Day 54

What a long day we've had at the hospital! We finally ALL made it home tonight at 6:00. Claire is doing much better than yesterday and is pretty much back to her happy-(although exhausted from the past 24 hrs.)-old self. She and Jared had a decent night last night. We decided it was somewhat pointless for them to stay at the hospital last night because all they did was come in and check her temp every four hours. Pretty sure we could have done that at home....but such is the life of a two year old with MULTIPLE medical issues. We'd definitely rather be safe than sorry. The docts are concerned about Claire and haven't really treated someone as small as her with a blood infection on an outpatient basis. But since we're at the hospital 6 days a week anyway, they are letting her go home and will test her levels and give her the antibiotics after dialysis as needed. Claire seems to be a "first" on a lot of different things out here, for better or worse.

Benson and I came to give Jared some lunch and a break at 12:30 today and we just weren't quite expecting to stay 5 more hours!! It's took FOREVER to get blood levels back, doctors orders, medicine from pharmacy, give Claire the antibiotic (which normally takes an hour but ended up taking 2) etc. etc. etc. If I haven't mentioned this before, I'll just say it now: Hospitals are wonderful and the people who work there are even more wonderful. BUT it sure can be frustrating and annoying for patients and parents to adjust to hospital time verses normal earth time. Big difference. LOTS and LOTS of patience is required!!

Overall, we are all wasted and ready for a good nights rest. But all is well. We'll keep a close eye on Claire, as will many others, as she gets rid of this infection within the next couple of weeks. Not sure yet how/if this affects transplant. Another bump in the bumpy road we've been on lately, but this too shall pass.