Hey everyone!!! Its gentrie! Well I know it has been very long since I have given everyone an update so here is one!!! I now have my permanent pacemaker and it is doing amazing! On November 2nd I collapsed. I spent 2 1/2 months in the hospital after to get my memory, movement, and speech back. I also was able to go on my AMAZING Make-A-Wish trip on January 15th to the 23rd! It was unreal! Words cannot even describe it!!! I am now back into school doing half days!!! With my memory still gone I am having to re learn everything... From the begging like who I was and also who my parents and family was! Its been a long and hard couple of months but just like all of my other struggles I have had I am turning it into a learning experience! I am so grateful to all of the support everyone had given me!! And now its my turn to give it back!!! As I am sure everyone knows that we did tons of fundraisers to help me get my Pacemaker! But now with the foundation I have for me... With help from the professionals we are turning Fight 4 Gen in to a non-profit foundation to help other kids or adults who are struggling with Gastroparesis. The money donated will go to others who need help with either paying for medical bills, feeds, TPN and Lipids, or even help with getting money for their pacemaker! There are many who struggle from this disease but just don't know how to get help... Now that I have gone through it all, I can now help others who need the help I did! I am only throwing up about twice a week and I want to give that hope to others! Please help me spread the new news about Fight 4 Gen! I would appreciate anyones ideas and anyones help with getting some funds into the new Fight 4 Gen foundation!!! XOXO Gentrie and her Family
Hey everyone! Here is a quick update! I now have my permenet pacemaker, and I have been home for about a week! I leave tomorrow to New York for the Today Show! They are going to interview me and try to get some awarness out about Pediatric Gastro Paresis. I can't wait but I am a little nervous! But hopefully it will all work out! I get back on Saturday, and then on Tuesday I go to Primary Childrens where Dr. Barnhart will put in a J tube! Right now i have a GJ tube but it keeps coming out. With the surgery on Tuesday I will be in the hospital for about a week and a half. Then on the 14 me and my dad are heading out to Ohio to again meet with my doctors in Columbus! I don't know how long I will be there. But I guess we will just take a day at a time! Right now I am able to keep clear liquids down and I am trying some other things but still very small amounts! XOXO Gentrie
I am finally here in OHIO!!!! I can't believe it!!! When our insurance was denied, we had to cancel our appointment and I was SO SAD!!! I don't think that I stopped crying for several days. I wasn't sure that I could hope for this day a second time. My mom and I got on a plane on Monday the 5th and then the next morning I had to be in the hospital by 5:45AM and the pace maker was placed a couple of hours later. You can't imagine how excited and scared all at once that I am!! I am so hopeful that this will help me eat so that I can return to school and enjoy my friends and family again. I am so thankful for my family, friends, community and completely kind strangers that have made this possible for me. I will never forget all of the love and kindness. Someday I want to be a doctor and help take care of kids with stomach problems because I will be able to understand their struggles and offer hope.
My procedure went well yesterday but the pacemaker should read a certain strength, this is an actual number that a machine calculates and apparently my device was not reading a very "strong" number and so my doctors recommended doing a second surgery to make adjustments. Last night they had me drink a sip of apple juice and I threw it up immediately......I was devastated......I wanted instant results. I cried enough to give me red eyes for the rest of the night. Later, I found out that my pacer wasn't working correctly and also that the process of eating will not be quick and easy but should improve as time goes. I will go back into surgery this afternoon. Another day of not eating or drinking.....not much different for me.
I just returned from recovery and am in quite a bit of pain. I also itch like a monkey from the medications that they gave me. My doctor, Jaya Punati (I really think she is so nice and smart!) has been in my room coaching me for almost an hour. Thank goodness that my mom is here listenting so that she can remember all that the doctor said. Already my pascer feels better today than yesterday. I am not nauseated which is amazing! My doctor says that we will be SLOW and steady in introducing liquids and then solids. I just had two ice chips which I hope to keep down for the first time in so many months. She said that I can expect some set backs, maybe two steps forward and one step backwards but that will be okay as long as I am moving forward. I am just dreaming of what it will be like to eat. Even a small cracker seems to me like a nice juicy steak, at least in my mind.
I am too tired to write much else tonight. Apparently every hour if I feel up to it I can have a little clear liquid with the emphasis on LITTLE. My doctor recommends the Italian ice......maybe because the head doctor here is Italian. I guess with the choices here at the hospital the Italian ice is said to be the best. I don't think it will matter to me.......ANYTHING will taste delicious. Thank you for your prayers.....I know that God is with me and has given me the strength to continue when I didn't want to and is the center of my hope!! I think that I will sleep well tonight if all of the buzzers and beepers will stop. Thanks to everyone!!!!! xoxox
I am almost there... to getting my pacemaker put into my stomach! I leave the 21st!!! Then on the 22nd I get the pacemaker put into me! And then I am magically going to keep food down! The doctors said that all the patients they have had that are like me have had great results! So when I hear that I wasn't scared about the surgery anymore! so that was a great releaf! But for now on the 16th I have my brothers wedding. But right now i am just counting down the days tell I leave to Columbus, Ohio! I will right soon!!!! Love Gentrie
Gentire has BOTOX!!!!! Not my mom......but me! I have a certain muscle in my stomach that is over active and in a constant spasm so they went in yesterday and surgically placed some botox in that muscle to cause it to reset itself (hopefully) and allow my stomach to work better. We won't know if it helps for a week or two. If this does not work, they have recommended that I receive the GI Pacemaker. We will be working towards this in the mean time and be certain that we can move forward as soon as possible. The doctors were great, the hospital nice.....but not as nice as Primary Children's. It was so helpful to have a team of doctors that specialize in motility disorders. We still have much to understand and I still can't eat but hopefully I will be able to soon. I am a little disappointed that I didn't get the procedure this time, but I know that there is a process and that eventually I will get better. It is nice to spend time with my mom but we miss my dad. I am anxious to be home and have my friends and family around me. Thank you for your prayers and faith..........please keep praying! XOXOX