I woke up this morning and it was dark and raining. Dr R came in early, but not as early as I thought. I thought it was 5:30 am as that was the time I went back to sleep after Lucy’s blood draw/vitals check, but it was already 7:00. It didn’t feel like an hour and a half had passed since I went back to sleep, but exhaustion can really mess with your biological clock. I was also wrong about the day of the week, Dr R reminded me that this was his day in Phily and that he would be checking in with the resident several times today about Lucy. My response to him was, “Oh I thought you went to Phily on Wednesdays?”, his response back to me was, “It is Wednesday and you need to go home and take a break from here today”! You can really loose track of
life time when you are in the hospital.
We started PPN last night and Lucy did well, so far no complications. Her labs came back with a few elevated numbers, but nothing that can’t be tweaked by some reformulation of her PPN. We also tried to run 1/4 strength Elecare with 3/4 Pedialyte at a rate of 5 mls/hr. It was difficult to see her retching and gagging on this, we gave her a dose of Zolfran and that seemed to help. Dr R wanted to bump up the Elecare to 1/2 strength, but I didn’t think that was a good idea. Lucy was pretty miserable on the the fluid mix she was on. It was hard to override Dr R’s orders when he wasn’t here for me to talk with him about it, but I know my girly and I just didn’t feel that was something she could tolerate tonight. I’m pretty sure we will discuss it further in the morning.
As for our day, we had visitors this morning into the afternoon and evening and that made a dreary day a lot less dreary. Lucy went in her wheelchair this morning down to the pool area to watch her friend Emma do therapy in the pool. I was a little afraid that Lucy would want to get in the pool with Emma since she missed her pool day on Monday, but she didn’t. It was more the other way around, Em wanted Lucy to get in the pool. When we came back to our room our friend Dianna was waiting for us. She brought Lucy some scented hand sanitizer, one of her favorite things. Lucy is big time into smelling things and hand sanitizer is another thing she is into, she loves to rub it all over…well,everything. Raquel came after lunch and straightened up our room for us and brought Lucy some things including some Strawberry Shortcake figurines that are scented, she loved those too. Lucy was also visited by her favorite PT and OT (really her only PT and OT, but they are still her favorites) and that really made her day! Ruth had Lucy laughing, and singing tonight. Oh that’s a sound we have not heard in a while, Lucy laughing. Lucy’s spirits really rise when she sees people she knows and loves, it is amazing to see.
Tomorrow is more of the same, we will try and push Lucy to tolerate some feeds all the while running her on PPN. The GI doctor who specializes in TPN came in and talked with me about our girly’s nutritional status. Lucy has really not grown much in the last six months, and they believe that Lucy will require a combination of TPN and j-tube feeds for both nutrition and hydration. They were not as encouraging about getting Lucy’s gi system up and running as Dr R. Honestly, I really don’t know what to think. Drew and I are still processing all of this, and are living hour by hour, or maybe more like two hours by two hours.
According to the nursing staff, Lucy is the most popular gal on the floor, we have had a steady stream of visitors which has been wonderful! We are being well taken care of thanks in part to the wonderful staff at DuPont and also our wonderful friends and family who are are support staff! Thanks for all that you do, we appreciate it all very much!
Tomorrow I am going to follow Dr R’s orders and get out of here for an hour or so, Diana is going to come and sit with Lucy while she naps so that I can take a much needed break. Please pray for an uneventful medical day tomorrow so that I can have some peace knowing that Lucy will be ok while I take a break from the hospital. The kids will come here tomorrow night to have dinner and attend Chronically Cool Families, our monthly support group for the entire family. I think we are all looking forward to the meeting tomorrow night.