|So, Carla has been desatting a little bit throughout the night. So, now they have her hi flow turned up to 40 liters, on 50%. The problem, as I see it, is this. 1) if she turns on to her right side her O2 levels go down; 2) If she is sleeping, her O2 levels go down; 3) if she needs blood, her O2 levels go down; 4) if she has a fever, her O2 levels go down....So, this process is just going to take a little time. She is still coughing up some blood out of her lungs (as of yesterday afternoon). So, her lungs are still in a very delicate state. I know she freaks people out when she starts satting consistently in the low 70s, but she's fine. The goofy thing about the hi-flow system is that the air blows so hard that half of it comes right out! And, the cannula is bendy....as to not break down the nasal passageways, so half the time the dumb thing is kinked off. So, 40 liters kinked off, what does that measure? They may decide to put her on BiPap as she sleeps...we will just see. Of course the big worry is the Plastic Bronchitis...will it come back? I certainly hope not and I REALLY don't think so. But, only time will tell. I'm not going to worry about things that aren't a problem now and may never be. |
All in all though, even with the desatting issue, Carla is doing great. Last week at this time she was on the vent. Now, she is not. We are on the road to recovery. And, it may not be as fast as we want it to be. But, she is still recovering and that's all that matters. Yesterday, for the first time, she told me she loved me. Do you have any idea how amazing it was to hear those words? So many times in the first week we were here, we thought we were losing her. And now, she is waking up, acting like herself, being silly, demanding, snuggly, adorable and telling us she loves us. Four times in three days we almost lost her that first week. Four times in three days. I wasn't even sure we were doing the right thing by continuing to keep her alive when her body was failing her so. But, we stayed the course and we prayed and prayed and pleaded with the Lord to hold her in His healing hands and help her get better. Of course there was also worry of brain damage, after desatting so many times. But, she is clearly still "Carla" and we are so, so very thankful. This healing she has done has been nothing short of a miracle. We pray for continued healing and to come home soon so that we can wait for her antigens to come down and then bring her back after a period of time and re-list her when her body is in a safer place. Getting a heart while she is healthy would be a much better circumstance. So, we just need to get her to that point.
The doctors just did rounds and they are going to start weaning the liters of oxygen down again. So, that is good news. We will see how she tolerates it. They wondered why she was still sleeping and I reminded them that she took a 5 hour nap yesterday and so was up until 1a.m. last night! Silly little Toot! I think she's on her Dad's schedule now! Bobby said that after he read her a book, sang her a song and said her prayers, like at home, she finally went to sleep last night. I'm glad he was here with her. Whenever she wakes up the first thing she does is look over to where we normally sit, to make sure she is not alone. Because we want to make sure someone is always here with her, Bobby has been staying up every night and sleeping during the day. The idea is to minimize any fear of abandonment she may feel if she were all alone here. Four years old and all alone in the hospital is scary. We don't want her to be afraid. Also, it is very important to play an active role in her recovery, and if one of us is always here, we know what is going on with her care and can be the best advocates for her that we can be.
Anyway, I'm getting a bit chatty here. Love you all! Jen