Drew, Lucy, and I are spening our Saturday night together. We did laundry, washed Lucy’s hair, and watched a movie together. So normal, yet not. Drew had yet to spend a night at the hospital during this admission for many reasons. I miss him, it is nice to have him with us tonight sleeping next to me in the reclining chair that I have spent many a night next to Lucy’s crib resting in.
Drew was able to pick Lucy up for the first time in weeks, when we were changing her sheets. It is not easy picking her up, she has eight lines coming off of her body and she is uncomfortable when you bend her.
It has been a relatively uneventful day. Dr. R came in this morning and said that we have A LOT to accomplish in a week, he has his heart set on Disney for us too. Blood pressure is an issue, it is still high and we need to try and figure out what is going on with that. Lucy has gained about a kilogram of fluid weight this admission and we are using Lasix to try and pull it off of her…it is a slow and steady process as we do not want to upset the delicate electrolyte balance in her body. The hope is if we can pull off the extra fluid perhaps her blood pressures with go back to her normal, which FYI were low. We have yet to start the weaning down process, but there is talk of using methadone as a step down drug for her because it can be administered IV and you can go home on it. The bladder issue is just that an issue that needs to be addressed, for now we are keeping in the Foley. Oh yeah, we have to work on getting Lucy to be able to bend much less sit in her wheelchair. I know it’s a lot, but it’s Lucy.
As for tonight, three of our kiddos are having a sleepover with the Puff’s. Oh do I miss those three…I miss tucking them in at night and smelling their clean hair. I am so blessed to be able to at least spend my nights with one of my kiddos and tonight my husband. I am looking forward to being all together as a family of six… soon, I hope.
Thanks as always for you thoughts and prayers, love and support.