Staying Put...Day 6 & 7

4/3/23

11:45am

Before today's UPDATE, I need to set a few things straight and address some things:

1. Please do not allude to my children that Tony can or will get addicted to pain pills or say things like, "He's not going to get addicted, right?!" We are literally walking through this day by day. He HAS to be on them. I don't need my older children even AWARE of the dangers of addiction here, and if you REALLY knew Tony, you'd know he absolutely HATES this in every way. Hence him trying to already wean himself off 2 nights ago, and getting himself into an unsafe pain level and nearly into emergency surgery. He hates drugs of any kind. If you're REALLY concerned, pray for him and the time he does come home so that we can safely navigate that.

2. And I can't even believe I have to say this. Do not send me info or studies on his higher risks of pancreatic cancer, dying, etc. I don't need it right now. I'm not going to read anything other than what the doctors ask me to or what my favorite pharmacist gave me on pancreatitis. I've searched Google & WEB MD far too many times with Ezrah's condition, and it causes me nothing but anxiety and all-consuming fear. I simply can NOT go there. That's a FIRM boundary.

3. Tony is not, nor has ever been, an alcoholic. This has been confirmed through the doctors as well, based on the health of his liver and other organs. Yes, alcohol CAN cause this, but it is NOT the case with Tony, which is why they are proactively searching for answers.

We understand you all caring and worrying. But, please think of the words that you use to me, to my adult children, and to my little girls. If you want to speak LIFE and encouragement and support and hope, we will gladly receive that. When the time comes for visitors, please speak positively to him. SPEAK LIFE. I am 1000% in "mama-bear" mode because it is just ME looking after everyone, and I will fight to advocate and protect them and my husband's integrity like there's no tomorrow. We have been given soooooo much love and support, and these instances have been few. But, I feel like these needed to be addressed before it gets out of hand, and I'm sure people are "talking."

Thank you for respecting my rant and my family.

Now, on to today's update:

More things have come up overnight. 

*Tony's heart has become enlarged, and they need to rule out heart failure. He had an ECHO this morning, and the results from that will be all-telling.

*His oxygen levels are declining and there is some fluid in his lungs. One lung still has partial collapse. 

*His white blood cell count is up. His body is fighting. He will be starting antibiotics. 

*He just had a gazillion blood samples taken. They are checking for random viruses that MAY correlate to what Ezrah is dealing with. They are checking auto-immune. Checking antibodies. Checking ALL OF THE THINGS. Doctors have now gone way outside the box here, and we're grateful. (Mold exposure is not likely.)

*Potassium level continues to drop, and fever is still low-grade. (99.5)

*Tony is drinking a Nekter juice/veg mix at the moment. We will meet with a Dietician soon because EVERYONE wants to hold off on the feeding tube until absolutely necessary, but he HAS to try and get 3000 calories in. Today. And from here on out. He is incredibly weak, but he is attempting to get up and walk

*I have no humor or anything cheeky to say. This feels way too dark and all-encompassing.

Simply: PRAY 

(This picture was taken Monday night. AND this is who Tony is.. the hospital bed pics are so hard to see.)

*UPDATES*

4/2/23 at 2:15pm

Tony took a bit of a downward turn last night and his pain went back up to a 10. The CT revealed "necrotizing pancreatitis." Essentially, parts of the pancreas have died. They almost performed an emergency surgery last night but decided to hold off. He is at risk of infection, and so they are closely monitoring and simply trying to manage his pain. One of the doctors said sometimes the pancreas comes back. It's a wait and watch scenario. They want to see if he can tolerate some clear liquids by mouth this afternoon, but they will likely need to do a feeding tube today or tomorrow. The TPN/PICC line is out due to the risk of infection that it could introduce. They still don't know WHY he got this based on his lifestyle. It doesn't add up.

One of his lungs is starting to collapse a bit, so he needs to continue a breathing treatment so that it doesn't get worse. 

He hates the pain meds because he tends to have awful nightmares and hallucinations, but they do bring relief. I think last night he tried to start weaning himself down, and the pain became out of control and unbearable. It's easier to stay on top and manage the pain, but it's quite difficult to bring it down once it has peaked so high.

We are still asking for no visitors at this time to his room. (If you would like to visit with me, please text me. 360-356-0446) I will update if that changes. He is grateful for so many who care about him and knows people mean well. But, he's just not in a frame of mind to converse or listen.

At the moment, we don't have an end in sight. We don't know how long he will be here. But, this is where he is supposed to be. 

Would you pray for our kids? We had a strange man on the back of our property in the woods last night about 20 feet from our property line. Ezrah saw him while taking Luna potty. She asked: "who's there?" And he responded with, "It's me." This was at 4pm. I did not sleep a wink. It is ONE thing after another. My neighbors came over and searched the property high and low and found nothing. What also makes this difficult is that I signed up for Instacart. So, we have a few groceries coming at random times as well as meal deliveries. There's an unusual influx of people.

Luna. My Luna. I am considering boarding Luna in a training facility because she has regressed MAJORLY since I've been up here so much. I have messaged Enzo's, where she takes classes with Ezrah and I, to see if they have a payment plan or sliding scale to board her for their 2 week/full time sessions. I have tears writing this. I love her so much, but the kids aren't able to handle her like I do, and I am sure she's PISSED that I'm not there 24/7 like usual. I need FAVOR there and wisdom to make the right decision because not snuggling that dog at night might be the death of me. I want to be smart financially because of what's coming, and I want to be mindful of Tony's recovery at home. Also...Ezrah's heart. Luna, you guys. I can't even. She's a part of us now.

Amelia turned 18 today, and Tony always sings the loudest of all of us, much to her repulsion. I am just heartbroken that he's not home. I hate all of this.

I broke today when it all became too much. I called a friend who happens to be the best nurse in all of Clark County, and she came and just sat with me. She was here when the doctor came in to go over everything and was able to be another set of ears, which admittedly helped me too! She was able to talk with Tony as our friend and comfort us both. (Thanks, Leesh)

Here are the most pressing prayer requests:

* Can we just skip over Tony's pain, lack of nutrition, and collapsing lung, and just declare absolute miraculous healing!? 

*The hallucinations and nightmares to go to hell where they belong.

*My kids. You guys, they're scared, too. 

*My sweet Luna. I need wisdom here. I hate making this decision without Tony.

* Sleep. We are all so tired. (And having a random creeper on our property is unsettling at best.)

Thank you for being on our team. I know Tony's grateful. We all are.

Until tomorrow ....