I have been going back to read post from when she was younger. I love reading those post when for days at a time I could be positive. I could post pictures where Annabel was in therapy and making great strides. She was communicating, standing and making good progress. This blog was to sharing what a blessing Annabel is, to gain information medically and to continue to give hope to others on this Trisomy 18 journey. Reading as of late, I try to find where this blog is going.
My biggest wish is for Annabel to eat again. Not necessarily by mouth but at least g-tube. I was told that TPN was the most proper perfect nutrition that humans could ever have. Blood is drawn weekly and her TPN is mixed for that week. Yes, she has gained weight! She is at her highest weight ever at 34 lbs. For those who don't know, trisomy 18 children are small children. At this point Annabel is needing 2 lts. of oxygen all night and even during the day. She does have a cold and we thought this could be the added need but really her tummy is so huge and with such a small capacity for her lungs that the tummy compresses on her lungs. Therefore, she is so tired just trying to breathe. She has regressed as to not even wanting to sit up.
As much as I would like to remove her from TPN it just isn't possible. Basically, she would starve to death. She cannot take enough in to survive and with her tummy not working it is impossible. We are going to GI tomorrow for our monthly appointment. We love Dr. C and he want to work so hard to figure Annabel out. They have agreed she is one of the most complex children he has. Her liver also doesn't like the TPN and it shows in her values and I wonder how much she feels. Of course she can't tell us. Just an example, I wanted to bring her to church yesterday and she was very uncomfortable sitting up. I moved to our cry room so she could lay on the pew. When I looked down I could tell she was more comfortable laying down but there were tears rolling down her checks and yet she smiled when I looked at her. I wish she could tell me what hurts.
I want to come to you with just the positives...like when she got her blood transfusions almost 3 weeks ago, she has not looked ashen or gray even once! We are grateful. We learned that Annabel probably needs to be transfused around 8.2. The protocol at the hospital is 8.0 but as Dr. C says with Annabel we just can't wait. We waited several weeks and that is when we noticed so much her paleness or ashen color many times a day.
Another positive is that Annabel has been free of IV antibiotic for over 2 weeks. This means no UTI or central line infection. I am so happy for these accomplishments. We are struggling with her central line. This past Friday she had her second blood clot in the line. We spent most of the day Friday in our local hospital dissolving the clot. One of the positives it that normally they don't do central lines locally but they made an exception for us and this saved us a 3 hour drive to Houston. It also gives us hope that if it happens again (it already is not wanting to draw back)we will be able to stay locally and take care of this issue. So for this we are grateful!
Annabel continues to be the sweet child, with a huge beautiful smile. She is the toughest little girl I know. Each and every time I look into her eyes, without a doubt I know there is a mighty God. Everyday, without a doubt I know that we are blessed to know Annabel. I continue to be so thankful for my family and everyone who is part of Annabel's life. Her care has become so much more than before and I have had to realize that I can't do it all by myself any longer. PLEASE, continue to pray that they find out how to help Annabel the best. To locate the cause of the issues with her blood, her tummy and the pain she seems to experience in her bone/muscular area. Prayers that she will stay infection free.