{"id":88,"date":"2024-04-05T16:28:32","date_gmt":"2024-04-05T16:28:32","guid":{"rendered":"https:\/\/cota.org\/cotaforjack\/?p=88"},"modified":"2024-04-05T16:28:32","modified_gmt":"2024-04-05T16:28:32","slug":"local-care-finally-established","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforjack\/2024\/04\/05\/local-care-finally-established\/","title":{"rendered":"Local Care (finally) Established!"},"content":{"rendered":"\n
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On Tuesday, after 3+ years of requesting\/begging\/arguing, we finally met the local pancreas expert at UofM Mott! I\u2019ll admit, both Jack and I were nervous about this appointment. It\u2019s been a struggle locally to get the care we need with many misdiagnoses, concerns ignored, and appointments refused, that even when Jack is having an acute flare up where he should be hospitalized, he usually refuses because he does not want the doctors to tell him he\u2019s fine. We went into the appointment guarded, ready to defend our decision and were pleasantly surprised. Not only did the doctor agree with all that Cincinnati had done, he apologized for Jack somehow \u2018slipping through the cracks\u2019 here in Ann Arbor. The silver lining of it all is he stated he would have sent us to Cincinnati anyway had he seen us sooner, since they do not do TPIAT surgery local. He told us he has only ever sent two of his patients down to get the TPIAT just to give an idea of the infrequency of Jack\u2019s situation. Here\u2019s why this appointment was so great. He trained under Cincinnati so he knows Jack\u2019s care team personally. He said he will handle bloodwork, medication, etc. locally going forward and he had a call scheduled to talk to Jack\u2019s Cincinnati team and see if he could take over care once Jack is outpatient. My mama heart is bursting knowing we might be able to come home sooner. Being able to heal in his own house with his siblings present would be wonderful. We are optimistic this is a step in the right direction. Also, it\u2019s so validating to finally have local care that is behind our current plan.<\/p>\n\n\n\n

To get an idea of how significant his pancreas failing is, here\u2019s some metrics. Between July 2021 (his first acute pancreatitis that resulted in hospitalization) and February 8 2024 (the day digestive enzymes were prescribed), Jack had gained 7-8 lbs total. Not annually, overall. Since his digestive enzymes were prescribed to this week\u2019s appointment (8ish weeks), he has gained 7 lbs. That is insane. No wonder he was always tired, weak, and couldn\u2019t gain muscle. I\u2019m anticipating his next round of bloodwork to look much better and hoping his journey out of malnutrition is a total success. He is already a stronger climber than he was back in August before the many hospitalizations. Each step in the right direction gives him a glimpse of what his life might get to be this time next year. Fingers crossed!<\/p>\n","protected":false},"excerpt":{"rendered":"

On Tuesday, after 3+ years of requesting\/begging\/arguing, we finally met the local pancreas expert at UofM Mott! I\u2019ll admit, both Jack and I were nervous about this appointment. 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