So we went up to Children's in Boston for our regular clinic visit. Everyone was amazed to see Juliana. After hearing news about Juliana being on ECMO, many people thought that would be the end for Juliana. Fortunately that was not the case and Juliana is back and better than ever (so I thought). The visit went as usual and Juliana was fairly content after having her afternoon bottle. We discussed increasing her continuous feeds to a rate of 10ml/hr since she was doing very well at 9. After that we were granted permission to start Juliana on some rice cereal mixed with formula and maybe introducing some stage one fruits and veggies. We met with the infection control nurse and started a new ethanol protocol in an effort to decrease the chance of future infection in the line. It seems the surgeons want to wait a little bit longer than I had anticipated for reanastomosis. I actually like this idea better because Juliana will only get stronger with time and the stronger she is the less recovery time she will need. Her lungs are still very weak and will need time to mature. Since we had such a late appointment I decided to hit the road rather than wait for lab results to come in.
Of course this is the time that I get a call on the way home from the hospital. I looked at the caller id and said "oh no". I just knew it was going to be bad. The first question they ask is "how far away are you?" Once again her sodium level was dangerously through the roof. They asked us to come back and I immediately thought back to the last time this happened and all of the driving back and forth from Boston in the middle of the night. Trying to stay awake while driving the rest of the family back home after a 2 am admission to the floor from the ER was just not something I was prepared to do again. I was already half way home and decided to drive straight to Yale where her sodium levels could be safely brought back to normal and I wasn't risking my life driving home in the middle of the night and leaving my baby alone in the hospital for the night. My husband met me along the way, brought me an overnight bag and took the family back home so I could continue on to the ER with Juliana.
We made it to Yale went through the whole admission process which went pretty quickly considering the crowd that was present in the ER waiting area (which I never even sat in). The quickly set up up in a room and then the waiting began. I turns out Juliana has strict orders for no room sharing whenever we are at Yale. I particularly like this idea but it makes it hard to find a room when the pediatric floors are full. We eventually made it upstairs but this time in 7-2 with the school age kids and not 7-3 with the other infants and toddlers. At any rate the attendings at Yale are fabulous. They called Boston first thing and the nutritionists from both hospitals worked together on a new TPN order. I like going to Yale because everyone is so willing to follow Boston's protocols and they really keep me involved in the process. The other big reason is that it is much closer to home.
After re hydrating Juliana and getting her sodium back to normal, they started her up on her new TPN, did some follow labs, and we were headed for home on Sunday. While in the hospital we had some visitors from the PICU and 7-3. It turns out the Juliana has really made a name for herself at Yale. Hopefully this will be our last visit to the hospital till surgery time. We really need to tip the scales. She has spent more of her life in the hospital than at home, so our goal for the next year is to turn those numbers around. I am hoping my next post will be about something a little more mundane like sitting in a high chair.