today/tonight

not a great day today. After last night it didn't get a whole lot better. Zoe lost her IV last night and we spent a good part of the day today trying to get a new one while coordinate her care. She went to get a different type placed using ultrasound but after 2 tries we were unsuccessful. They put a small one in a vein in her forehead just in case she needs it but it might not be much use as they have to be really careful what they put in it as it is so close to her eyes and face and if it blows it could be bad. We were able to be with her for the whole thing though, which was good- Genevieve comforting and distracting Zoe and Gavin holding her arm in a variety of positions while the nurse tried to get it in. Zoe's veins are all just too small, blown or blocked by the amount of fluid in her tissues. Plus she went about 14 hours with no fluid so she was dehydrated again. Right now I am just sitting here, typing this and occasionally getting up to repostion Zoe's oxygen mask (she needs both a mask and nasal cannula's to keep her oxygen level up) and trying to prevent her pulling out her somewhat minimally taped IV.

She was poked around 14 times told today- no sites for IV's of bloodwork left. If she gets sick again toinight we will have to move onto other even more invasive options. Genevieve and I have been kicking around the idea of getting a PORT put in Zoe- an implanted IV reservoir that gets access by a needle when required. Some risks but now we are definately going to move ahead with it when she is healthy enough to get it. We can't keep doing this to her- it's just not safe.

Just gave Zoe a breathing treatment- 9 PM. Desat-ing somewhat.

Zoe has a viral infection on top of her bacterial urinary tract infection- human metapneumo virus (hmpv). Two for the price of one, I guess.

Today was a frustrating day- it seemed like her health care team was very disorganized and what one team thought didn't match up with what the other team was thinking. It came together later on and we ame up with a rough plan for if she has a good night and continues to improve or if she has a bad night like the last two and she startslooo to get worse. As it stands they are hopeful that she will stay stable and get better with the various treatments, time and her own healing. Time will tell, I guess.

Genevieve went over to hotel with Ailsa and my mom and I'm staying here tonight- I really did not want to be away tonight and Genevieve really needs her sleep (and Ailsa too!)

Anyway, not all bad- there could be some improvement if she doesn't get worse overnight. We'll see what tomorrow brings.


thanks for all the support and good wishes. we'll hope tomorrow is an easier day.

love and stuff
GGZA