#bravelion

Things are going along...Charlie’s sodium is very low and he has been eating a lot of salty foods this week. It has worked and his level improved! His creatinine is still hovering around 72, but everything else is good. He was able to decrease another medication and eliminate one (which was one he had to take 4 times daily, so it feels like we have all this time on our hands now! 😂). Overall, he is doing well. Each week is an adventure! Each hospital visit is new information. Charlie is looking forward to school starting - he is anxious to see some friends. I am nervous about it. Nervous that he won’t drink enough water at school, nervous that he will get sick, nervous he will get hit in the stomach or bump into something. I need to get over that. One day at a time! XO

Today has been challenging. We have been here (SickKids) early all of this week and it has been long days. Charlie is not a happy camper. He is tired, grouchy and annoyed that he is here at the hospital. He has been fighting me on everything, complaining about everything and generally just upset. He is 6, and I am trying to remain patient given everything he has to go through. At one point today, I had to go for a walk and get a coffee and clear my head. As I was walking, I saw a woman (a parent) talking with someone quietly in a corner, and they were both crying. No, sobbing. I realized, as I often do when I am here, we are very fortunate. I could be that person today...sad that there is something going on that is out of my control. I advise anyone having a bad day, or just ‘a day’ to spend an hour walking the halls of this miracle of a building. You will understand and be grateful. The biopsy is done, we will get to go home tonight and hug the rest of ‘Team Dunn’. Charlie will be happy again. 💜

We received the news that Charlie is going to be able to come home tomorrow! It’s so early and so exciting...it is almost hard to believe. He is very excited, as is Daddy/Matt, to sleep in his own bed. Henry is so happy - he wants to make something special for dinner to celebrate! Violet just knows they will be home soon, but it’s funny...I think she understands a little more than we think. While she was so happy to be with Omee and Opa last week, she definitely wanted to be home and she keeps mentioning the ‘hopspital’. She also keeps offering me an ice pack...hmmmm. I wonder where she gets that from! 😂 Matt is busy meeting with a variety of people today to ensure we have all of the information we require to get us through the weekend. Our boy is coming home! Yay!

Home at last! 💜

First - today is Henry’s 9th Birthday! So weird how quickly time passes. He is growing up to be such an amazing boy. Here we are 5.5 weeks out and life is carrying on. Our new normal. Charlie will keep his central line and wait on the biopsy for a little while. There are some little pockets collecting fluid that have formed (happens regularly after transplant) and they don’t want anything to happen to them during the biopsy. Charlie will have another ultrasound next Tuesday and they will decide if they would like to continue to hold off or not. We did a photo shoot for the SickKids foundation last Monday - it was fun! Charlie did so well! His photos will be used in brochures and advertising, as well as for the SickKidsVs campaign to support fundraising for the new building! So happy to be a part of this initiative! ❤️

The best laid plans... 😕 Charlie was supposed to have a biopsy today, however his creatinine was up on Monday to 63. Today we went to the hospital expecting to have our usual clinic visits and to stay overnight. After a busy day (bloodwork, clinic, ultrasound, x-ray, various consultations), we were able to go home for the night. His creatinine is back to 56. The biopsy is now tomorrow (Wednesday) morning at 9am, however the central line won’t be coming out for a little while. Charlie is really hoping he doesn’t have to stay overnight on Wednesday...It has been a challenging week. Charlie is supposed to drink 2L of water everyday. He has been doing it, but it is a constant battle of wills to get him to actually do it. Then the hiccup with his creatinine. They (renal transplant team) are concerned that it is a rejection episode. This is quite normal and doesn’t mean full rejection of the new organ. One of Charlie’s doctors explained it very well today. She said ‘Imagine that the organ is not recognized by the body and the body is wondering what is happening so it sends soldiers to fight it. Essentially what we want to do is put these soldiers to sleep. Occasionally, a few of them wake up and we have to treat it and get them back to sleep through medication changes, etc.’. Makes sense, right? Anyway, he seems alright....not super happy about the water or all of the meds or staying overnight at the hospital, but generally, for a 6-year old...he is a champ. Here’s hoping we can come home tomorrow after the procedure. 🦁