Day 122 - Camera Time

Ava's gas was 68 this morning, and was 58 this evening. They put her peep up to 9. She was in about 70-85% O2 all day. Tonight she is up to 70%. I went in this morning at 7am for her procedure at 7:30am but because we were delayed due to figuring out what to do with her Nitric Oxide, (which they usually only have to deal with the vent) we ended being put to later in the day. We were told around noon, so I waited around all day, and they got to us around 3pm. My poor honey hadn't eaten since midnight the night before. She did get some sugar water to keep her sugars up in her body.

Today was a big step to bring Ava home. The doctor examined Ava with a camera that went down her throat past her vocal cords and into the top of her lungs. He didn't find anything wrong with her vocal cords. What he did find was that her left lung is collapsed, meaning it needs pressure support of the vent to keep it open. When they take the support off of it, it collapses, when they put it back on, the lung opens. He also wants to get a cat scan to make sure there isn't anything underneath her lung pushing it to collapse. We are hopefully going to get the scan this week, but it depends if they are able to get the scan when she is on Nitric Oxide. If there is something pushing on her lung like her heart, then she will need to have surgery for it.

Finding the lung collapsed is both bad news and good news, because now we know why she is having so much trouble and can't get off the ventilator. The bad news is that this means she will probably need to be ventilated for more than a year with a trach. We were only hoping for a few months, but it could mean up to 2 years, it all depends on this lung strengthening and growing strong.

Once, the cat scan is taken and the results are seen, we will then move ahead with the trach. After the trach is in, and the vent settings are stable for two weeks, we can then start looking into getting nursing at home. From what I know, that takes around a month to get the nurses established, and then we can take her home. I don't know if we will get round the clock nursing, but we do get at least 12 hours a day. It's up to a lot of different things like our insurance, our job status, etc. Hopefully her vent settings will dramatically drop due to the trach, because there is less space for the tube to effectively aerate the lungs. The other good news that hopefully is possible, is that after the trach is established they will try to bottle feed, and if that works, I can try to breast feed, which I have been hoping to do since the day I found I was pregnant with Ava. If we can't get her to bottle feed, then they will move to put a "g-tube" into her stomach where we will pour breast milk into tube that goes to her stomach. We will definitely be having some new info once I start learning all about our options.

Ava weighs 7 lbs 10 oz. She had a huge increase so we will see tomorrow if she had a lot of fluid or was it really a good gain.

Either way, God is working to get Ava home to us! Thank you Lord! Thank you for giving me the sense at 6 weeks that Ava was going to be a living part of our lives and to fight for her.

Praying for Ava to be able to bottle/breast feed and get her beautiful self home to our family...