Long awaited appointment...

Yesterday was the day for our long awaited GI appointment. The doctor we saw yesterday had accepted us as his patient (we are so thankful). He is the one who actually did her motility studies in the hospital in May/June.

I will attempt to explain in layman's terms as was explain to us. What normally takes place on a person when there isn't a motililty issue is that the body does a chomping motion that chomps the food and moves it through your system. In Annabel's case this doesn't happen. It is due to a few things, not all totally clear yet. Her biggest issue is that in her system she has such poor muscle tone. In many of her areas she has retrograde activity when things move backwards and not forward. With the combination of the poor muscle tone not moving things much at all and the fact that they want to go backwards seems to be causing so much of the problem.

As of next week we will remove her G-button and replace with a GJ button and she will again be fed through her J port and then she will be vented through her G button. She will not come off the TPN as I had hoped and he cannot say at this time if she will become TPN dependant. We are looking at a couple things as far as more testing. They will be doing more enzyme testing, also another endoscope for more biopsies. We are also considering a port being placed at this time to allow us more freedom for Annabel to get into the pool for her therapy. Dr. C was very open to the possiblilty of upping her dose of TPN and just giving it 12 hrs. nightly. Overall, they aren't upping her dose but they would recalculate what she was getting in the 24/hr or 18 hrs/ infusions and give it during 12 hrs. while sleeping. He listened/explained so intently which we haven't always had concerning her GI. He also wants to see her back in a month so he can get to know Annabel and how she works better. Boy, how we don't hear that very often. There are some medication changes that we are going to begin. Everything right now will be trial and error trying to see if we can induce motility on our own. Her intake into her belly is only 20mls/hr. We are trying to keep something going into her stomach as we know that is what is best if possible. Due to much of this she is still said to have psuedo-obstruction. It is just what takes place when there is no/very little motility.

This probably sounds like not much to have waited for, but there is more to it (just can't explain). Also, we do have a plan of care and that is really all we need to know that someone is caring for her and trying to help us understand what is taking place in her little sweet body!

I have added a couple more pictures. One is with Annabel and her brother Derek when he came to visit. She loves when her brothers and sisters surprise her in the evening with visits. Also the next one is of Derek and Linzy after going out to eat with their moms. Cindy (Linzy's mom is so fun to hang out with!) We had been to their church with Derek and Linzy and heard a very dynamic speaker.

My Chunky Monkey...

I continue to be blessed with good nursing help. This is the longest Annabel has stayed infection free from UTI's or anything associated with her line. This is the good part of the ride and I am trying to focus on this.

As I said I am trying to focus on this, focus the operative word here. The TPN/Lipids makes me so uncomfortable. Her liver is one thing she had on her side at this point. At this point her liver doesn't seem to like the TPN/Lipid mixtures. They keep making adjustments and Annabel keeps gaining the weight. Early in 2010 Annabel still wore a t 24mths. and 2T. I am now buying her 4/4T and having to look at 5's for the winter. I think if we can stabilize her weight she would be a solid 4T. Somedays her weight is heavy for her and you can see it in how she breathes. She still continues to be anemic but I can see a pattern that hopefully this will get better soon. At this point she seems very strong and wants to try to stand much of the time. She received her hot pink gait trainer on Friday and today we had lots of forward movement. She seems to enjoy the freedom she has in being upright and mobile.

We saw urology on Wednesday of this past week. I am so lucky to be with Dr. J. After two other urologist I feel we deserve a good one. Her last dilation was in mid-May. So we got a good 5 weeks before we noticed a decrease (better than the first one which began to close after 3 weeks) and now we are having to cath her 3 times daily. When school starts we will have to increase to 4 times daily. Her residuals were getting up in the 200's after she wet her diaper. It is so hard to tell the distention from the small amount of formula being place in her tummy or if her bladder is so full.

Annabel is on 50% TPN and 50% Peptimun Jr. We are pushing the formula in the hopes that she will one day get off the TPN. Her tummy did ok until we hit 18 mls./hr and now at 22mls./hr she doesn't seem to be able to stay on her feedings. We will meet with GI dr. on Wednesday of next week and hope to have a game plan about why she just can tolerate more in her belly. She is averaging less than one BM a week with Miralax. They have explain that she has pseudo-obstruction and this seems to be what is happening. Her gut thinks there is an obstruction and therefore everything backs up, with very little getting out until the dam breaks loose. Today was one of those days and with the pain/movement/noise in her gut it make sense.

So with our vacation behind us, wedding postponed, soldier home safely, and twins getting ready to move into the dorms I am thankful for the help of my nurses. By next week they will be here most everyday from 7a.m.-7p.m. and then at least 3 nights, sometimes 4 nights we have a sweet nurse who watches over Annabel and her monitors and I sleep soundly. It is good to know when I hit the pillow that I don't have to wake until 7 the next morning. So what I can't figure out is with all this help, why I still feel a little down. Sometimes, I really feel that my time with Carly and Colette (twins) is over and I should have spent so much more time with them and not have been so critical/tired or short tempered. Also, it is my thinking that I heap all this guilt upon myself because I feel for the first time that I really, really can't do this alone any longer. I don't know if it is the added weight/size or the TPN or the decisions I feel I need to make about how to proceed with the TPN. I know what I will hear from the GI is that she needs this now and that it will be ok for a little while but urology has a different view. Urology does believe that the TPN has given her great hydration and wonderful nutrition but believes we have to look at what is happening to the liver. He says that if we come off and she get more UTI's again then that is a better option to deal with infection than liver damage. I absolutely agree with him even though UTI's aren't fun it is better than the other outcome. Yes, I have heard how some people can live on TPN for many years but Annabel doesn't seem to be one of those people.

Sorry the post is so long! While I am so thankful and grateful for the help of our nurses, the doctors helping guide us, my son being home, all my kids are close for now and I will enjoy for about another 10 days.

My prayers is that the twins will enjoy this season of their lives, they will make wise/safe/smart decisions and feel successful in this college experience. That Derek and Linzy will grown their relationship and future together. Tara will continue to love her job, enjoy her new home. Tyler will go back to college and begin his career, hopefully close to home. Also, that whatever decisions are made medically for Annabel I will feel at peace with them.

I am sorry I haven't been writing back as much but I do read the comments/email and text messages. I have discontinued my facebook for now until I can manage my time better. Thank you to all for your prayers!

He Is Back....

These are pictures from Tyler's return. We went to Houston yesterday to see the soldier's being escorted in by police motorcade. Tyler was on the second plane to arrive so this happened around 3 p.m. It was much too hot so Annabel was not able to make the trip with us, but Mel and I, along with Carly and Colette we able to see him arrive. I can't begin to tell you how good that hug felt knowing that I would not be telling him bye again, at least for a while. His unit has 120 soldiers and they were all treated free to dinner at Golden Coral. It was so emotional seeing them all enter and the customers and workers cheering for them. We stayed the night since this morning their was a program to welcome them home with speakers and a luncheon.

The following pictures of Tyler's homecoming to Annabel. I think the words will say it all...there wasn't a doubt in my mind that she remembered who he was and I think it warmed his heart also. I asked him the first three things he wanted to do when he returned and number one was to see Annabel, then his dog and after this his bike!