So I’m not sure what they were doing in the hospital last night but it sure was noisy. Several loud bangs managed to wake Nica up at around 3am and again around 4 and maybe 5. She never went back to a restful sleep and I knew we were going to have a difficult day as a result. She also had a hard time going to sleep as she kept screaming and crying for Papa, that’s my dad. She hasn’t seen him in a long time and she was having some real withdrawal issues about it.
Our 8am therapy session never happened. I think they got their wires crossed somewhere. That was OK though because the plan was to work on dressing and feeding and since breakfast didn’t show up until after 8am it worked out. They tell you that breakfast should arrive around 7 or 7:30. It gets here later and later. each day. Nica barely had time to eat a yogurt this morning before it was time for PT. We did get to see Uncle Pastor Tim bright and early at about 7:40am though. It was a nice surprise. Maybe he could have brought breakfast if we had known how the morning was going to go. Tim figured since he was out checking on some new babies and their mothers he might as well stop by and say hi.
Katie was at Nica’s staffing this morning so we had Ms Alexis for PT. The walking didn’t go so well. Nica wasn’t having it and she screamed so loud that the nurses on the floor were getting complaints from patients. Alexis said, tough we’re not doing anything wrong Nica is not happy and she’s telling everyone. It’s part of the behavior problems Nica has always had. Anyone who has heard Nica scream full voice knows how loud she can be, but to disturb a whole floor or at least a whole wing, now that’s my girl. We quickly moved on to the tricycle and things improved. I did remember about the redness I had seen in her upper thigh/diaper area and figured that that may be causing some of her walking problems. It also dawned on me that Dr. Kornburg cut her meds again. Instead of the 30mg/day of baclafen that she was taking when she got here, as of last night she is now down to 10mg/day. So far, we haven’t noticed any muscle tone issues due to her reduced dose but we’ll need a few days to see how this really affects her. Also, we’ve been able to reduce her daily Miralax from 1.5 tsp to .75 tsp per day. I’m glad we can pull back on so much stuff thanks to the operation.
In keeping with the spirit of exhaustion brought on by our interrupted sleep, we did a full morning, PT, ST, and OT all back to back. Lunch was also an hour late arriving which was OK because it got to our room 5 minutes after we did and a hot meal around here is a novelty. Sadly, Nica was just to tired to eat it. She made it through one chicken nugget before she was nodding off. I put her to bed for her nap and she was still sleeping when it was time for afternoon PT. Katie was about to just let her sleep rather than start afternoon therapy, but she no sooner closed the door to leave and Nica woke up. It was great timing too, because Bonnie, the Nurse who helps head the rehab team and hands out all the chocolate, was right outside the door and when she heard Nica crying she poked her head right after Katie came back. It gave us all a chance to take a good look at Nica’s red spot. We all agreed it was starting to look really raw. It seems some of Nica’s equipment is rubbing her the wrong way and causing some bad chafing where you really don’t want it. Bonnie put in an order for some barrier cream and we are now using that with every diaper change in hopes of helping the skin heal and help Nica feel better.
Armed with this knowledge of her chafing, we stayed away from walking in the afternoon and instead worked on standing. That wasn’t the greatest success either as it seems Nica’s back may just be getting tired and sore. She’s never worked so in all her life and I’ve rarely worked as hard as she does. On the surface, it’s almost cruel how hard they push these kids when they’re here, but it’s called rehab not camp and it’s going to take a lot more hard work before we can think about slowing down. In the staffing this morning they said that Nica is doing great but that at this point they’re looking at 3-4 more weeks in here. I didn’t get the full debriefing about the meeting yet but Bonnie said she will sit down with me to discussed the teams conclusions and suggestions.
Towards the end of afternoon PT Grandpa Joe snuck in for some much needed play time, I’m just not sure who needed it more. The two of them played dolls for a while before moving to the work bench and then back to dolls again. Stephanie and Kelly, the ladies who run the Child Life Center had to kick us out at 5pm when it was time for them to go home. They said they’d see us tomorrow afternoon as they are hosting an end of chemo party for another patient on the floor. We headed back to room where we watched some classic Disney cartoons and decided not to eat the oranges we asked for before Dinner arrived an hour late. I’m beginning to wonder if someone played a joke and reset the clocks in the kitchen. Grandpa Joe had to go home and it was dinner for two. Nica finally got to eat and stayed awake long enough to do so, but just barely. She made sure she was going to get a bath too as she ate this evening. She got food everywhere and yet all that food eventually made it into her mouth, even if it took the long way to get there. Bath time went well even though she pooped in the tub again. I hope this doesn’t become a regular thing, no pun intended. Tonight’s meds came in a timely manner and we had lights out by 8:15pm. Let’s hope that tonight is quieter than last night.
