Today my mom, Jilli and I headed to Children's for a weight check.
This morning Jillian started peeing again. Her pee is still down, but it is improving. She also pooped green liquid again this morning. Her temp has been varying between normal and upper/mid 99's today. She has needed a couple of nebs today because of odd breath patters, coughing and exhaustion.
Well we got to Children's and suddenly our sick child decided she needed to be a clown. She LOVES the GI clinic at Children's. It is rather crazy how goofy she gets there because she loves them so much.
We weighted Jillian.
She was around 9.6kg (under the 5th percentile for her age) and her height is the same (she is around the 5th percentile for age there too...) Her weight for her height is in the 50th percentile which is why she does not look as small as she is, however in shorts she still wears a 6 or 9 mo. She is wearing the same clothes this fall that she did last fall, and in reality they are bigger on her this year then they were last year! I told the dietitian that Jillian has lots of cute 18mo clothes that still have tags on them that she needs to grow into :)
After some talking we decided that the best plan was to try to slowly bump her up to 62ml/hr (she is currently at 58ml/hr). We have tried to bump her up before however that was on her old pump. The new pump that she has seams to run slower then her last pump (the pumps has an allowable 7% margin of error). We believe her last pump ran fast and her new pump runs slow. Her new pump is about half an ml under for every 10ml. We are thinking that bumping her up to 62ml should hopefully not be too hard since we should just be bringing her up to what her old pump was running at. Hopefully.
While we were there the dietitian asked about our ER visit the day before. We said it was kinda pointless (did I mention that the ER doctor wanted to feed her orally?!?!?!). She said that she would see if any of the GI nurses we around to take a listen to Jillian's lungs to see how they were doing today.
Our favorite GI nurse came in (the one who sent us to the ER yesterday) and listened to her lungs. She said they sounded ok. This is when Jillian turned into a ham! She LOVES our GI nurse A LOT. She got silly then and seamed like her normal self. I am glad she likes to be at Children's. It would really suck if she hated it there. I love that she is so loved in GI, however when she turns on the charm like this when she is sick it frustrates the crap out of me. Partially because they then don't see what life is like at home as she is puking and not breathing and it sucks. I worry that they wont believe me when I tell them about her being sick. But the biggest part is because I know when she turns on the charm for a little bit, she will pay later. She only has a finite amount of energy and when she expels a lot of it at one time I know the crash will be hard.
So as we got in the car the cough started again. As we drove she looked exhausted. As we got home her breathing became more work. Within a while of being home she needed another neb. After dinner her temp was back up to 99.5.
I wish someone could explain to me why her body just shuts down like this. Her GI system stops working correctly from top to bottom. It then causes her lungs to be compromised and frequently ends up in aspiration which then sometimes ends in pneumonia. We watch this cycle over and over and all we can do is watch and help her deal with the symptoms as much as we can. We fight all that we can for her. We sit in ER rooms for hours and have pointless conversations some days with the hopes that one of these times there will be an ah-ha moment. We just keep fighting for her whether people think we are crazy or not. Sometimes I just wish her doctors had to sit at night with her as she coughs. I wish they got what it was like to be in our shoes, but then I don't, because I would not want to do that to anyone. Not that I dislike my life. I LOVE my life. I LOVE my daughter. I am SO grateful God gave her to me. I have the BEST little girl in the world (I know I am a little basis) But it is hard to watch your kid struggle to breath. God gave us this little girl for a reason. God has a plan for her. So our job is to help her on this journey. We will keep fighting for her. Hopefully this round of GI shut down ends soon. Another will come and we will help her with that one too, because we love her more then we can even fathom.
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