The last few days have been her best in a while. She has run a low grade fever almost daily since she was release from the hospital. Even though she now has a respiratory infection, I still consider the last few days her best. She has been able to stay on her formula feedings longer periods of time with less distention and retching. She has been sleeping better since Saturday night and I am so grateful.
Today was our GI appointment follow up to receive the results from all the testing when she was hospitalized. Since Annabel was placed on the TPN/Lipids she has gained 2 lbs. in one month. You can visibly see the weight coming on so quickly. They will adjust her TPN (20%sugar) and lower her Lipids (fat). It is too much weight to quick. So when the doctor walked in he looked at Annabel and we said the hellos, then he asked did you get the motility study when you were in the hospital. For all those that don't know this was the reason for the appointment. I could feel my face burning up. My sweet nurse said your faced turned so red. I have driven 2 hours to these appts. too many time for nothing. I was furious as I had called last Tuesday and was told the results would be in the GI's hands in 2 days. So 1 week later and he doesn't even know they have been done. Just plain crazy. Maybe with my age I just don't want to play their game any more. So with no results basically except for what we know about the dismotility we are to try to get her amounts up with feedings so we can decrease the TPN/Lipids. She has been on five mls. since the hospital. We did go up to 6 in the last 24 hours and will continue to try to go up 1 ml. per day. When she was in the hospital her liver functions were normal but the last two weeks have already begun to show an increase. TPN/Lipids can destroy your liver long term. This is something we are paying attention to since her liver has not been an issue. The GI dr. is suppose to get with the motility doctor who did all the testing and call us soon. I will try to get more pictures and write when I have clarification of what is really going on.
I do have a very sweet nurse named Rebekah that comes 3 days weekly. I am praying for at least one more, but her other families don't want to give her up. Friday night I will have a nurse that will come in 12hrs. during the night (3 nights) so that I can get my rest. I am trying my best to learn TPN and central line but I am quite nervous. But I do know I can do this, so hopefully by the weekend I will be doing this.
I am so sorry my writing is so boring and lacks any information. Annabel continues to be the joy of so many peoples lives. She has days she is incredibly tired but she still shine her sweet light and makes everyone smile.
This is Annabel with her sweet nurse Rebekah. We have been blessed with her for the last two weeks. She is so careful with all of Annabel's needs. She loves to bathe her, dress her and make sure she is always matching with her bow and most of the time even her Coban wrap on her central line. I am so thankful for her positive outlook and the can do attitude about everything. She is a hard worker and is with us several days a week fro 12 hrs. days. I am praying that she is able to stay with us for a good long time. My back is all the better for having her.
