“People who live in difficult circumstances need to know that happy endings are possible.” - Sonia Sotomayor
For a day that I thought would be pretty laid back, we stayed pretty busy.
When we arrived at the hospital we thought that they'd take her vitals, flush her central line, and give her a dose of Palifermin and then we'd have to wait around for a 15 minute class on how to take care of her central line. Mostly it would be a day of cooling our heels. No, no, no. We found out that there was much more on the plate than that.
Elise had a Pentamidine breathing treatment scheduled at 9 am that we were unaware of. She also was supposed to start a new medication, Acyclovir and get blood work done. The blood work needed to be done before the pentamidine treatment so that it was available during "grand rounds" later in the morning. And the palifermin also needed to get done before the pentamidine because the medication mixture goes bad within an hour of mixing and it was already mixed.
So the nurse hustled and got it all done before we headed off for the breathing treatment. I was impressed by how organized and on top of everything she was given the changing timeline.
The acyclovir is an antiviral that helps prevent thinks like herpes (of different varieties), CMV and other nasty infections from taking hold while Elise's immune system is suppressed.
Pentamidine is used to prevent pneumonia caused by the organism Pneumocystis jiroveci (carinii). The treatment is given by a nebulizer and it takes about 30 minutes once per month. It apparently tastes really bad and can also cause an asthma attack. Even with the warning Elise just about gagged when the treatment started due to the taste. She had a slight drop in her blood oxygen level and so they had to giver her albuterol treatment about halfway through it. Apparently this is fairly common. The respiratory therapist said next time they'd just start with the albuterol. In any case it took about an hour before the taste left Elise's mouth enough that she didn't have a sour look on her face.
Following the pentamidine treatment the grand rounds started for Elise's study. About 10 MDs and PAs crammed into Elise's room, asked some questions, poked and prodded a bit, and then answered questions we had.
My first question was about the switch to fluconazole from posaconazole that Elise has been taking for a couple years to prevent fungal infections. We'd tried a few other triazoles in the past and posaconazole seemed to work for her, so I was curious about the change. They said there were two reasons for the change: 1) fluconazole is better at preventing candida outbreaks which are more common in transplant settings; and 2) they wanted something stronger available (ie posaconazole) to use in case something unusual cropped up.
Elise's blood work also came back and showed that her potassium level was slightly low. I'd never noticed if it was low in the past. In any case, they gave her a potassium supplement and will be watching it along with her extended blood panel on an almost daily level from here on out.
Elise also had "school" today for an hour. The local school system has a classroom in the children's wing that is staffed by two teachers. I'd spoken to them about keeping Elise fresh during the summer and also helping her with math. Elise has done well in school but with all the travel to NIH this past semester (4 different trips), her math understanding suffered. So they are going to try to go back and pull her forward so that she can start the next school year on step. They actually assigned her homework tonight! It's a good thing as she's getting really bored and can get testy when there's nothing to occupy her time.
In the afternoon Elise and I went to a class on how to take care of her vascular access device (VAD) which was placed last week. It's a common source of infection (which is particularly bad for the immuno suppressed like her) so good "care and feeding" is important. I figured the class would be about 15 minutes, but it went over an hour with hands-on practice followed by a test. Yes a test! Elise and I both scored 100%.
After that we went back to the room where they went over another study assent with Elise. They are really good about going over the details and really giving you the option to opt out. Just about everything requires a consent so this wasn't the first and won't be the last. This particular one allows them to collect data on the donor/recipient pairing and outcomes for future study. Elise's most favorite study (not!) is one where they collect poop and have you fill out a survey about how you feel. They said they are finding out a lot about how the microbiotics in your system affect your overall health in significant ways; think about when they found out that most ulcers are caused by a bacteria rather than stress. Who would have known? In any case Elise thinks that one is embarrassing and weird, and she thinks the Dr. is a little too interested in poop.
The day ended on a high note: the Au Bon Pain in the lobby had the chocolate dipped shortbread cookies that Elise likes. And they've let Elise out on pass for another night. So it wasn't all bad.
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