{"id":66,"date":"2024-04-04T01:13:06","date_gmt":"2024-04-04T01:13:06","guid":{"rendered":"https:\/\/cota.org\/cotaforjack\/?p=66"},"modified":"2024-04-04T01:15:38","modified_gmt":"2024-04-04T01:15:38","slug":"daily-preparation-for-next-months-surgery","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforjack\/2024\/04\/04\/daily-preparation-for-next-months-surgery\/","title":{"rendered":"Daily Preparation for Next Month’s Surgery"},"content":{"rendered":"\n
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(Originally shared March 12, 2024)<\/p>\n\n\n\n

It\u2019s 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 pi\u00f1ata. Everyone is invited, so we will see you April 21!<\/p>\n\n\n\n

In addition to the pi\u00f1ata, I\u2019ve 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.<\/p>\n\n\n\n

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\u2019m so beyond grateful for this option. It\u2019s 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\u2019t 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!<\/p>\n\n\n\n

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\u2019m so proud of this kid. He\u2019s handling it like a champ and even offering to check it versus me reminding him. This will help the transition next month tremendously.<\/p>\n\n\n\n

Jack got 4 vaccinations today to give his body a boost before potential spleen loss. His poor body is in overdrive and he\u2019s 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.<\/p>\n\n\n\n

We signed Jack up for the Children\u2019s 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\u2019t 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\u2019s 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. <\/p>\n\n\n\n

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\u2019m so glad they are offering this, as it\u2019s weighing heavy on Viv\u2019s heart in particular. Hopefully the tour will help calm some of her nerves.<\/p>\n\n\n\n

We have just about 1.5 months to go, and hopefully all will go smoothly between now and then!<\/p>\n\n\n\n

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To read previous posts about Jack’s health journey visit https:\/\/www.caringbridge.org\/visit\/jackwilk<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

(Originally shared March 12, 2024) It\u2019s 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 pi\u00f1ata. Everyone is invited, so we will see you April 21! In addition to the pi\u00f1ata, I\u2019ve channeled my […]<\/p>\n","protected":false},"author":1867,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-66","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\nDaily Preparation for Next Month's Surgery - COTA for Jack<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cota.org\/cotaforjack\/2024\/04\/04\/daily-preparation-for-next-months-surgery\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Daily Preparation for Next Month's Surgery\" \/>\n<meta property=\"og:description\" content=\"(Originally shared March 12, 2024) It\u2019s been a very busy few weeks. 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