DAY 8 & 9

 

*UPDATES*

4/5/23 4:45pm

Tony's white blood cell count went up to the highest level they've been since day 1 back on 3/28. They did a CT scan around noon to get some more info because his body is fighting something. The results from the CT show that more of the pancreas has necrotized. The other organs have not been affected. BUT, that IS a possibility and something they will be monitoring closely. WE NEED PRAYER ON THIS.

He is still on a LOT of various meds, and his pain, although better, is still high. The feeding tube has been placed, and they started nutrition yesterday afternoon. He's tolerating it well, although he seems to be having a mild allergic reaction, possibly to one of the antibiotics. They have since switched to a different one.

His lung function hasn't changed. (still partial collapse)

When doing a lap this afternoon, I noticed several large bruises on the backs of Tony's calves. That bought us an ultrasound to make sure blood clots aren't forming. It is common after this long of a stay.

We understand that Tony has health insurance for 12 weeks from his last day he worked (3/27), and after that, we have to pay for it out of pocket. In talking with the GI doctor, Tony will need to go in at 6 weeks AFTER his stay (at the most sterile B&B in the county) to possibly have portions of the pancreas drained. I have NO idea if that is done outpatient or inpatient. 

Several have asked if we are doing a Go Fund Me or Give Send Go, and I think it's a serious discussion that he and I need to have. We have NO idea what this hospital stay will cost, and our out of pocket costs seem unclear. I just haven't been able to check all those boxes. Nor have I applied for medical leave or found if he's even eligible. I'm overwhelmed. To the Nines. I have not been able to personally thank each of you who has given so generously in SO many ways. But, thank you. I'd be lying if I said I wasn't dealing with fear in many areas.

Ezrah's appointment with rheumatology went well today and she even got to visit Tony for the first time in 9 days. There were not any real RED FLAG indications that she's dealing with an auto-immune disease, but her body is reactive to inflammation, obviously, and we will continue to monitor her. We are STILL waiting for the MRI in regards to the Osteoid Osteoma. Rheumatology did NOT seem to think what she has going on is any correlation to Tony's situation. She has not had significant bone pain in a while. PRAISE. 

I take Luna to be boarded tomorrow. It's so dumb, but would you pray for us about that, too? Ezrah is worried LLG will forget about her. The dear trainer said we could visit and snuggle or bring her home, and I am CERTAIN she and I both will need that, but I don't know how that will work logistically. 

I wish Tony would just be boring. But, clearly, he's not having it. It's been nothing but ups and downs. Head spinning. Head scratching. Hair pulling, madness. 

I. Am. Tired.

*Tony still respectfully asks for no visitors.*

*UPDATES*

4/4/23 1:30PM

*Tony was able to do a small amount of liquids yesterday, but he did struggle keeping certain things down, and those "foods" also increased his pain. They will be administering a feeding tube today. The gastroenterologist isn't messing around. Tony needs calories desperately. He is quite weak and sleeping a LOT. His pain is still high, never lower than a 5 that I've heard/seen. But, usually, it's been around 7+.

 

*Heart failure has been ruled OUT. Thank GOD! (small breaths, small breaths) THAT was a scary one.

*His lung is still partially collapsed. He is still working on a breathing treatment, and I am TRYING to stay on him about trying to get up and do a lap. He sometimes hates me. I'm ok with that.

*Doctors are treating him with a broad spectrum antibiotic, and thankfully, his white blood cells are starting to come back down.

*Tony has a VERY big mountain to climb. Aside from being here indefinitely, his recovery will be the biggest challenge he has ever faced, without a doubt. 

*They want to rule out a very rare but weird virus that actually correlates with what Ezrah has been going through, AND Tony's symptoms. Could they be related? Could Tony be here and going through this to provide answers for EZRAH!? One of the docs said Tony's case is like an episode of "House." Please, God, why are my loves such anomalies? I respect that they have genuinely said, "We don't know. Let's dig deeper." They aren't band-aiding or masking symptoms. They are SEARCHING for answers. This team has been ordained for us. It's clear. 

*Luna. I'm so emotional about this. But, a friend reached out, and I believe we've found a boarding option for her where she will continue to get trained and LUNA-LOVED on. I'm a mess over it. Like, legit tears are streaming down my face as I write this and EVERY update, if I'm honest. (These are NEVER easy to write out. I can't believe this is our reality.) But, it sounds like I can get my Luna "fix" when needed, and the trainer sounds willing to possibly meet me AT the hospital for transport. God knows our hearts and needs, including Luna's. 

*Ezrah. I am taking Ezrah to Randall's Rheumatology for a pre-scheduled appointment tomorrow. We still need answers for her. She's a fighter, and THE KINDEST kid I know. My sweet empath has slept with me every night. Her heart worries. Would you pray for her? Tomorrow is a big day. Please also pray that Tony stays "boring" while I'm in Portland with Ezrah. 

Tony needs miraculous healing. Strength. Normal lung function. Normal heart beats. Lower BP. His pancreas to CALM the heck down. Nutrition. Pain Management. And so much more...

And our family needs their dad. We COVET the prayers.

*We respectfully ask for no visitors at this time. Thank you for honoring Tony's request.