On our way....

Juliana is fabulous. She is very happy and back to herself. It's hard to believe that she was just on ECMO a couple of weeks ago. She was extubated a couple of days ago and should be on nasal cannula by tomorrow. She is currently on high flow at 3 liters and if all goes well we will be moved to the floor in the next couple of days. Of course I argue that if she is well enough to go the floor then she is well enough to go home. Once she is on nasal cannula there isn't anything that we don't do or can't do at home.

So my goal for the next few days is to break Juliana out of the hospital. I have had enough of the hospital and it's not that I don't appreciate them saving Juliana's life again. It's just that she has spent more of her life in the hospital than at home. I also have big trust issues. It really takes time for me to feel comfortable with the staff at any hospital. Moving her to the floor would just mean more staff that I have to train. I think when you are the parent of a very sick kid you have a different view of the world. I am the biggest advocate for my daughter and I will protect her at all costs. Sometimes it means typing out instructions for her care and posting them over her bed, talking with the nurse managers about what I expect from the nurses and badgering the doctors to answer questions about why, what, when and what if. I just can't sit back and let them handle everything. I have to be involved in everything from the smallest change to the biggest and if something slips by me like a change in medication my anxiety goes way up. I just might go crazy if we don't get out of here soon.

While inpatient at the hospital we were able to get a few things done. She was due for her eye exam while she was on ECMO, so I wasn't quite able to bring her in for her check up. I finally was able to arrange for the retina specialist to come see her while in the hospital. So she had her exam yesterday and the traction on the right retina is gone. We are scheduling a visit with a pediatric opthamologist because she will most likely be nearsighted and will need some vision correction. The retina specialist also recommended that Juliana be fitted for a special contact that will trick the orbital bones around the left eye to continue to grow. Since she has no vision in the left eye, the eye most likely will not grow and therefore the bones around the eye will not grow. Although this is only a cosmetic issue I think if it's something we can fix we might as well. Today she should be seen by audiology again. Now that she is extubated they will be able to test her more accurately. Initially they had found that there was some high frequency hearing loss on the left but the test was inconclusive because there was not enough data to compare. I am hopeful that the initial thoughts were inaccurate. Despite everything she is happy and smiling and charming the pants off everyone who sees her. Mama is so proud of her little girl.