FRUSTRATED!!!!!

I cannot even begin to describe how frustrated I am right now. After Hallie was in so much pain last week, I really started pushing the doctor to find answers. Friday, her central line stopped working, which meant that the home care nurse and I spent well over an hour trying to draw blood. We did everything from basically hanging her upside down to taking the dressing off to try and allow any kinks to work themselves out. Didn't work. Then, I had to take her to the lab to get her blood drawn with a poke. Not fun when I had promised her no more pokeys, but we had to have the lab work that day in order to get her next batch of TPN (nutrition) mixed up. After that, I was on the phone with the surgeon's office, trying to figure out what we needed to do. I ended up having to race to the hospital to meet the apointment they had set up for us with the radiologist. He injected dye and followed it through. Turned out she had a fibrin sheath over the end of the line. It's part of the body's natural clotting process. Hopefully, the contrast was thick enough to push it away and make it work normally. We will find out tomorrow morning when the nurse comes to draw more blood.

Monday morning I spent in the GI doctor's office. Good news is that Hallie gained a pound and grew 1/2", which is HUGE for her. Bad news is that things still aren't working well, so we finally started her on an antibiotic. Of course, the antibiotic can't be found at just any pharmacy and so we got to hunt all over to find it and head to south Reno to pick it up. I have noticed that she is less agitated and mean, but not a huge difference in her bowel movements. He also sent us to the hospital for an x-ray of her belly.

We got the results of the x-ray back today. It's not great news. Part of her large intestines appears to be dilated, which means that it is stretching out. So, we get to add another drug to her regimen to try and get things moving through better. It is a drug that has black label warnings from the FDA, so we have tried not to put her on it, but at this point, we HAVE to get things moving better, or we will end up back in Salt Lake for intestinal surgery. Some of the side effects include increased irritability, mood swings, lethargy, and muscle spasms/twitches. The problem is that they aren't sure if you stop taking the drug, that the side effects will go away. Hallie has been on this drug before when she was younger and we didn't see any of the side effects, but it is still a concern.

I've been in touch with her surgeon in Salt Lake and he wants a contrast study done again. That means a tube down her nose into her intestines so that they can put contrast in and follow it through to see exactly where it is stretched out and how extensive the damage is. Depending on what they find, it could mean more surgery for her.

I am so frustrated. Right now, she is on 8 different medications/nutritional supplements to try and get her intestines to function more efficiently. Despite all of this, they are still being damaged. It breaks my heart to see her suffering and to know where we are headed with this. She can't afford to lose much more of her intestines, so where does this put her? We are hoping and praying that the damage isn't that bad and that it will be able to repair itself, but things are not looking good. If she ends up losing more of her intestines, what are our options? I know a lot of that will depend on how much of it is damaged and where, but it is breaking my heart to think about her losing any more.

We are trying to make the best decisions for her, but it seems that despite everything we are doing, she is going to continue down this road. Is it time for us to start consulting with other children's hospitals about the possibility of her being a transplant candidate? If so, which ones are the best. San Francisco and Stamford both have great pediatric small bowel transplant programs, but so does Cincinnati, where my in-laws live. Am I willing to move out there in order to give her the best chance at survival? Is that where her best chance is? Or is it closer to home, where maybe we can do a lot of commuting. I'm not sure and I think that is part of what is weighing so heavily on me right now. There is so much to think about and so many different directions that we can take her right now, and for the most part, it is up to me to decide which ones to pursue.

We are going to wait and see what the contrast study shows. If it is something that needs to be surgically repaired, we will be heading to Salt Lake for surgery. If it is not, I want to start talking to both her GI doc and her surgeon and ask them to start researching which hospitals have the best program for her case. Regardless, we will probably be setting up a time that we can go to San Fran and meet with the doctors there. That would be my first choice since they are only about 3 1/2 hours away. I have a great aunt that lives there as well, so I would not be totally on my own in a strange city. I just really feel like the time has come that we need to start exploring our long term options with her. Even if she is not a transplant candidate at this point, we need to look at where she is heading and what we need to do to take care of her.