Today has been yet another day of the hospital flow. Yes, that’s correct, I am in the hospital again. This journey is constantly proving to show how volatile this situation is.
This Tuesday I had my appointment with the amazing Chelimsky duo at Children’s Hospital of Wisconsin. My dad, mom, and I all woke up very early around five in the morning to get ready to head to Milwaukee. I scavenged to get an outfit to wear, an activity that has become so very hard with my swollen and huge abdomen. I finally found something that did not have buttons on it so I could slide it over my distended belly. Once we got settled in the car we took off. As we neared the hospital my nausea began to increase. All I had to eat was my morning medications and a bit of applesauce with a sip of iced coffee to swallow it all. I then began to forcefully throw up over a liter of stomach contents. I felt so ill. My parents helped me to the restroom and I changed into a pair of pajamas we had packed just incase.
Five minutes into our appointment, Dr.Gisela Chelimsky was very concerned. My abdomen was so distended, I appeared to be several months pregnant. She then left and began to make calls to have me admitted straight away. She said the rapid decline that has happened in the past few weeks needs to be stopped. My parents and I could not help but cry a bit because it was such a relief to have someone wanting to help me. I was then taken up to my room and we got settled in.
It was a lot of rough news that then followed…the doctors told me that I am in full intestinal failure. That means my body is not able to nourish or hydrate itself through my digestive system. I am totally reliant on TPN. Further imaging showed air fluid levels and my colon becoming stretched out and lacking muscle. All of these signs further point to things not moving. And then, more bad news. The surgeon stopped by and said I am no longer a candidate for the gastric pacemaker. It will not help me since nothing else is working. They do not even think an ileostomy would provide relief, if my intestines aren’t even working. At this point we are unsure of what to do.
I have had my steroids ramped back up to 60 mg. I know I have to do this but it is hard to hear as I hate the side effects… Anger, facial swelling (moon face), weight gain, sporadic stretch marks… I will be able to deal with these, I just don’t care for them. I also have begun IVIG. This is an18 hour infusion that provides my body with new antibodies. It is made from over 10,000 to 50,000 selfless donors. That is so amazing to me. Thank you to everyone that donates some form of a blood product. Blood/Plasma donation is a spectacular act of giving. I am currently on day two of my infusion. I am rather quickly experiencing fatigue, bad headaches, joint aches, low blood pressure, and high heart rates. These are all side effects from the infusions. I should only have a few more of these infusions. I am not allowed to leave my room during the infusions and receive vital checks every 15-60 minutes. That’s the rule of the infusion. I will then need to do these for two more months. The hope is after three months we could see some results from it. We are hoping an autoimmune process attacking my digestive track will be stopped and start to turn around. At this point we are trying everything.
Today I refused anymore invasive clean out practices. They are not providing me any relief and are violating. Today I just needed a break and have my privacy. I may need to try them again tomorrow. I have been switched from the highest dose of Amitiza to Linzess. I am on triple the amount of bowel stimulants. I am getting injections twice a day to try and make my small bowel move. I am receiving antibiotics through my G tube that have a small stomach simulant as a side effect. If we continue on this route we will move down to the PICU/ICU for a day to try a new medication. There we will try a new medication and monitor me very closely as we give it. It has a chance of moving my bowels and we need to exhaust every option.
The surgeon told me that transplants might be a possibility down the road. It is a massive choice, but we are going to be relentless to keep me going.
To be perfectly frank, I am scared. It is hard to see my body change in less than 10 months. My swollen hard belly. My line hanging out of my arm. My feeding tube protruding from my belly. My thinning hair from the process of being so ill, now only needing one pony tail from two or three. My inability to keep myself alive from my own digestive system.
I am going to grasp onto hope. Sometimes hope is all we really have. Hope, Faith, Family and Friends. That is what sustains me.
Thank you all for the prayers, kind thoughts, cards, gifts, and so much more. I truly feel everyone’s love an support. And I am especially wrapped in love since my grandparents traveled from Oklahoma to see me. That was a true gift.
I am hoping to have brighter news to update you all with soon. For now I leave you with my gratefulness.