(Originally shared March 12, 2024)
It’s been a very busy few weeks. Lots of prepping and planning. Jack has designed his invitation for his goodbye pancreas party, and I spent entirely too long making a pancreas piñata. Everyone is invited, so we will see you April 21!
In addition to the piñata, I’ve channeled my nervous energy into making adaptive shirts for Jack to use in the hospital. According to other families, the kids can start wearing street wear once they are out of ICU, so I made him a dozen shirts that unsnap across from collar to sleeve and two long Sleeve shirts that snap along the arms and down the side seam so he can change with all the tubes attached without having to call a nurse to assist. Jack really appreciates any normalcy he can feel when in the hospital, so hopefully these help.
We have school figured out. His current school is going to keep him enrolled and provide worksheets and subject matter. I met with his teacher today and got a high level of what we need to cover, and emailed the social worker at the hospital to get him signed up for a daily tutor. I’m so beyond grateful for this option. It’s one less obstacle I have to figure out, and one more constant for him, which is a HUGE win. I also found out he will still see the tutor when he is outpatient at RMH so I don’t have to be the bad guy constantly pressuring him to get stuff done. Also, anyone who knows me knows I am not a teacher and am terrible at explaining things. Thank goodness for John to balance me out!
Jack got a glucose monitor this week and has been checking his glucose levels throughout the day. Another HUGE win. Jack has a debilitating needle phobia so this has been my biggest stress. After I demonstrated the finger prick was barely felt, he gave it a try and I’m so proud of this kid. He’s handling it like a champ and even offering to check it versus me reminding him. This will help the transition next month tremendously.
Jack got 4 vaccinations today to give his body a boost before potential spleen loss. His poor body is in overdrive and he’s experiencing minor reactions right now leaving him miserable. We need to get one more shot in before the surgery then we should be good to go.
We signed Jack up for the Children’s organ transplant association (COTA). Since he is getting an islet transplant he is eligible for their services and even receives a $5,000 grant from a generous donor who set this up for all kids who receive pancreas or islet transplants. The awesome thing about COTA is all funds we raise for COTA are then distributed to kids like Jack and can be used to assist with transplant-related expenses for the rest of his life. They never expire and won’t be considered taxable income when he uses it to pay for insurance premiums, medication related to his chronic pancreatitis, and potential complications he may face. We are financially secure now and can handle his medical bills, but this gives us security for his health when he’s an adult and no longer on our plan so that he can afford the various medications he will need for the rest of his life.
We are heading down to Cincinnati over spring break for Jack to get a Ct scan and meet with the diabetes team again. While he is doing that, his siblings will be meeting with the child life specialists for a tour and to see the sibling hangout room. I’m so glad they are offering this, as it’s weighing heavy on Viv’s heart in particular. Hopefully the tour will help calm some of her nerves.
We have just about 1.5 months to go, and hopefully all will go smoothly between now and then!
To read previous posts about Jack’s health journey visit https://www.caringbridge.org/visit/jackwilk