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!

Looking a Little Better!

Olivia seems to be doing a little better today. All of her cultures have been negative so far so they decided to stop the Tamaflu and one of the antibiotics. She also had a bath today, and boy did she need it! She was one stinky little girl! During her bath, she decided she didn’t want her IV anymore and pulled it right out. The good news is that they started feeds so the doctors didn’t think it was necessary to put in another IV at this point! She is so much happier now that she can use both arms! They continue to try to wean her oxygen, but haven’t made a great deal of progress thus far. The GI doctor that Olivia was supposed to see today is hopefully just going to come up to see her since her clinic is just two floors away and Olivia was her last appointment of the day. They are working on getting the Family Care Conference set up, but it probably won’t happen for a couple of days. As long as it actually happens before we go home, we’ll be happy!

Holding Course

Nothing new to report here. Olivia is still on high flow at a pressure of 7 liters and 50% oxygen. If they can wean the oxygen down to about 30% and have her maintain that, then they will start to wean the pressure. They have had her oxygen down to 40% a couple of times, but then needed to increase it again. It's a SLOW process! They are treating her with two IV antibiotics, an IV steroid, tamaflu, and albuterol. That is on top of her regular medications. She is definitely not herself. She wants to be held all the time, her voice is very hoarse, and she is just generally irritable and uncomfortable. We won't hear anything about the family conference until tomorrow, when all the doctors are back from the weekend. The on-call pulmonologist said that she agreed that it was about time for a meeting to discuss these issues. She thought we had tried about everything she could think of. I will definitely post once we have more information or there are any other changes.

Really!?!

Here we are again! Sitting in the PICU at the Children's hospital with pneumonia! We are getting very frustrated! It seems like each time is worse than the last! Olivia came down with a cold overnight Wednesday night, which quickly developed into pneumonia by Friday afterrnoon! We took her to see her primary doctor who advised us that it would be in our best interest to take bring Olivia here. We were kind of thinking that, but we're really glad he sent us when he did. She quickly declined on the way here and got even worse after getting here. They have her on high flow, a mix of oxygen and room air forced in at a higher pressure. The pressure on that is 7 liters. Her normal oxygen is 0.3 liters. They also have her on some IV antibiotics and steroids, in addition to an albuterol nebulizer treatment. She finally seems to be sleeping, and will hopefully sleep well for a while.

We're getting very frustrated with spending so much time here. We have been trying to get a family conference, but it's been hard because they usually only do that for inpatient. So I guess that's a good thing coming out of this, now maybe we'll finally get our family conference. We just hope that will provide some answers to finally give Olivia some relief! I think that her vomiting, not eating, and respiratory issues are all related, but we need to get her doctors together to figure things out! We'll continue to keep you posted on how she's doing!

And I promise that crawling video once we're home and feeling better!

Summer Fun!

Sorry it’s been forever since I posted anything! We’ve really been enjoying our summer! We’ve celebrated both of my niece’s 2nd birthdays, went camping, went boating, and spent a lot of time with family and friends.

Olivia has been crawling all over lately. She spider crawls, on her hands and feet. It’s very cute! I am working on getting a video and promise to post it soon!

We’ve had lots of doctor appointments, mainly follow-up appointments. The most major one was with Dr. Pauli. He felt that things were going well. He is concerned about her back, but given her respiratory issues, it is impossible to brace her right now, so we’ll just have to wait. The only other concern he had was her reflux. We spent a good portion of the appointment discussing that.

Olivia is scheduled to see the GI doctor on July 27. We’re hoping to get some resolution at that point since the vomiting is now starting to damage her teeth.

Other than the vomiting, Olivia is very happy. She’s a very chatty little lady, although the only real words she says are mama and dada.

We hope everyone is enjoying your summer! We sure are!

Olivia's cousin Cora loves her!

Out boating! Olivia isn't sure what to think if it!

Cora will be such a great big sister!

Mamoo and her girls!

Chillin' with Great-Grandma Nelson!

Olivia was not a fan of the splash park!