Wednesday, June 13, 2012

Wanting to be positive...

I have sat down at my computer to write a post many times. It drives me crazy when I am reading a blog and then there is no post for quite a while. After a while I stop coming to read assuming there are no new entries.
I keep thinking if I have nothing uplifting or positive I need not write. But tonight I come (again) asking for prayers. Tomorrow we see our urologist whom we haven't seen in a while. Of course this doesn't mean Annabel has been free of infection, as she is on antibiotic most of the time. For some reason Dr. J seems to just become frustrated with the fact that we have to treat her UTI's  due to the risk of the bacteria migrating and infecting her line. His answer is to just pull the line and remove her of TPN. I so wish I could do this. We have tried twice since Christmas but with no luck.  But we will see him anyway as she need to have a CMG.
Annabel has become very uncomfortable as of late. These episodes are happening more often. Some of them are fairly severe. They do pass sometimes taking days to actually resolve. When we saw her surgeon in late April his reply was until you remove her large intestine she will never eat again. He says her large intestine is acting as a brick wall and therefore won't allow the small intestine to empty. He has reviewed all her scans, xrays etc. and he has actually been in to remove or resect parts of her bowel before. The GI doctor wanted to try one more regime of medicines to see if something would increase her motility. He says it was his last shot and then if nothing worked the surgery would be the option. About 10 days ago she had a terrible weekend with so much pain. Lasting longer than others previously. She did end up in our local hospital. The cat scan revealed megacolon again, last episode was in April when she was flown to Houston and it resolved soon after arriving. There are many terms that are thrown out there each time, like obstruction, psuedo-obstruction, ileus, toxic megacolon/functional megacolon, twisted bowels etc. For the last few months Annabel was considered to be on total gut rest, except for the fact that we were giving her very small amounts of water in her g-tube for added hydration. Now she can't have anything in her gut until she has surgery.  So since this last hospitalization Annabel has continued to have a very big belly most of the time and higher heart rates while sleeping. She also winces in her sleep as her heart rate is rising and I know she is very uncomfortable. She is tired much of the time. She still has happy time but they are less and farther apart. Annabel has begun to pull at her hair much of the day, rings her hands sometimes until they bleed and the grinding is much more and harder these days.
So tomorrow we will see our surgeon as our GI doctor says it is time. I know she needs some relief, I was asking for some meds to make her more comfortable and of course the answer was if she needs pain meds we need to bring her into the hospital (last night) and schedule surgery right away. This is where I ask for prayer. I have always wanted to make the best decisions for Bella and so far I think I have. I have always said that I don't want to just begin cutting away on her and that when enough is enough I will know.
They question with the surgery we are facing is the large intestine will come out. But the surgeon is honest and says I can't guarantee I won't be back in for the small intestine. There is test that show that things are getting worse there also. My goal for Annabel is to eat again. TPN is not good or kind to Annabel's liver. That is why we consider removing the large intestine because it is a chance to feed her again. Once we remove the small it becomes a different game.
The above writing probably is very confusing, as to when I think about it I know I am totally confused. I do know that she will have a bag on one side when they remove the large intestine. I think ahead and worry about skin breakdowns as this can be very scary with her central lines.
What I will be asking for tomorrow is to make Annabel more comfortable through medications. I want more time to think of the procedures/research and weigh out the risk/benefit of the surgery. I sure don't want to see her suffer, ever but I also want clarity in making the best choice for Annabel. I trust the surgeon completely and he is a very kind man.
Thank you so much for your prayers....