Because Hannah was able to get some rest last night, the docs decided to give her one more day off on weaning any meds. She spent the entire day agitated, uncomfortable, and just not happy for the most part. One of us (me or Daddy) needs to be right at her side all day long because she is just so miserable and withdrawing so bad. I’m so relieved that Daddy was able to extend his visit here until Monday night, because I don’t think I would be able to make it all by myself.
They also let us transfer Hannah to a adult-sized bed instead of the cage (I mean, the crib). We were hoping that cuddling her would make her more comfortable, and we had a sign a waiver since it is against their policy. The irony is our nurse suggested it! Our plan was that one of us would sleep with her in the bed, and the other one would sleep in the couch bed. True to Hannah form, when she fell asleep, she was right in the middle and completely stretched out! Like we are going to move her now that we got her to sleep! So Daddy and I are tag-teaming sleeping (I slept from 10 pm until 1 am).
The PT came by to work with Hannah today. She worked on trying to get Hannah to sit up and to stand (for weightbearing purposes). Hannah worked so dang hard, but her body is just so thrashed. Her neck muscles are so weak that she flops like a newborn. It made me very sad. All that work over the past year plus with all her therapies have been wiped away with a single hospitalization.
Even though Hannah was awake all day, she actually fell asleep around 9 pm after Daddy and the nurse gave her a bath, and I was combing her hair. Even though we come it out every night, today she developed a huge mat in the back of her head, and I was able to comb out most of it, but I did ending having to cut out a little chunk of her hair because it was just beyond tangled. Unfortunately, they don’t have good hairpieces here because everything we use falls out pretty easily.
Hannah spent the day on the HME (humidifier nose) attachment on her trach and did well. Tonight, she is sleeping on CPAP set also at room air. Our goal for nighttime is to get her to only a humidified vent and not CPAP. But I don’t think they are going to touch that until our regular attending comes back on Tuesday.
The resident came in about an hour ago (midnight) and was worried because Hannah has not peed in over 11 hours, and she barely peed this morning. She has had no issues with her kidneys since we got here, so now I’m nervous about why she is experiencing urinary retention now. They want to come back in about another hour and do an ultrasound on her bladder to see if there are any signs of anything.
Please, please Hannah pee. We want to get you well and at home and don’t want you to have to go through any more complications like acute kidney failure or something.
First of all HAPPY FATHERS DAY Bobby! I actually talked to Abby a few minutes ago, she is adorable, we talked like we have known each other forever. We made a pact that we will see each other in Vegas soon.
Sorry to hear that Hannah has not peed in such a long while. Im praying that she will pee soon and that there are no kidnew problems. We dont want any other complications so we can get her to Vegas ASAP!!
The new sleeping arrangements sound wonderful, anything to help her rest right?(not to mention getting closer to your baby girl) Takes a nurse to suggest that huh? High five that nurse for me!!
Hope you all rest well tonite and that tomorrow brings good news!
Susan
Now she is probably agitated because of not peeing which is probably because she is still reeling from all the drugs. Its such a vicious cycle. Hopefully she has a full bladder and they can cath her real quick and that will jump start the process! All the PT progress will come back a lot quicker than you think although I totally understand the frustration of seeing all that hard work gone in the blink of an eye. After a few times with V it definately seemed not worth it to try so hard. But I feel terribly guilty about that.