Transplant Games of America

How exciting that the Transplant game came to Utah, We got shirts made for the event to show Makenzie support. The first day was August 3rd. Today is the beginning of the transplant games. Makenzie did her first event in the transplant games this morning! She competed in her very 1st 1k cycling.
We have already met so many amazing people from out of state that can relate to Makenzie, Tonight was also the opening ceremony of the transplant games. Makenzie was asked to hold the flag to represent Utah/Idaho. It was an amazing, and emotional event. 

August 4th, Makenzie had another event this morning. She played table tennis. It was so fun watching her, she has been practicing for a few months to prepare for this day. She first played against a 12 year old girl from Texas who had a lung transplant. MAKENZIE won that round. Then she went against a 14 year old girl from Philadelphia who also had a lung transplant. Makenzie didn't win that round. Then Makenzie and the girl from Texas went at it for the gold on the final round, it was a nail bitter, they had to win 3 out of 5 games, they were tied 2-2 and Guess who won the gold? Makenzie got first place over all!! Woot woot way to go Mac N' Cheese!! So grateful for her donor, if it wasn't for them she wouldn't be here competing. 

Tonight was an emotional night at the Donor Tribute Ceremony. It was an amazing line up of recipient's sharing stories, and a mother sharing her story of donating her little 2 year old girls organs. It hits hard to me on both sides of organ donation. My little sister Jessica was a donor when she passed away, and with Makenzie being on the receiving end of it, we are so grateful for her donor. Makenzie was also part of the light ceremony, it was such an amazing event to watch.

On August 5th, MaKenzie's 3rd event she wanted to try corn hole. She did amazing at it. She finished with a silver medal!! 

Also For the transplant games, they had an option to make a quilt square honoring donors. Makenzie made one for her donor, and today she was able to pin it on a quilt that will get quilted together with other quilt squares, and travel with the transplant games. I also made one for my sister who passed away at the age of 13, my parents decided to donate her cornea's and heart valve's. 

After the quilt pinning ceremony, we were walking out and a guy stopped Makenzie and told him he had heard her story, and told her that he had lost his daughter 5 years ago, and was able to meet the girl that got her heart. So heart transplant recipient's are near and dear to his heart.
After his daughters passing they started a memorial bear drive, where they deliver bears to hospitals for the children staying there. He happened to have a backpack full of these bears and gave Makenzie one. 
These families that give at a time of grief are the hero to families that are on the receiving end. Because if it weren't for them Makenzie, and so many people would not be here to live life. We are so incredibly grateful for MaKenzie's donor family and the decision they made to give her a second chance at life. 

Last day of the transplant games. Makenzie competed in darts (cricket) and darts (501). She did amazing, in cricket she got silver, and 501 she won the bronze. It has been a long exhausting week, but so inspirational at the same time. We have met so many amazing people from donor families, to recipient's. From hugs to tears, laughter and hope. 

The transplant games happen every two years, who knew lol. We just heard about it this year, and Makenzie had so much fun meeting kids just like her.
Maybe we will try and travel to the games in 2020. Here are some highlights of today. Makayla and myleigh also met some ladies from Australia and they gave them a shirt from Australia and a koala bear !!

5 events, 5 medals. She did amazing, her first years of the transplant games!
Gold in cycling
Gold in table tennis
Silver in corn hole
Darts (cricket) silver
Darts (501) bronze
#hearttransplant #teammacncheese #teamutahidaho
Makenzie also helped set a Guinness world record of having the most transplant recipient's in one room of 540 recipients!

Hospital stay and Tricuspid Valve Repair

It has been a long month and a half. Makenzie got admitted to the hospital August 20th (first day of school) She has had a cough since April. They treated her for Pneumonia about 4 times, and finally her Cardiologist decided to do a CT scan of her chest and sinuses. Come to find out she had fungus in her lungs ( the term is aspergillus). They ended up doing a sinus clean out and went down her lungs to take samples of the mold. We ended up staying a week and a half.
On September 12th Makenzie had a Cardiology appt, she wasn't feeling very well that day. They took blood they they always do and found out that all her levels were either to high or to low, so she got admitted that day. She ended up this time with C-diff, sapovirus, and rhino virus. They put her on antibiotics for the C-Diff, and a 2 days later we were able to go home.
On September 26th we ended up in the ER, Makenzie's stomach has been getting a little enlarged through out the week, I thought maybe it was her C-diff that was causing the problem. She ended up getting admitted again, they thought at first it was her liver malfunctioning, but she ended up having ascites which is the accumulation of fluid in the peritoneal cavity, causing abdominal swelling.They ruled out her liver, kidney and lungs. They were worried that it was her heart being in rejection, so she ended up getting a cath done, they also did transesophageal echocardiogram, which will allow them to get a closer look at her tricuspid valve that is leaking. Come to find out they do think it is from hr valve that leaks, We ended up staying in patient at the hospital for 10 days this visit. Primary Children's Hospital does not clamp tricuspid Valves through the Cath Lab, So Dr Molina reached out to a Dr at IMC hospital to see if Kenzie was a good candidate for the procedure. Come to find out she was and they scheduled her for the procedure October 10th. We met with the Dr. Dr. Whisenant the day before, to talk to him about the procedure, we found out that he has only done 2 cases like this and none of them were children, it was a little hard to hear that, but he felt pretty confident that he could do it, and if not he would stop the procedure. The good news that made me feel more comfortable with this was that Dr, Gray ( her Pediatric Cath Dr was going to be there with her) 
It has been a long morning, we got to IMC hospital at 6:45 am. They are definitely not a pediatric hospital, they gave her a ginormous gown when we go here lol, they eventually found a smaller one. They tried using an adult blood pressure cuff, that didn't work so well, and no child life specialist 😉. She was definitely not having it. 
The procedure started at 9 am, she was super nervous about it, I think I was more then she was, but she did great. The procedure took 3 hours. It was a long three hours. (This hospital has way more code blues and code strokes then primary's, it gave me a panic attack Every time it went over the intercom) This was there first ever pediatric tricuspid valve clamp they have ever done. So when those calls came over the intercom my heart stopped for a min. But They were able to get her tricuspid valve clamped successfully. Dr. Whisenant said she did amazing, better then what they were hoping for. The Drs and nurses were so great to accommodate her needs, before and after the procedure, they even gave her a balloon and some candy, after her procedure. We are not sure of how long she will have to stay or if she gets to go home today. If she has to be monitored they will most likely transfer her to Primary Children's hospital. We are Hoping this will help her body and heart feel so much better. She is so over hospital visits.