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Demi’s journey to transplant was so much harder than I ever could have imagined. She was so sick even though she tried so hard not to be. As fine went on we really learned that Demi’s tolerance for pain and not feeling well was so high because it was never until she reached a critical state that we would see signs. Her little body fought so hard everyday to do regular things and to try and grow. They say that when your kidneys don’t work you feel very sick and it’s almost like a metallic taste in your mouth all the time so you don’t have an appetite or want to eat. This proved to me a big problem for us for many reasons. Demi developed an aversion to milk early on but we have the most incredible dietician on our team. She taught me and worked with me daily over the phone coaching me to try to grow Demi to transplant this consumed us for the first 1.5 years of her life. In order to get a kidney transplant you have to weigh a minimum of 10kg because you need to be big enough for an adult kidney. At this time it is not an option to receive a transplant from a child donor as they haven’t proven to be successful. Demis only chance was to grow to that minimum weight requirement so she could be considered for transplant. Demi was so sick and was very nauseous and would puke all day long while we pumped her almost all day long hoping that more would stay in than come out. Demi was also high risk for developmental delay but I owe her success to her brother and sister. She is the youngest of three and naturally she wanted to keep up to them and so what they did despite how terrible she was feeling. We aimed to get her calories via gtube so for the rest of eating we kept it fun and tried not to ever pressure her just make food positive and available to her in hopes of keeping her eating little bits so that the transition to eating once she felt better would be easier and possible. So up until transplant our whole life was centred around growing Demi no matter the sacrifice.

Demi fought hard but at 2 months old she became dehydrated and our life with her gtube began. I remember being so emotional at the fact of them putting a tube into my baby but I quickly fell in love with this little tube and ten pressure it took off of Demi. With extra hydration she fought hard despite how critical her bloodwork looked and at 6 months old on Halloween night I got a call and her potassium spiked so I rushed her into the city and I remember feeling like I was on ER all the tests came instantly she was critical and they needed to check her heart because with a potassium that high she coke have a heart attack. It was that night her amazing team lost trust in the little function her kidneys had and our life with dialysis began. We stayed in hospital for 3 weeks and I was trained along side my mom (my support) so that would be able to do it at home. We would get semi loads of supplies dropped off every month and Demi’s crib was set up beside me.

She was on dialysis for 1.5 years and overall things went well but there’s a lot of fear associated with filling up your 6 month olds peritoneum with fluid while she nauseated all night getting sick often. Trying to change her and the sheets with all the tubes....not wanting to upset the treatment or trigger an alarm because it’s a sterile process to disconnect her and she needed the dialysis to work all night as it would allow her to have safe levels of bloodwork...or filtered all the bad stuff like someone’s kidneys would. If we triggered an alarm or upset the treatment at time we would have to start over and set up a new one in the middle of the night which takes time. Most days I would set her treatment up in the afternoon so it Dialysis was life support for Demi but it allowed us to help her fight her way to transplant and be at home not home is where we stayed. It was hard to not live and have friends and family judge us for the decisions we made, especially during COVID. To us our opinions didn’t matter we chose to listen to her team and they guided us in the best way they could. Whether people agreed with choices we made or how we were living we knew that as a family we had to do everything we could to get Demi a transplant. Demi went through extensive testing prior to transplant to prove she was healthy otherwise and strong enough for transplant. Her dad Cody went through tests for almost a year and had proven to be a match for Demi en in was a huge relief because there were so many things that could go wrong and didn’t. We were at home ready and waiting for the call to Edmonton. It was stressful leaving in a pandemic with a child like Demi as our whole family lived in a bubble because her transplant has gotten postponed once due to Covid and if any of us tested positive when we got the call she would be sent home and postponed again….but Demi fought hard and as a family we made any and all sacrifice needed to her her there.

On April 28th, 2021 Demi got her transplant and it went well. I wasn’t prepared to see her the way she was in PICU but as a mom I don’t know if you can prepare for something like that. The doctors call Demi a unicorn and always have she always proves doctors wrong it’s like she has magic inside of her. She has a fight for life and an appreciation for life’s beauty despite what it’s thrown at her. She truly loves life more than anyone I’ve seen. After 3 days in PICU she was off to the ward already she was doing so well until dehydration set it. They didn’t know what was wrong so they assume the worst to save that new kidney and started her on big antibiotics and antivirals and it was a scary week but she came out on top! All of her new meds took some time for her and I to get used to. They were hard on her raw little belly after not eating for days and I remember some nurses coming in astronaut suits just to give Demi a med and I was bawling because they told me you can become infertile.

Her medications are considered hazardous and cytotoxic…so I was already an emotional wreck functioning on little sleep and food not worried Demi wouldn’t ever be able to have kids and what was the risk of these new meds to my kids at home…how would I keep all of the safe at once? Once I took a breathe I asked questions to the right people and was soon at ease with a plan and happy that Demi can be a mom one day if she wanted to be.  we were in hospital for 3 weeks and stayed in Edmonton for 2 months with lots of bloodwork and outpatient visits until it was safe for us to go home at the end of June and home we went.

We came home with new routines that took some time to adjust but no dialysis! Over the next year she did really well as we learned to balance life with an immunocompromised child. She ran into a kidney infection and a couple bladder infections that needed treatment. She gets monthly bloodwork that her team reviews. And now we have clinic in person only every 3 months. Demi’s team is like family to us and will be until she is 18.

Fear of Demi getting sick is something that weighs heavy on our hearts because when she gets sick it’s just different. My older kids who are now 8 and 6 were forced to grow up so quickly and their awareness of sickness and not wanting to bring it home to their sister is admirable. Demi is only 4 but she’s active she plays hockey, ball, she dances, she’s in preschool and goes to daycare one day a week. We don’t bubble her we let her live or what would all this fight have been for? It doesn’t mean it’s always easy though because as much as you want to protect Her you can’t. If we see visible illness we try to keep her away but she also needs to build up her immune system so it’s all a balance. My other two kids worry more than they should in fear of me and Demi going back into the hospital. Even though they moved to Edmonton with us they’ve had to sacrifice so much and have never complained and if anything wanted to make them to help their sister. They are the best siblings to Demi and she adores them.

So life was good and Demi was doing incredible until April 2, 2023 when she faced a greater fear and came closer to death than ever before.

Part 3 - Sepsis & Recovery


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