Monday, October 18, 2010

Needing your input....

Beginning of Annabel's week...

Ending of Annabel's week...

So many times when we have unanswered questions the first place I come is to the blog. I have asked many times in the last few years if you out there have experienced any of what we may be going through. So many times we have found answers from others. Once again I am coming and asking you of your personal experiences.
Let me remind everyone that I have no medical experience except from personal encounters with Annabel. I truly don't understand all that the doctors say. I try not to dwell on the what if, or that this maybe what is happening. Only because my mind doesn't understand or can't comprehend that much information. I also try to put some positive with the negative.
This past week we could see changes in Annabel. Some days were great and some she was just plain tired/weak. I will back up and say that Annabel has been on TPN/Lipids since May. We have tried formulas for feeding. We have also tried to use her GJ button but that was found to not work properly after four different attempts. It just shot back up into her stomach with either the pressure/retrograde activity, but this wasn't an option any longer. I can't say enough that I want her off this TPN as I know with time this is not what is good for Annabel. At one point prior to all this her liver wasn't an issue. The only two things that are positive about the TPN/Lipids is that it gives her proper nutrition and great hydration. Hydration is major with all her urinary issues.
Through two different sets of biopsies they have found that Annabel has deficiencies in all diasacharides. (Sorry for the spelling errors) They are struggling to find something that Annabel can take. We thought they had found something RCF (Ross Carbohydrate Free) formula that we had to mix. We began her at 5ml. then progressed to 10mls. By Monday she was vomiting and wasn't feeling well at all. So we had to pull her from this formula. These formulas have to be
mixed with some form of sugar and they can't find that she can tolerate. So that leaves us basically TPN/Lipid dependant for now. So as I am trying to accept this her GI dr. calls this past Wednesday and says her liver ALT, AST are 690/400's. She has run high before but not over 200. So the doctor was concerned as to what we should do with her. I suggested repeating her liver enzymes to see if this could be lab error. He agreed but this was not so. Also earlier in the week we began to suspect Annabel had a UTI. (For all you faithful readers, I bet you were enjoying me not whining about her continuous UTI's) So Dr. B cultures it and it came back Thursday with a very high count and Houston says we need to be inpatient. So they put her in the hospital. To me she didn't look sick enough to be admitted but with the central line and the gram negative bacteria and throw in her high levels in her liver we agreed. All this said was everyone worked together to get full time nursing in place. Also our wonderful company Coram who supplies the TPN/Lipids was able to get us her IV antibiotic to our door Saturday morning and we were allowed to continue this treatment at home.
So after all this rambling I was wanting to know if anyone had they liver experiences and what it all meant, what treatment,etc. was used. I realize that some children are placed on TPN/Lipids while awaiting liver transplants, but this isn't an option for sweet Annabel due to her Trisomy 18 diagnosis. Her levels after 6 days are in the 400/upper 100's. The first numbers being ALT and the second AST. Hoping that they will continue to come back down. I understand how busy everyone is with a sick/special needs child. If you have anytime to write about your personal experiences I would appreciate it so much. Also, if you prefer to email, my address is