{"id":284,"date":"2024-05-16T01:14:36","date_gmt":"2024-05-16T01:14:36","guid":{"rendered":"https:\/\/cota.org\/cotaforjack\/?p=284"},"modified":"2024-05-16T01:14:37","modified_gmt":"2024-05-16T01:14:37","slug":"a-taste-of-freedom","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforjack\/2024\/05\/16\/a-taste-of-freedom\/","title":{"rendered":"A Taste of Freedom"},"content":{"rendered":"\n
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We are still in patient, BUT since Jack is stable and we are comfortable with his diabetes management, we got a pass to leave for four entire hours today!! It was a blast. We spent an hour at the Ronald McDonald House then ventured over to the Newport Aquarium. Jack had already done an hour of PT and OT including 20 minutes on the bike (half hands only and half feet only) so while he had big plans to adventure, we chose a place that had wheelchair rentals. It proved to be a wonderful afternoon and we even got to see three axolotl.<\/p>\n\n\n\n

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yes, we are still in the hospital. Jack is on day 2 of no liquids or solids via mouth and is at the max feed tube rate 20 hours a day. He also hasn\u2019t thrown up since Monday, so at least that part is a win. From a diabetes management, pain management and even calorie intake perspective, he is ready to be discharged. Unfortunately he is still producing significant amounts of chyle in his abdomen and until the abdominal drainage tube is consistently clear, we will remain here. Jack is pretty bummed but we remind him it\u2019s the best of both worlds: we get freedom to wander and explore but we have access to experts who can reassure us everything is fine. Today seemed much better than yesterday so it\u2019s still possible we will be discharged on Friday. Time will tell! Until then we are finally buckling down on schoolwork and playing lots of games.<\/p>\n\n\n\n

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Yesterday was very special. Jack got to add his fingerprint to the TPIAT mural. He\u2019s been waiting for his turn since the nurses showed him last week. Yesterday was also two weeks post surgery. I truly cannot believe how far he\u2019s come in only two weeks. He\u2019s off pain meds and only takes Tylenol if the nurse heavily suggests it. His current healing pain is less than his daily pancreatitis pain, which hurts my heart so much that he suffered for so long. We are all about the positives, though, and spent the car ride to the aquarium talking about how awesome it is he got to keep his spleen in tact and isn\u2019t as immunocompromised as we had planned for. That means he can go to places like the aquarium only two weeks after surgery and without a mask. He said maybe it\u2019s a blessing it took this long to get a diagnosis and surgical intervention, so going forward I\u2019m going to try to view this experience through his eyes.<\/p>\n\n\n\n

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We are still in patient, BUT since Jack is stable and we are comfortable with his diabetes management, we got a pass to leave for four entire hours today!! It was a blast. We spent an hour at the Ronald McDonald House then ventured over to the Newport Aquarium. 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