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 suzyque92@hotmail.com

Go Texas A & M

Annabel dresses in honor of her two sister today, Carly and Colette...I love you and miss you bunches, Annabel...

Ramblings....

I can't even think of a title for this post. That is what my brain feels like, no complete thoughts...To begin, Mallorie's funeral was beautiful. To all of you families who have given your babies over to be with Jesus, I have to say that I can't begin to know how you felt. Watching Connie and John and their beautiful children do this on Friday was more than I was prepared to do. The funeral was held in our Cathedral which is such a beautiful, historical church. The music was just right and the many priest and the wonderful talk by Fr. Jamail. But I was not prepared for the tiny white casket that was wheeled to the front. We all know where Mallorie is, I don't question that at all. I also witnessed Dr. B(her pediatrician and Tracy(her nurse of many years) lay the pall over the casket. What courage and strength that took. The way Mallorie's life played out left not a doubt in my mind that God brought her here and He took her home. Mallorie's life taught us what perfection and unconditional love was all about. Also, Katha and Vic Nelson gave a wonderful reception with food and a place for friends to gather. So today I think of Mallorie and all of the other families who I have met through this blog whose babies are resting in the arms of Jesus.

I finally took the pictures with Annabel and her two other nurses. Rebekah is still with us 3 days a week and Debbie is with us the other three days. Ashaunti is our night nurse and comes three nights a week so I can just....hummmmm...do nothing if I want! It is so good to know that I can sleep straight through without waking. I have to say I love all of my nurses and feel I can leave Annabel with them and not worry at all. I feel like they tend to her medical needs as well as just spoiling her rotten. She still goes to school if she is well and the nurses attend with her.

This week Annabel had day surgery in Houston. She has had a fatty growth on the back of her right ear since I can remember. It has begun to grown this past year and at times become irritated and red. With the oxygen tubing and her sunglasses it was becoming more irritated. So when her GI doctor said he wanted to put her to sleep for more biopsies, I quickly made an appt. for the surgeon and it was scheduled. She did great and came home the same day. She stayed home and returned to school this morning.

One of the pictures is of the twins with their friends. Mel and I went up to visit with them the weekend of Mallorie's passing. We took them to dinner and had so many laughs. They seem to love everything about College Station and Texas A&M. They are so lucky that they love their two roommates and enjoy doing things together. Our home is so different with them gone. This may sound crazy but I wish I could hear the back door slam when they came in from school, also that I could fuss and tell them again, please bring down your dirty clothes for the 100th times...They came home this weekend and I wish I could have caught Annabel's reaction when she saw them for the first time since Aug. 20th. It was priceless....

Yesterday we went to visit with two very special people. Loma and Lanny who have been a foster family with our agency for several years. During Annabel's first year when I thought I couldn't do it any longer they would step in and help me out. When she became so sick this is who I would call and they would come drive me to the doctor and relieve me at the hospital. Their pastor, Rick, never fails to visit Annabel when she is ill in the hospital. So yesterday was 7 years that their church has been together. Their whole congregation prays for Annabel and it was obvious when we entered the door of this most welcoming church. Christian Fellowship is truly doing God's work here on earth and I am so touched and thankful for this church family. Also, to Loma and Lanny who have loved Annabel and myself so much...

One of the pictures of Annabel is in her gait trainer. She isn't standing all of the time but more and more she raises herself to a standing position and propels herself around the room. I love the freedom that this allows her be upright.

The picture of Annabel in her stander could be titled "you've got mail". It is from Tehya, Sage and her mommy, Janet who send her cards. She loves to see the pictures and look at the cards. Thank you so much for thinking about her. You can see she loves them.

Annabel continues to be totally TPN/Lipids and is gaining weight rapidly. I will call and complain today and hope that this will get cut back and the weight won't coming on so fast. When the biopsies return hopefully this week I will get aggressive about what is the actual reason Annabel can't take anything into her tummy. Thank you to all for keeping Connie's family in your prayers and to all others also who are waiting for transplants, uncontrolled seizures...