by AJ’s bronch last Friday went well. Nothing new and exciting to report and the images looked good.
Unfortunately, his constipation was a concern. He has been vomiting multiple times a day and it could cause issues with his graft healing.
He went through multiple increases in his constipation meds – taking senna, miralax and colace together. He received an enema – and still didn’t produce a bowel movement. X-rays showed a “moderate amount of stool”, but thankfully no obstruction, so it was just a matter of time.
I was still uneasy about the strep I was battling so I stayed home while Amy stayed at the hospital and kept me updated. Hospital stays aren’t much fun, but hospital stays with a three year old who largely feels fine and needs to poop are a special kind of torture. She deserved a gold star for that alone.
Eventually, the cocktail worked, and on Sunday he was able to come “home” (and so was Amy).
Monday I was feeling better, but Monday and Tuesday were spent heading into King of Prussia to have labs drawn for his lovenox levels (med that prevents blood clots). He was also able to enjoy crashing a music therapy session that was going on in the lobby. His lovenox levels ultimately were fine.
Tuesday afternoon, I got sick with a GI bug and was completely incapacitated. At the time, Amy was scheduled to return home on Wednesday morning. I crashed to bed, Amy took care of AJ, and Aaron worked on getting Amy’s stay extended.
Amy took over cares for AJ – and not just periodic suctioning and pushing some food in here and there, but she got inducted by fire into all of the details – every med, every shot, every meal, every poopy diaper, every inhaler treatment, every spilled bucket of toys or water beads, every gtube care and even had to work out how to make his food. She was such a life saver that I’ll even keep her amusing mishaps during the food making process to myself.
She made it possible for me to rest and recover and was able to keep AJ away from me while I was sick. Not everyone is as lucky as I am to have a friend that would be willing and able to step in like that. I’ll avoid being sappy and emotional and just leave it at saying that I’m eternally thankful that she was one of the neighbors that I dropped off cookies to all those years ago.
The weather this week in Pennsylvania was gorgeous. AJ spent a couple of evenings outside on the patio or in the swing. He particularly likes climbing the stairs. Both the outside stairs up to the deck and the inside stairs as well. He’s finally getting pretty good at going back down them too.
Continuing on the commentary about having amazing friends — this week Emily is coming out and bringing Averie with her for spring break. I’ve missed my girl, and I’m thankful that Emily is able to bring her along. Friday AJ will go back to CHOP again for another scope and from there we will discuss our next steps with Dr Jacobs.
And finally – another trach parent did a great drawing of AJ for us in pencil. I’m looking forward to finding a place to display it once we are home!
