Thank goodness for 24 hour pharmacies and kick-butt antibiotics. We got out of Emergency at about 3:15am last night, detoured to a 24 hour pharmacy to pick up the antibiotics, and Addison had her first dose when we got home at 4am. By then, exhaustion had won over her urgent need to constantly run to the bathroom, and she was tired and cranky. But by the time she woke up this morning at 9am – yeah, kids are crazy, I know – she was feeling so much better. Peeing is no longer excruciatingly painful and back to a normal pee colour!! We won’t know for a couple of days, once the cultures come back, if this is actually the correct antibiotic, but I am pretty confident based upon her recovery that we are on the right track.
Urinary tract infections, or UTIs, are fairly common amongst children, so might not normally warrant an ER visit…at least for most kids. But as you know, Addison’s compromised immune system means we have to be more vigilant to stay on top of any possible bugs before they wreak havoc. This is our first round with a UTI but I won’t be surprised if we do battle again. Now we know exactly what to watch out for!
So aside from a very tired momma and a slightly-less-energetic 6 year old, it was back to business in the McYong house today. That’s a lot of hospital time for us in just a few days! Wednesday was Transplant Clinic – another ‘good news’ visit. Her cardiologist says, “Addison is looking great!”. In case you missed our Instagram takeover of BC Transplant’s account, here is a quick recap:
The only thing we are watching a little more closely at her next blood work is her Tacrolimus levels. As Addison keeps growing, there will be ongoing adjustments to ensure her medication is at the right level. But as always, it’s a little bit of an educated guessing game. Our previous target range for Tac levels was 2 to 3, but now her doctor wants her at 3 to 4. I can’t say there are clear cut reasons for this, other than the fact she is growing and her target levels have been well below the norm for a while now. Depending on the next round of test results, we may be bumping up that toxic drug again!
We also chatted with Addison’s transplant pharmacist about the statins. Current research doesn’t provide a lot of clear cut evidence about the effectiveness of preventing cardiovascular disease so we wanted to hear more about the rationale. Again, it’s more of a it-doesn’t-seem-to-hurt approach. This is one of the most frustrating parts of this transplant journey. We don’t really know the absolute best path. We just have to trust our team, and trust our instincts. And last night was a good example. No one wants to drag their kid to the ED at 11pm on a Saturday night, but we knew that was the only way to get Addison treated as quickly as possible. And by the time we got to ED, her pee was pink. So one night without sleep…definitely worth it for this transplant family.
Elaine, Aaron, Addison and Charlie