Well, we're all checked in and completed our first day at CHOC. We arrived at noon and were checked in by 12:30. We were in our room by 12:35. They're very efficient here.
Our nurse's name during the day was Linda and her assistant's name was Scott. Both of them were very nice. Maryam cried as soon as they came into the room. She has a serious fear of anybody wearing nursing scrubs or white coats. It sucks. After they got her weight they switched out the crib for a twin bed. We didn't want Maryam to go back to sleeping in a crib when she has come so far in her own big girl bed.
At around 2pm her Child Life coordinator came and got us to go check out the floor play room. This place is amazing! They have 3 different kinds of gaming systems for the big kids!! Too bad Maryam's not big enough to play Wii Mario Kart. Bummer for Mommy. However, she did love playing with the other children in the room and checking out the hundreds of toys.
At 3pm we came back to her room for a therapy session. Today was the only time therapy will be in her room. The rest of our stay therapy will be held in the basement in the Rehab department. Today's therapist was Jennifer the Speech Therapist. She is very nice. Maryam chowed down on some whipped cream (not Cool Whip because whipped cream has WAY more calories in it) and some Ensure chocolate pudding. I guess they like the Ensure because its fortified and has a ton more calories than normal pudding. All in all she ate 1/4 cup of whipped cream, a little over 1 ounce of pudding and drank about an ounce of Pediasure. The Pediasure has an additive called Duocal. Duocal brings the caloric value of the Pediasure from 1cal per ml to 1.5cals per ml. So its like she's drinking 50% without actually having to drink 50% more.
After the 50 minute session with Jennifer I went over everything she told me about Maryam's schedule and how to count her calories and how to log everything so that I wouldn't forget by tomorrow. Daddy brought all of Maryam's toys and clothes up so we could make her room a little more like at home. We put Mickey Mouse Club House sheets on her bed and set up her toys so she could easily access them whenever she wants them.
At 5pm one of the dietitian techs came in and went over the calorie counting and menu planning with me again. Her name is Jessica, I think. She told me that Maryam's calorie chart will be picked up everyday about mid morning and given to the nutritionist. It all seems so very hard corp!
At 5:30 Dr. Katz and Nurse Robyn came in to check up on us. They run the feeding team. They came in to make sure that everything is running smoothly so far. We had a few mix ups with meds, but they were fixed before Maryam actually needed her nightly meds. Dr. Katz explained that he wrote orders for Maryam not to be disturbed between 8pm and 7am so that she can get as much sleep as possible. How RAD is that? Too bad the freaking janitorial staff just came into to get the trash at 9:20. I guess that no disturbing rule only applies to medical staff? Ha!
At 6pm Maryam's dinner tray came in. She's on a puree diet. So, everything I order for her comes in already blended up. She got spaghetti and meatballs and some sort of chicken thing, and mashed potatoes and gravy. On every tray she's going to get whipped cream, Pediasure and Ensure chocolate pudding. She ate about 75% of the spaghetti! Woohoo! She wouldn't touch the chicken stuff or the mashed potatoes. Old tried and true whipped cream and pudding went down well too. She drank about 1.5 ounces of Pediasure too. Dinner went fairly well, I'd say.
At 7pm I put Maryam in the bathtub. She always enjoys her bath. Our room is FREEZING cold so when it was time for her to get out of the tub she was very cold. She kept saying, "too cold mommy, too cold....back in peeez." Apparantly the temp should be fixed at some point. We've asked 4 times since we checked in.
At 8pm Maryam's evening staff came in to meet her. Our nurse's name is JoAnn and her assistant's name is Wendy. They're both very nice. JoAnn showed me how to use the feeding pump and brought in Maryam's meds. The pump is very similar to the one we used to have so it was a no brainer.
By 8:30 Maryam was asleep! At 9pm I started her pump and then sat down to update the blog.
That's my day. Hopefully tomorrow I'll have a better signal and can upload photos. Nighty night. I'm exhausted.