Yesterdays appointment went about like I had a feeling it would. We met with Hallies surgeon, surgery nurse practitioner, GI, GI nurse practitioner, palliative nurse, and palliative doctor. We were there for close to 2 hours going over everything. We are going to try a new medicine called Pentasa. It is an anti-inflammatory used to treat ulcerative collitis, although not commonly in children. The hope is that it will help control the inflammation that happens when her ulcer flares. We are going to give it 1 month to work. If we dont see a significant improvement in the amount of blood coming out, we will schedule a bowel resection. The risk of leaving Hallies ulcer(s) in is that they can eat through the wall of her intestines. She has had at least 1 ulcer for 2 years now. The longer it continues, the higher the risk. We have also seen an increasing amount of blood. It is happening more frequently and in larger amounts. Her heart rate soars and her blood pressure drops after a bleed. It wouldnt take much for her to have a large bleed that would put her life in immediate danger. So as much as I have fought to avoid this, we have exhausted all of our medical options and my sweet girl will be going back into the operating room for major surgery. The Pentasa is a last ditch effort to avoid it, but they arent extremely hopeful. This will be Hallies 4th bowel resection, 5th bowel surgery, and 6th time opening up her abdomen. There is so much scar tissue in there. Imagine every time they go in, somebody chewing up a bunch of gum and spitting it in there. Thats the scar tissue. At first, it is very sticky and soft. After about 8 weeks, it sets up into a hard, almost cement like state. Each time they go in, they remove as much of the scar tissue as possible, but she still has a lot of scar tissue. The more they have to go in there, the riskier each surgery gets. The surgeon told us that it will be a long, risky surgery. He has to navigate through all of that scar tissue to even get to her bowels and try not to nick or tear anything he shouldnt in the process. From her scopes, they know exactly where her ulcer is in cm so once they get to her intestines, they will cut them apart at that distance. Once they are separated in the middle, he will run a scope back up through the restructured portion of her intestines that they cant get to with a normal scope. If they find multiple ulcers, they will have to remove each section they are in, so there is the potential of multiple resections being done. If there are no complications, she will be in the hospital for 1-2 weeks. She wont be able to eat for days until her bowels recover and start functioning again. Depending on how much of her bowel that she loses, it could take months or years to figure out how to handle how much food she needs eat. She was on TPN (IV nutrition) for 2 years after her last resection. She could eat, but her bowels couldnt tolerate enough to process all of her food without shutting down. It will take her 1-2 months to gain back strength in her trunk. Those muscles have now been cut apart 5 going on 6 times and get weaker after every time. She will likely walk hunched over for awhile because she just wont have the strength to stand up straight. And this is the non-complicated version. The complicated version is my nightmare. Hallie knows she is most likely going to have surgery. She likes the idea of getting rid of this stupid ulcer. Shes a little scared which will probably get worse as we get closer to the resection. Her biggest concern is that she is going to miss out on summer. Summer is her best time of year usually. The nasty viruses are quieter, as is her asthma and arthritis. She doesnt have to worry about going to school. She can just play to her hearts content. We dont even have anything really planned for the summer other than her going to camp the last week of July. She just doesnt want to miss out on all of the playing and feeling good. There are several things that we need to do to get her ready for surgery. I need to meet with several of her other doctors and make sure she is in the best place possible healthwise before we put her through this trauma. We walked out with a stack of orders for labs and x-rays and tests. If all goes like they think it will, we will do the surgery as soon as she gets out of school. My heart is breaking. I feel sick to my stomach. Her surgeon looked like he wanted to cry with me. Life is not fair but especially so for these kids that have to suffer like Hallie does. I can only pray that we can get her to a point where she can remember what its like to not live in daily pain, to have a good entire day. We just had a mountain placed in front of us and right now, it feels pretty overwhelming, mostly because we have climbed this mountain several times and know how hard it can be.
Posted on: Wed, 23 Apr 2014 12:23:13 +0000
Trending Topics
© 2015