What a day of events yesterday! On Sunday Nathan was moved from the PICU to the Children's Surgical Unit. Being on this floor has its ups and downs. First of all, it has been extremely strange and frightening to Jake and myself that on this floor a nurse has 2-3 patients instead of a max of 2. The nurse here comes in the individual child's room and checks in on the child when the monitors are beeping; she doesn't stay by the child's bedside to monitor the child's condition. We have been so used to having a nurse within a couple of feet of Nathan as was in the NICU and the PICU so we have taken turns sleeping over in Nathan's room to watch him ourselves. It has made for a couple of long nights for both Jake & I. The ups are that it is the land of the everlasting slushy! We had Elisabeth come up and see Nathan on Sunday. At first she was very scared but after I talked to her about all of the wires she leaned over to Nathan, kissed him, and told him to get feeling better "bug". She has been so good in his room because of the tv, dvd & vcr player, play station 2, and all of the room to color and move around. The slushies have helped tremendously too!
I am so glad though that we have made the effort to stay by Nathan. When I came yesterday to relieve Jake from his post he told me the occupational therapist had only come in momentarily to talk about ways to help Nathan eat. She actually hadn't touched him though. Jake said that she had only talked to him for about 10 minutes max. To top it off the cardiologists team came by and told Jake that Nathan looked great and they were going to discharge him tomorrow. I was so angry; in my eyes Nathan didn't look good enough to come home and who on earth was this occupation therapist that wasn't doing her job? In retrospect for yesterday I actually feel a teensy weensy guilty about the way I treated the RN over Nathan. I demanded to speak with the cardiothoracic team's nurse practitioner, the occupational therapist and the plastic surgeon (regarding Nathan's poorly shaped head). She said that she could handle most of my questions since she had been there for rounds that morning. I told her that although I appreciated her report that I was specifically requesting to speak to those individuals again. I learned from the NICU that when a parent makes a request to speak directly with the doctor that those requests have to be honored. I could tell she wasn't happy with me because I had just added more things to do on her workload.
Within the hour the occupational therapist came and talked to me again about what she had told Jake. I told her that was fine, but I'd actually prefer watching her hold Nathan with a bottle and using some of the other techniques. She didn't say it in so many words but basically she told me that Nathan wasn't going to eat for her and that she wasn't going to waste her time. I then told her that she was the occupational therapist and that it shouldn't be that hard for her to come back and actually do her job. She gave me the look of all looks and was stuck because the nurse had just walked in on us arguing. She didn't come to work with Nathan until 4:40 p.m. because Nathan had been taken downstairs for a complete echo cardiogram. Nathan had missed his feeding and he was one angry child! I soothed him the best I could but he didn't want anything to do with the bottle; he just wanted to be fed. The good thing though is that the occupational therapist actually loosened up a bit and asked if Nathan had been seen by a craniofacial clinic. "A cranio-what?" I asked. Apparently there is a clinic for kids to be seen who need cleft repairs and have jaw issues like Nathan. I was elated to find out about this! She also asked who was repairing Nathan's clefts and I told her we had planned on the Dr. Marshall Smith, ENT. She suggested that before we go that direction that I speak with a plastic surgeon. That particular occupation therapist still wasn't my favorite individual but at least I had gotten some helpful information out of her.
I never saw the cardiothoracic nurse practitioner; I did however have Dr. Siddiqi, a pediatric plastic surgeon, come into Nathan's room and evaluate his head. I explained Nathan's large soft spot and that he had spent half of his life lying in a hospital bed. I told him of our struggle to keep Nathan turned off of his flat side and the instructions we had given the nurses when we came back for this hospital visit regarding his head. I then told him our insurance year starts over on July 1st and that we would need to begin paying on the catastrophe cap again. It would save us a large amount of money to get Nathan a helmet now instead of later. Dr. Siddiqi agreed and is going to write a prescription for a helmet. The other great thing is that I was able to talk to him about Nathan's cleft and how the repair would work. That was the most beneficial part of our conversation. It turns out that the plastic surgeons are able to have the cleft temporarily repaired at age 2-3 months. They sucher the soft palate together and then put in a retainer-like device to cover the hard palate. This stays in place until Nathan is close to a year old. At that point the repair would be done completely. I was so excited to hear that news. The ENT didn't want to begin the repairs until Nathan was 12 months old and then around 2-4 years old to make the final repair. This could be a major milestone in helping Nathan get rid of the button sooner! Because I had asked so many questions and spoke my 2 cents about how I felt about Nathan, it looks like his earliest discharge would be tomorrow (June 11th). I feel better about things now instead of how mad I was yesterday morning. It just goes to show that you have to speak up to get what you want.
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