Day 857 - First Weekly Update: Oxygen Required & GJ Nightmare

Saturday, April 29th, 2023 - Saturday, May 6th, 2023

 😬 This is the first of the weekly updates...

Warning, this past week has been a nightmare.

🌬️ Even though James did not need oxygen when leaving the hospital he required oxygen immediately at home. The first weekend after discharge James would drop down to 90 every time he slept or napped. Mom quickly bought nasal cannulas on Amazon since our rigged setup with the oxygen mask and neb kit wasn't staying on him. Of course James fought wearing both the mask and the nasal cannulas. We resorted to just laying the mask near his face and increasing the flow.

⚠️ On Tuesday during PT James' GJ came out around 12:45pm! We got in the car and we're headed to Jacksonville to go to Wolfson's. On the drive there they told us they couldn't get us in until tomorrow, so he would need to be admitted into the ER overnight with an IV. We figured since we couldn't get in until tomorrow anyways we might as well just go to our local hospital, St Joe's, because there was a possibility that IR could see us today still it was still early in the afternoon. Full of hope! 🤣  Dad dropped off Mom and James at the ER because he was in the middle of a workday. He would switch with Mom later.

🧑‍⚕️ So many bad experiences with rude and incompetent medical staff between treating James poorly or just not having a clue what to do. Too many situations to write out! We spent hours in the ER. The ER doctor, Dr Gibson, one of the worst doctors was assigned to us. Back in November when his GJ had popped, she discharged us and told us to handle outpatient when when James' GJ was duct taped to his stomach and then nobody would help us outpatient so we had to drive to Wolfson's the next day. It s awful! This time, she was very happy to tell us that the IR probably wouldn't be able to help us till tomorrow and they also probably won't have his button in stock. 😳 Something is wrong with her.

🏥 We were finally admitted to the floor (not the PICU) after an IV was put in. This was the first time they officially contacted IR (4:30pm) because we had to be admitted first. So stupid. They end up telling us that IR is refusing to do the surgery because he doesn't weigh at least 10kg. Mom freaked out on everyone. She let them know that we should have kept driving to Wolfson's in Jacksonville and this is the worst hospital ever. It made absolutely no sense. They were going to let him starve to death? WTF. 🤬 Then they asked Mom if she knew a surgeon who could do it. Again, WTF? 🤯 After a lot of fighting IR finally agreed to schedule James for the GJ replacement in the morning "since they have done it in the past". Exactly! After the procedure the surgeon told Dad, "it was easier than I thought". So this was his first time? 🤷🏻‍♀️ Such a frustrating experience. We will just be driving to Wolfson's in Jacksonville from now on. They are the only ones that have their sh$t together. 

❗Overall his button was replaced but shortly after it was leaking and bleeding. We did not have this issue with the previous button. Mom checked the water and the balloon and it only had 3.25 ml in the water was dirty, meaning there were things floating in it. Typically that would be a huge red flag for a popped button. So every few hours Mom would check the balloon to make sure that there wasn't a hole and it seemed to be keeping the water and also the water stayed clear after Mom had changed it. So we didn't know what to think because even with adding almost 5mls of water to his balloon it was still leaking very bad with a lot of dark old blood coming out daily. Mom had a feeling that the surgeon who did this procedure really messed something up because it didn't make sense to have so much leaking and bleeding with a simple button replacement.

🍌🍖🥔 🥣 James ate bananas, tried beef jerky Dad gave him and mash potatoes at Beef O Brady's.🍌🍖 He also got new marks on his cheeks from trying different tapes to hold down the oxygen tubing. 🤕

We took it easy on Thursday with PT because Mom had to tape down the button just in case there was a hole in the balloon. There was no way we would go back to St Joe's ever again for anything. The plan would be to either drive to Orlando or Jacksonville. We would be leaving on Saturday for Jacksonville anyways. 

📦 This week Mom attempted to organize the respiratory supplies that we could start giving away. It's one of those things where you think "oh this will be easy" but it ends up becoming a huge project. It started with organizing and counting and writing down reference numbers for each item. Then all the items would need to be posted on Facebook, multiple Facebook groups, and then you have to deal with a bunch of individuals on shipping. Mom just figured it would be a lot easier to just ship a couple of big boxes to one of the nonprofits who handles medical supplies. 

🏘️ On our way to Jacksonville we stopped at a few open houses to check out neighborhood between Orlando and Jacksonville. We made it to Juju's Saturday evening!

🤰🏻 Pregnancy update: One of the main reasons why we needed to turn around and go back to St Joe's is because Mom had an ultrasound appointment on Wednesday morning. With not being able to get into Wolfson's until Wednesday morning Mom would have had to reschedule the appointment. It was very important that the ultrasound was done on Wednesday to compare from the week prior. So Dad was able to be at the hospital Wednesday morning with James and work from James' room. Mom received great news during her appointment. There was a heartbeat of 122 BPM and a gestational sac. She was measuring only one day behind. The doctor was nice enough to offer an ultrasound next week but since we would be out of town we scheduled it for 2 weeks out. It was such a good idea to switch to this new doctor because she definitely listened and understood that there was a lot of anxiety during the first trimester and that any additional ultrasounds would help ease concerns. Even though Mom was officially released from the fertility clinic and needed to transfer to an OB she would still come back for the third ultrasound during week 8. ❤️🤞🏻😁

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com