I arrived at the hospital today right around 11am just in time for "rounds." This is where a team of 6-8 doctors and residents all gather around Julia to discuss her case. The nurse practitioner (I think) gives the team an update on all that went on in the past 24 hours with Julia and any concerns. Then the team discusses changes that need to be made to Julia's plan or whatever. I (or Bob) am more than welcome to be a part of this by listening to what they are saying as well as ask any questions or speak up about any concerns I have. The doctors and nurses are always very receptive of questions and take what I say seriously. I feel very supported and valued by them. Before I got there, Julia had an upper GI study done. They had her drink some barium and then watched with an X-ray how it went down. They want to find out why Julia is having so much difficulty with her feedings. She is still spitting up a fair amount (reflux probably) and she has developed this horrible gag reflex. After they left, I ordered lunch and then sat down to pump. (It's seems like it is always time to pump.) I just get done pumping and then a pediatrician walks in to chat. (I really like this woman! She is the one who cried with me the night Julia was admitted. She has been checking in on me and Julia regularly every since we were admitted.) So I ate lunch while talking to her. Then finally at 1:00, I got to sit down and hold Julia (after being there 2 hours!) Not long after Julia and I get comfy, the woman arrived to do Julia's echocardiogram. She had to haul in a huge machine to do it. Since Julia was sound asleep, she just had me hold her during the echocardiogram. Then about 3 minutes into the echocardiogram, the PT and OT arrived to check in. I had not met either of them before. They agree to come back in an hour after the echo was completed. So the woman completed the echo and after a small battle with getting the cable out of the computer, was finally able to pack up the large machine and head out. Julia's heart rate kept rising a bit during the echo and so her the nurse spent some time looking her over after the echo woman left. We decided she was okay, but she would make a note of it. Julia and I had about 15-20 minutes of peace when the PT arrived. I put Julia back in bed. By this time she was waking up. The PT started working with her and giving me exercises to do with Julia. It made me feel good that I had already been doing many of them with Julia. However, in the middle of working with her and showing me how to tilt her pelvis up to relieve her abs from doing a lot of work so that she could work on kicking, Julia started throwing up. Just about that time, the OT came into the room. I don't know if it was the compressing of her tummy or the fact that she had to poop a bit, or both, but it made her spit up. Also, when the OT was working with her with the pacifier, she gagged and that didn't help either. It was decided that she has a super sensitive gag reflex and that we should not really work too much on putting stuff in her mouth until she starts tolerating food a bit better. Sigh. Well, now it was about 3:00 and I needed to go. Just then the social worker came by. I spoke with her briefly as I started to pack up my stuff. I made sure Julia was nice and tucked in. I rubbed her head, told her I loved her, and said goodbye. I got in my car and drove to pick up Mattie.
It was definitely a bit more busy than usual... but this was not terribly unusual. It is often a bit of a revolving door when I visit Julia during the week. I look forward to having her home eventually.
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