the halls for a couple of days. He was still sluggish and clumsy, but I think he enjoyed running into walls and nurses.
Ringing the bell. No more chemo!
We love the staff at Primary's! They are the best!
Andrew's first bath in 7 months!!! We were so happy to just be able to throw him in the bath and not bother with sponge baths any more.