Ana and Jim were up at the crack of dawn for another follow-up visit at Columbia today. I tried to wake up at 5:00 a.m. to usher them both safely out the door and on their way. I really did, but I could not get myself to move this morning, so the last thing I remember is Ana poking her head into my room and saying good-bye. The next thing I knew it was 6 a.m. and they were long gone.
Luckily I kind of expected that would happen given the current level of sleep deprivation I’m enduring, so I made a card for Ana and stuck it in her lunch (Jim made her lunch this time). It had all kinds of stuff on it – including decorative duct tape around the edges, a collage of cute cats clipped from my collection of Cat Fancy magazines (provided to me by my good friend Liz who informed me that this is as heavy as my reading material should get right now), and a list of things I want to happen today. Ana loves lists. Here’s a summary:
- You get a good phlebotomist who finds your vein in only one try
- Your labs come back good
- You have a yummy lunch that you thoroughly enjoy
- You can stop taking diuretics and they reduce your prednisone
- You are on your way home no later than 1 p.m.
Ana texted me at around 9:00 and said the phlebotomist got her vein on the first try so she was able to check THAT one off the list. Item #1 was inspired by a painful visit to Donna – our local phlebotomist – who I took Ana to see yesterday morning in an attempt to get her blood drawn before today’s visit. It turns out Ana was dehydrated and Donna could not find her vein – or rather, when she did find the vein (on the second attempt) the blood would not come out. That was super fun, as you can all imagine.
Now about this whole dehydration thing. I had mentioned it was causing me some stress on Friday, when Ana had that crazy hand-cramp thing happen. Jim and I stopped one of her diuretics at that time (even though Dr. Martinez never actually confirmed that it was okay to do that). But we did not increase her fluid intake which we have been restricting to 40 ounces/day. Normally that level of fluid would probably be fine – but Ana’s still on Lasix, which is a ridiculously potent diuretic. We’ve also been watching her salt intake, though not quite as militantly as in that first couple of weeks after she was discharged.
So fast forward a couple of days after the hand cramping and we could literally see Ana’s stomach shrinking each day, to the point where it’s nearly flat. It’s nearly CONCAVE. She looks like a stick figure, as per Exhibit A, below.
This photo is not doctored. I thought maybe she looked stretched out because I sort of took it at an angle (we were in Goodwill in Kingston – she wanted to go there because her new favorite song is “Thrift Shop” by Macklemore & Ryan Lewis.) Everything behind her looks proportionally accurate, but she’s only represented as 2 dimensional. Needless to say, we’ve increased her calories (and I bought those boots for her).
Live and learn – when diuretics are successful they are REALLY successful. The result in Ana’s case was dehydration – which we discovered the hard way yesterday when she could not get her blood drawn. Our only direction from Dr. Martinez (on Friday) was to take her to the E.R. if the hand cramping got worse so they could check her electrolytes. However, we hate the E.R. It’s really no fun. It made sense to Jim and I to give her Gatorade and not restrict her fluid intake anymore. We also let her have more salt (you need salt to retain fluid). Then yesterday I made another executive decision and did not give her Lasix with her morning meds (this decision was made while driving home from the unsuccessful and tear-filled phlebotomy visit), nor did she get any this morning because she needed to get her blood drawn before 9:00. We told her to drink a ton of water on the way to the hospital too. I hope this is why they were able to find her vein on the first try.
Now, having said that, I have to say that this kind of decision making is HARD. It’s like – normal parenting, but if you fuck up, your kid can end up in the hospital. I still don’t know if stopping all of her diuretics without express permission from the hepatologist AND increasing salt and fluid was the right thing. Sure – she feels better and was able to get her blood drawn – but will the fluid come back? Fluid poses an infection risk. Still, at some point I feel like I have to be a parent and go with my gut. I’m not going to stop her anti-rejection medication, of course. But taking her to the E.R. because of an electrolyte imbalance which exposes her to hospital germs, subjects her to a painful I.V. insertion, and keeps her imprisoned in bed for 4+ hours while they fill her full of fluids that she’s just as capable of drinking via that thing in the center of her face – e.g., her mouth just doesn’t make any sense to me. We did email every single thing we’ve done to Dr. Martinez and Maria – and I sent them daily updates on Ana’s weight which was all over the damn map the last week (she’s literally been losing and gaining the same five pounds for the last 2 weeks).
I hope I’m not being foolish by trying to make these kinds of decisions and not waiting to hear back from Dr. Martinez. I recently read in a book called “Far From the Tree” about kids with various illnesses, disabilities and differences (e.g., autism) that parents often have the best “read” on their kids’ health, but our instincts are very often dismissed by physicians because we’re not experts. I truly believe that we, as parents, are a KEY part of Ana’s care team. Questioning everything – EVERYTHING is essential. I’ll post an update on today’s visit when I know more. Here’s a picture of Pepper – your reward for listening to me rant.