{"id":193,"date":"2025-03-27T04:24:43","date_gmt":"2025-03-27T04:24:43","guid":{"rendered":"https:\/\/cota.org\/cotafortjsfight\/?p=193"},"modified":"2025-03-27T04:34:13","modified_gmt":"2025-03-27T04:34:13","slug":"home-but-not-at-the-home-stretch","status":"publish","type":"post","link":"https:\/\/cota.org\/cotafortjsfight\/2025\/03\/27\/home-but-not-at-the-home-stretch\/","title":{"rendered":"Home But Not At The Home Stretch"},"content":{"rendered":"\n

Since Tj has been home there has been a few rough patches, his legs kept giving out on him, causing him to have a ton of meltdowns. The fact that he is unable to do one his favorite things, jumping on the trampoline, is another trigger that has been causing him to have meltdowns. During one of the meltdowns Tj pulled his g-tube and as result it became looser and opened slightly. <\/p>\n\n\n\n

During one of Tj’s falls, where his legs gave out, he fell and landed on his insulin pump, due to the fall during the changing of his Omnipod it was discovered that his insertion hole was doubled in size. Mom (Alesha), had to hold pressure for approximately five minutes in order to stop the bleeding. <\/p>\n\n\n\n

There initially were issues with getting Tj’s pain medicine and his therapy once returning home, because his health insurance was not in network with Tj’s PT that is in North Carolina. This made it so TJ is only getting therapy one day a week and the parents are required to pay out of pocket<\/strong>. TJ REALLY NEEDS THERAPY THREE DAYS A WEEK!!<\/em><\/strong> Alesha (mom) had to renew all of his therapies and equipment because after one month of being gone they unregistered Tj. <\/p>\n\n\n\n

Tj’s blood sugars have been stable with a few lows. He was unable to do therapy last week due to low blood sugars. We gave him a few bites of honey bun before therapy today and he was good to go. Tj’s left arm us unable to fully extend without discomfort and left leg is having a hard time lifting without sitting slouched or sideways. We are going to continue to stretch his body to help him with mobility.\u00a0 His legs are still giving out when he does too much. PT and mom agreed that the bike is a Safeway to work his body outside without fear of him falling. Tj’s insides are still healing, and he is on medication to help thin his blood to keep him from creating clots. Tj still has his G\/J tube and alternate using his abdominal binder and abdominal mesh.\u00a0 He has to keep it covered because he will pull at his tube. During his meltdowns he pulls at his abdominal binder and tube. His tube insertion site is irritated now due to him bothering it. He is having discomfort as we wean him from his pain medicine. The family have been able to incorporate the use of his CBD oil to help with discomfort and over stimulation.\u00a0 TJ is on a roller coaster with his bowel because the surgery involved rewiring and reattaching Tj’s intestines, so they are slow to move and his need for pain meds are causing constipation.\u00a0 Constipation is a medical emergency for TJ. On this rollercoaster Tj is going between his bowels not wanting to move and to needing an increase in his bowel regimen, which then causes a full on bowel explosions. Tj still is not letting anything hold him back. He is trying his very best and still meeting goals!!<\/em><\/strong> Tj left Cincinnati with a ton of medication to take daily and now that ton has had nine more to it. <\/p>\n\n\n\n

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