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May 05-11

This Week

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It’s been awhile since I last updated everyone and I know I shouldn’t wait until something negative happens but here we are. Even though it’s a negative that promoted this update, there are positives as well. 
 Bryce had another gastric empty study done on September 28. He wasn’t about to let the hurricane stop him from getting that test done and out of the way. Unfortunately the test showed his stomach emptying is still delayed. So he is still on a semi restricted diet and has to keep taking 3 different meds for it. The positive though is that even though his results showed that his stomach was slow, Bryce isn’t experiencing any symptoms. His nausea and vomiting is soo much better! So they decided to go ahead with another test they need for the other surgery. So on the 31st, he will do another 24 hr ph/manometry test to measure his acid reflux to determine if/when he needs the Nissen surgery to help with that. 
When hurricane Ian began heading our way, Bryce did what he alway does; he started prepping to take care of his family. We put up the shutters and made sure everything else was taken care of. After the storm, Bryce was right back out there taking down shutters and cleaning up debris. Between the sun exposure and just over all over doing it I think, he started not feeling the best on Saturday. Sunday morning he woke up and threw up. By 11am Sunday morning, after throwing up several more times, he had a fever and was so weak he could hardly walk. I helped him into the truck and got to the ED in Orlando by 1pm. His temp was 102.7 and blood pressure was 79/49. He was quite dehydrated. His amazing lung doctor came down to check on him and then she admitted him. They ran alllllll the tests. Full body MRI. X rays. Cultured everything. Took out his PICC line and started 3 antibiotics. Good news: everything looked great. Bad news: not sure what happened. Said it was probably just a common bug he picked up. So we spent 5 days back in GT6 where we are now famous. Even the food delivery people know us now.  There was some initial concern that it was his liver, but the liver doc said nope, liver looks good. Said there are 4 levels are scarring of the liver, and the first 3 stages are reversible. Said Bryce has some scarring due to Covid but that it’s healing. It just takes time. Definitely a much needed positive! So after 5 days of antibiotics and monitoring him, they discharged him. 
Every hospitalization is frustrating but Bryce perseveres. Our girls continue to be resilient as well. We spend as much time as possible just enjoying each other’s company. 
Last week was a bit eventful. I started trying to go to work for a few hours a day to see how it goes. After 14 months of being within 5 feet of Bryce practically 24/7, I’m having a little separation anxiety. Lol. He is doing great and doesn’t NEED me like he used to, so this too is a positive. Our fence was the only little damage we had from the hurricane, so his parents came down to replace the fence. Bryce can’t really help due to being extremely sensitive to the sun and also just being weakened from not only the most recent hospital stay, but the last 14 months as well. It was a bit of an unfortunate reality check when he was hospitalized after the hurricane clean up. He just isn’t physically able to do what he used to, and it’s frustrating for him. So it was a bit stressful having people at the house all weekend doing the work Bryce wants to do. But Bryce was good and stayed inside. He’s been kinda tired the last couple of days and I was just praying it was due to the  busy week and weekend. However, today was just a little worse. He cancelled rehab and just tried to catch up on some sleep. By 6pm, he started a low fever at 100.2. So combined with a headache, body aches and being lethargic, his blood pressure was also a  little low. We had even held his daily blood pressure meds, because I was monitoring it and I didn’t want it to drop anymore. So we packed up, dropped our precious girls off at my moms and headed up to Orlando. We are currently sitting in a room in the ED waiting to see what they say. They took blood cultures and started antibiotics in the meantime. So lots of news, but also lots of positives. We continue to be ever grateful for every act of kindness and support from everyone. God is in control, we know this. So we just keep praying for His will to be done. We know He has a purpose.  ❤️❤️❤️

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