Starting TPN :/

I wish I had amazing news to share with you all but that’s not the case. Last Thursday we went to the mito clinic where my pediatrician works. She was concerned about how much fluid I had in me and how swollen I was. ( I will insert a picture of my feet for a example at the end of this post.) Basically the fluid in me was not coming out the way it was supposed to. She was also concerned about nutrition. About a month ago I was told I had dysmotility which is the slowing down of the gut. Since I was diagnosed with that I barely have an appetite and I have to force myself to eat because I’m never hungry. I am luckily able to keep the food down but I have only been able to eat very light food that is easy to digest or else it literally passes through me within minutes. I have also been gaining weight even though I’m barely eating. What she thinks what has been going on is that my body isn’t absorbing the nutrition from my food. She told us she wanted to put us on TPN as soon as possible. We left knowing that we would most likely start it that Monday. My  GI doctor was the one who prescribed it since it is my GI system that is all wacky. Well…., he likes to monitor his patients in the hospital when they start to make sure my body is okay with the TPN, because it can cause some issues.

So Monday we were directly admitted and that night we started TPN. My D10 fluids I have been getting was added to the TPN bag but it is at a higher sugar level. Yesterday me and my mom noticed my stomach was a lot flatter and the stretch marks I just got because I was so swollen and full of fluid were already starting to fade. Yesterday was the first day since January my face was not swollen at all! The right side of my face typically is swollen when I’m in a crisis just a symptom of hemiplegic migraines but it was my whole face that was swollen because of all the fluid. I am also able to now eat without getting nauseous!! Strangely after I eat I can feel my stomach digesting my food it’s so weird…. The hospital we are at is not the typical hospital we go to but this is my GI doctor’s hospital so it is a little farther away from my house but it’s not too terrible. I also have my own private hospital room which is such a luxury! Plus the whole pediatric ward is purple! Apparently the hospitalist who was on yesterday didn’t do what my GI doctor wanted him to do so I will update on that. They have therapy dogs here which really helps with my anxiety and they actually take Polaroid pictures of you with the dog and you get to keep them! We are hopefully leaving on Friday. My GI doctor wants to wean me down to at least getting 20 hours of TPN. Please pray we are able to do that and get home before Saturday which is my little brother’s birthday/party and I really want to be there! Oh and tonight we are going to try 2 hours with no fluids we’ll see how that goes please pray that goes good as well and if you could also pray for one of my mito friends who is in the hospital again.

How bad my feet got^