More Of The Same

It’s kind of late here, it’s been that kind of evening. Today I thought Hana maybe looked a tiny bit better this morning. She sat up in bed and picked at her pancake but ate very little. She drank a fair amount of water but would not touch any fluids with calories or electrolytes.

Unfortunately, it was clear by late-morning that she was not really any better. She didn’t really want to look at her toys or be held. She just wanted to be in bed and watch her iPad. Morning bloodwork seems to really take a toll on her and any cheer she had is drained and doesn’t come back.

Her weight was up even more so they are testing her urine for albumin, as her blood levels of albumin are off and they think this may be an indicator for her fluid retention. She looks puffy and they may start a diuretic. Her Magnesium was again low so she got another IV dose as well as doubling her oral dose. She is back on all her anti-rejection medications.

She still has diarrhea and seems quite uncomfortable just before. She also threw up once today. She just seems pretty miserable. She did perk up again in the early evening after getting a dose of zofran. She even ate two pickles! So maybe she is turning a corner, it’s too soon to say.

The Infectious Disease doctors came by today to talk to us and examine Hana. They seem certain that she is not going to get the antiviral medication unless she either tests positive for adenovirus in her blood (her nasal swab test already came back negative, still waiting on the blood test) or she gets worse than she is now (if she spiked a fever). They also said that adenovirus is very contagious and very hard to prevent, especially because people who are not at all sick can be contagious. So there you go.

The worst part of the day was when Hana’s IV stopped working. That happened after 8pm. They tried messing with it to get it to work again but it ended up being a lost cause. The dilemma then was do we start a new IV only to have to poke her again in the morning for her blood draw or do we drop in an NG tube and see if her stomach can tolerate pedialyte until morning? I absolutely despise the idea of her getting another NG tube but I hate to have to poke her with yet another needle. Since she’s been such a hard stick lately, we decided to save her that pain, save her veins and go with the NG tube. We hated doing it but it seemed like the best option for her.

This is what made our night so late, getting in a new NG tube. Hopefully she doesn’t need it for long. Right now she is snuggled up with Paul in the big chair in her hospital room. She finally seems content.