New Things

Olivia has been a champ this week! She has been eating way more than normal, and been willing to trying new things. Yesterday was a different story though. She didn’t really want to eat at all. We are thinking that her appetite was from the steroids, and that now that we’re tapering them, she’s losing that appetite. The Erythromycin seems to be working, so hopefully in time she’ll eat more again.

Another of Olivia’s new tricks is pulling up to stand. Lately she wants to pull herself up to stand on anything possible. We had been keeping her stool upside down except when we were playing with her. She has now figured out how to flip it over so she can stand at it. She’s not cruising along anything, but I think that’s only a matter of time. Then I think we’re in big trouble!

We also found a nurse to care for Olivia when I go back to work in a few weeks. We’re hoping that we can get everything set-up before that. We just interviewed her this week, but decided right away that we really liked her. She got down on the floor with Olivia as soon as she’d introduced herself to us. Olivia is usually timid and sometimes just scared around people she isn’t familiar with, but she took right to Melissa. That was a huge plus! It definitely makes me feel more comfortable going back to school knowing that Olivia will be well cared for in her own environment!

Enjoy some new pics of the cutie pie!

Olivia's new toy at the hospital was a paper cup and a plastic spoon in a wrapper.

Sharing with her baby!

Look at that sweet face!

Food Face!

YAY!

YAY! We made it home this morning! Olivia kept her oxygen saturations up all night with out increased oxygen! That was the requirement for coming home. We're all very happy to be home! Olivia has been all smiles and crawling all over since we got home.

Family Care Conference

The conference went well this morning. It started off a little negative, but quickly turned positive as the doctors there realized that we weren't attacking them,but rather seeking their input combined with that of her other specialists. Dr. Pauli asked some of the same questions we'd been asking all week, but they suddenly had answers when he asked them. We were able to develop a plan to hopefully help Olivia's reflux and in turn hopefully get her to start eating more. As soon as the meeting was done we went to x-ray to have an upper GI study done to check the malrotation that they thought they saw in the same study in November. While we were there they also did a swallow study, which went really well! We haven't heard anything back from that yet. We are also starting her on Erythromycin to help with the her motility. If that works, then that's the end of the plan. If it doesn't work then we'll have a GJ tube placed. That tube will go in the same place as her G tube but it will have an extra tube on the inside that will do directly into her intestine. That will require her to be on continuous feeds from her pump at all times, a pain in the butt for us, but hopefully helpful to her. If that works then they will schedule her for a Nissen. If it doesn't work they will put a G tube back in and we'll be back at square one, and looking at other causes.

In addition to the meeting today Olivia has shown a lot of improvement. She is back down to ther normal oxygen, and they are working on decreasing the steroids that she's on. We're hoping to be able to go home tomorrow or Saturday.

Conference Scheduled!

We finally got the Family Care Conference scheduled for the morning. Olivia's Pulmonologist, Geneticist, GI, Endocrinologist, Speech Therapist, and, via phone, her Primary Doctor will all be at the meeting. We are hoping that it will be a good brainstorming session and we will hopefully get a good plan to work with. There have been many ideas thrown around over the last couple of days, so hopefully at the meeting we can figure out which may be the best for Olivia.

Today was a good day for Olivia. She was put on just oxygen instead of high flow. She started the day at 2 liters and is now down to 0.5 liters. She was much more herself today. The nurse brought in a mat for her to play on the floor. She really loved that, except when we wouldn't let her crawl off of it onto the dirty floor. She was also transfered from PICU service to Pulmonary service today. We'll stay in the same room, but her care will now be managed by the pulmonary team rather than the PICU team. In addition to that, the doctor came in tonight and said that Olivia doesn't have to be on isolation anymore. That means that when the doctors and nurses come in they won't have to wear gowns and masks. Those really scare Olivia so hopefully she'll be even happier tomorrow when she can see people's faces!

Still no idea when we'll be going home, but at least we are on the right track now!