We were moved down to the 2nd floor peds unit (but still considered a PICU room) So we are now on the 2nd floor in the pediatric inpatient unit, 2 JC RM 64.
Addie had an OK day today. She has been pretty groggy and just kind of out of it, but I think a lot of it has to do with all of the meds getting out of her system. They did have to start her on some heart meds as they had dc'd the heart med IV drip, so she is getting that orally now, as her blood pressure was getting a bit high. She has had one dose of the heart med and her blood pressure is doing better. This is quite normal for this to happen.
She ate pretty good this morning but didn't eat very well this afternoon and evening. This evening she did finally take about 3 ounces of milk and then another 2 ounces an hour later, so that was good. Hopefully her appetite will continue tomorrow and she can get some more fluids in her. Her soft spot on the top of her head was a little sunken in, but the dr.'s said they weren't worried about it because all of her labs and vitals looked good. It is just part of her getting more fluids back in her. As long as she keeps eating better like she did tonight they won't have to start an IV drip, but if she has another day of not eating very well, they'll have to get her on some IV fluids.
They also started her on some milk of magnesia to help clean out her bowels. This mornings x ray showed that she had some back up going on and nobody likes that! After giving her that she was pretty cranky late this afternoon and evening so it was a lot of holding, rocking, and singing. She finally was able to pass some of that yucky stuff and seems to be sleeping peacefully.
It is very hard because Addie has never really cried very much and so to see her upset and crying is very hard for me. I am so thankful my mom has been here to switch off with me when I just can't take the crying any more. It stresses me out and I just want to make her feel better! I know each day will get better, but today and especially tonight was a little rough!
We checked out of the RM house and Zac headed back to CR so he could work tomorrow. Mom is here till Tuesday, so we figured he might as well go to work now while my mom is here. Mom and I are sleeping on these fold out chair things, which aren't too horribly uncomfortable. We have our own bathroom and shower in this room, so that is nice. There is a chance we could get moved out of what is considered a PICU room into a regular cardiology pediatric room tomorrow, but we'll see how Addie is doing.
We did have a couple of visitors today, so it was nice to start seeing our friends again! The nurse just came in to check on Addie and says she is doing well. I better get some rest because she is going to have to come back around 2am to give her some meds orally, so I know I'll need to be up to help her with that and Addie will hopefully eat some more then too.
I'll try to get some pics uploaded tomorrow!
It looks like things are progressing well. I hope Addie gets the hungries tomorrow! Crying is so hard after you have kept her calm all of this time for her heart. The meds will work their way out and she will be herself soon. Especially now that "things" are moving again.
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Sounds like your little one is doing fabulously! I so remember how hard it was to listen to Dom cry before we could pick him up after ohs. I would end up leaving the room- he knew I was there and didn't understand why momma wasn't picking him up. One of the hardest things to do is walk away from your little one because you know you're only making it worse. But remember with each cry to be joyous. If her heart wasn't fixed, she wouldn't be able to cry like this. Doubt it will make it any easier, but thought I'd share. In our thoughts and prayers....
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