Good morning all,
Ethan woke up during his 4a vitals/blood draw/diaper change, so I got up to help him go back to sleep. Now, he's asleep, and I'm awake. Oh well...
Let's see, Sarah last posted Saturday evening (T-11). That leaves me Sunday and Monday to catch you up on.
The quick summary is that Ethan is doing pretty well. His fevers come and go. Sometimes it's 102-103, sometimes he's normal. His energy comes and goes with his fever. But he's still eating very well. His blood pressure is up from 90s over 50s to 120s/60s. So the doctors have added an additional blood pressure medication. Overall, he's tolerating the chemotherapy well.
|Saturday and Sunday were a lot of this.|
Sunday was much the same as Saturday, Ethan's fever came and went. When is was high 102 or so, he felt pretty crappy. When it was lower, he was happier and you could get a good smile from him. But mostly, he was content to snuggle and watch a show on his iPad.
Ethan had been pretty rashy on Saturday and early Sunday. We had started using a topical body oil/steroid combination that his dermatologist prescribed for his eczema. Whether because of that or just the natural ebb and flow of these things, we seem to have gotten ahead of it by Sunday afternoon and into Monday. Yesterday, the transplant docs put the kibosh on that, so we'll have to see if the rash returns today.
He had a good three hour nap on Sunday, slept really well Sunday night and woke up happy and with lots of energy on Monday. We had a good time on Monday. We were able to unhook his IV for almost two hours. Just as Ethan realized that he's on isolation and not allowed to leave the room, the physical therapist showed up to play.
While Ethan is inpatient, he'll have regular physical, occupational and speech therapy. Mostly this is to help get him out of bed and keep his body conditioned during transplant. But hurler's kids need PT, OT and speech therapies anyway, and the really nice thing about having them inpatient is they don't count against our insurance company's dinky 20 outpatient visit/year limit (each specialty). Though, I suspect that we'll use up those 20 visits when the conditioning and rehabilitation continues during his outpatient phase here.
The physical therapist brought a playmat and an indoor toddler's bowling game. We had a blast bowling. We were having so much fun that we got "shooshed". One of the nurses came by and said that one the kids next door was feeling particularly bad and that our cheering has bothering him.
After PT left, OT showed up. Where physical therapy focuses on big energy, gross motor skills, occupational therapy focuses on fine motor skills. So the bowling was replaced with coloring and with a magnet toy where you could build things out of magnets and connecting rods.
It sounds like PT, OT and Speech are going to show up about every other day for 20-30 minutes or so. They won't bother him when he's really feeling crappy, but they'll visit even more frequently post transplant when he needs to build his strength and energy back up.
Ethan was in such a good mood yesterday, that I couldn't convince him to take a nap. That was something of a bummer for me,as I had planned to take a shower during his nap. But the upside was that he crashed out really quickly at bedtime at 8, and has had a pretty restful night.
Let me try to give you an idea of how Ethan's condition will progress, because it's a little surprising and it may not be what you think.
On transplant day for Ethan's first transplant, I remember thinking that "all of this wasn't so bad." Sure he'd had fevers and low energy during the chemotherapy and radiation, but aside from feeling down, he was in pretty good shape.
|The chemo drugs are so toxic that the|
nurses where full protective gear, when
administering them. And they bring
along another person to double check
them and make sure that they're giving
the dugs to the right person.
The thing is, the period during the chemo and prep regime is fairly easy. It's the period after transplant starting around T+4 or T+5 that Ethan will feel completely awful and that he'll medically in the most danger. It's during this period when the chemotherapy and the radiation starts to break down the soft tissues and one starts to see mucositis in his GI tract and sores in his mouth. In addition, the medicines delivered during chemotherapy are toxic. When Ethan goes to the bathroom, his pee and poop contain a certain amount of those toxins. Eventually, he's going to get a horrible diaper rash. His skin under the diaper will likely crack, creating an additional infection risk. It's pretty awful and he's going to be in a fair amount of pain, just from that.
Without an immune system, the soft tissue breakdown, skin cracks from diaper rash and airborne viruses, Ethan will be particularly susceptible to viral, fungal or biotic infections during this period.
After the new cells start to engraft at about T+14, Ethan will start to produce white cells again and he can start to heal himself.
Once he starts to engraft, however, he's at risk for graft versus host disease. Graft versus host complications can result in significant, life threatening tissue damage including both the skin and the organs.