We had Maryam's pre-admit meeting today. We have a team of 15 people working with M....crazy, right? They told us about their plans of action. Day one, no boluses, she'll get a bolus via pump at 10pm of 300mls of pediasure over a duration of 2 hours. And that's what she'll get every night. That basically means they're cutting her bolus down by 70% and she'll have to make up the rest during the day.
I'm going to be ordering her food off of a menu. The food will come to our room about 30 minutes prior to therapy. I'll take M and her food tray down to rehab in a wagon. Once we're down there, they'll puree her food. At that point she has exactly 50 minutes of therapy. This will happen 3 times a day starting at 8:00am, 12:00pm and 3:00pm. Her 10:30 snack and 5:00pm dinner will be in her room with me.
She has scheduled play time (in a play room on the floor) and scheduled massage times (with a traditional Chinese medicine doctor). And every Friday the team meets to go over what happened during the week and make any necessary adjustments for the following week.
Brett won't start feeding her until week 3. CRAZY. That means, its ALL me! AGH, scary. At first we were told that we would have a rocking chair in our room so I can rock Maryam to sleep. I know its not "age appropriate" but I LOVE ROCKING MY BABY TO SLEEP. Well, we found out today that we aren't going to have one. So, now her bed time routine is changing dramatically. She not only isn't going to be rocked to sleep, but she's also not going to have her bolus. She has been rocked to sleep with that combo for over a year now. It should be interesting (my nice word for stressful) getting her to go to sleep on Monday.
Yesterday her total oral caloric intake was 409! She drank an entire can of Pediasure by the end of the day!!! She was averaging about 2 ounces every 4 hours. That brought her weekly total to 1189! (Thursday to Thursday) Pretty freaking amazing if you ask me.
The sad news is that on our drive home after the meeting Maryam pulled so much hair out of her head that she made a bald spot right on top. Its heart breaking. She is so stressed. I hope that these massages can help her relieve some of that stress so her poor scalp can get a break.