Joey's Updates

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Joey's Updates Joey is my son who has been battling what is being called one of the worst cases of pancreatitis.

09/09/2021

Joey is kicking butt and doing awesome! He got the drains removed from his surgery and they are stopping his TPN ( food by iv) tonight which are the two biggest last steps to getting him home they just need to get a baseline on his blood sugars off TPN and just eating so going home is in sight but still taking things one day at a time 😊🥰

05/09/2021

Back at the hospital with Joe. He's made huge strides in the past 2 days and is doing so well. Hopefully we will be out of here by the end of the week or so. The biggest issues that there is is he has this fever that comes and goes every single test they have ran comes back negative or looks perfect.

04/09/2021

Sorry for the lack of updates but not much has been going on everything has been a waiting game of just waiting for his body to heal. Lots of sleep (when he can) and just sitting around. One thing that will never stop sometimes being annoying is the huge difference between how one nurse will be compared to another but I think that also goes hand in hand with how often they work with your child. Some work with Joey more know him well and know exactly what works for him so they know AB& C will help him the quickest to make him more comfortable and works well while others like his nurse tonight while absolutely wonderful would rather try something completely different before they finally get to AB&C. It can get frustrating when your kid knows and advocates for himself what he knows works and they want to try something completely different. Like it's almost 3am he can't sleep because he has anxiety at night he knows exactly what meds work for him to relax him to get some sleep but the nurse wants him to try reading or watching some relaxing videos, I get it less meds better but he's still in the middle of all this he knows what works and it's not reading at 3am when surgery will be in at 530 waking him up to finally take the tube out of his nose and that he is worried about that it will hurt. Give the kid the ativan he is prescribed by his Dr's here as needed and let him sleep.

30/08/2021

Joey's on a mission today to get moving 🚶‍♂️first thing he asked today was can I get out of bed and sit in a chair. He's kicking butt!

29/08/2021

After some antibiotics Joey's fever broke and so far every test has come back negative so now we just have to wait for his blood culture's to come back. But since everything catchy has been neg we got moved yet again to another room but it's actually pretty nice and one that had just been redone :). Joey is completely kicking butt despite the lack of sleep. He's sitting up in a recliner kinda snoozing his incision is healing really well, and he's in very little pain, except when he coughs but I have given him the handy tip I learned of having him hold a pillow to his stomach so it doesn't hurt as much (yay for c sections) I also joked with him that now he knows what I willingly went through 3 times lol
Now to joke with him on what his super hero name could be with the big L on his chest lol

29/08/2021

Well we have reached a new level of hell.... Joey has some kind of infection so we are now quarantined in the smallest room on the picu floor until they figure out what it is. I am not allowed to leave the room ( walk-in closet with a window ) for any reason at all. Yay 😬

28/08/2021

Yay we have Joey sitting up with no pain :) lil steps

26/08/2021

Tomorrow is Joey's surgery and I am a bottle of nerves. I'm ready for hopefully this to be the final thing that helps him but terrified of how complicated this surgery is.

23/08/2021

Counting down to Friday is not fun. There are some serious dangers in play. But at the same time I want this over. I'm gonna be a wreck on Friday hours of surgery 6 if all goes well thankfully Matt talked to the hospital and can can stay with me.

Joey got a pancreas stuffed animal which he has lovingly name "the as***le" lmfao
21/08/2021

Joey got a pancreas stuffed animal which he has lovingly name "the as***le" lmfao

19/08/2021

Yay so Joey was luckily an easy fix his bandages just needed to be redone and came lose nothing big at all. He should be on his way home soon. Just about 1 week until his big surgery, that one will be about 6 hrs long.

19/08/2021

Joey is headed back to the Er * Warning some TMI ICKY medical stuff *
and if any of my nurse friends have any idea please toss in your input. His port draining his cyst something isn't right. He was supposed to see his Dr today but it got canceled because of an emergency surgery. Last night I noticed it was draining weird the color was off and the smell was awful. I thought well they can fix it at his appt tomorrow and I'm not going to screw around with it. Since his appt was canceled I flushed it and water started pouring out I also noticed some of the liquid from his bag on his leg. I'm hoping this is a easy drainage and bandage fix and it somehow didn't get moved which would mean another procedure to go in and fix it. As far as I know it hasn't been pulled or moved. Nothing can ever be easy... poor kiddo

18/08/2021

Trying to wake up... I hardly even sleep since Joey came home for 3 weeks. It's constant stress of did I do everything right with his meds and iv lines.
Couple of busy days coming up, today hair cut so Joey doesn't loose like a fluffy mop of hair going and and I don't have to listen to him complain while he's in the hospital his hair is too long.
Tomorrow he has a Dr's appt with his surgery team. Then sometime this coming week he has to have a specialized CT done.

Joey's spleen is being removed... so we bought him a new one... his new pancreas should be here soon hehe tying to keep ...
17/08/2021

Joey's spleen is being removed... so we bought him a new one... his new pancreas should be here soon hehe tying to keep smiling and laughing through all this

16/08/2021

HI all welcome to Joey's page where I will be keeping everyone updated on everything Joey. His big surgery to hopefully correct everything is Aug 27th leading up to that day I'm sure I will have tons of updates as well as during and after. He is looking at a minimum of a 2 week stay after his surgery but it could be longer. I'm going to post my PayPal information just once and a Facebook funding but please don't feel obligated to help but every cent does help a lot. I am so beyond thankful for everyone who has supported us with donations, love, good thoughts and prayers over the past 2 summers. Now let's just hope that this doesn't turn into another 80 day stay and pray this will be the final thing that will hopefully heal him for good. Ty love you all
💜Jackie💜

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