Day 4 & 5

*UPDATES*

4/1/23 2:30pm

Tony is currently drinking contrast and will be going down for a CT scan this afternoon to see if there is a possible “pseudo cyst” on the pancreas. His pain is still high, and he is not eating. They did an x-ray this morning of his digestive system, and there is no blockage. Because he has gone 5 days without food, they will most likely be administering a PICC line to try and stop the loss of muscle mass OR insert a feeding tube. (Neither are great scenarios, however, there is less risk with a feeding tube. We’re going to go with what the doctors think is best.) Folks, he’s not going anywhere soon. We’re here for the long-haul. I soooo wish this was an April Fool’s joke. 

IF Tony has a cyst, they will do a procedure to go in and drain it. We met with a gastroenterologist who thinks it’s unlikely, but not out of the question. The CT will tell us more. The Gastro doc was super helpful in answering more questions. Tony does not fit the bill of what they usually see in pancreatitis patients, so there has to be something more going on. We appreciate them digging for more answers. Thankfully, Tony is able to answer their questions a little bit better today. I notice he gets a little confused or repeats himself. 

**This is where I need to be the bad guy. He really struggles with visitors. Please don’t stop by unannounced, and PLEASE don’t stay for an extended period of time. Would you text me first if you’d like to visit? (My number is 360-356-0446.) We know so many of you love him and want to see him well, but he feels awful and really just wants to sleep. It is so hard for him to try and listen and focus through the pain, and he’s just not up for the small talk. I am trying to balance being here and back home, and if I don’t respond, please respect that the lack of response doesn’t mean, “please come in.” It means I’m home with the kids and filling THEIR tanks. Aside from him being in so much pain…the LAST thing we need is him getting sick or exposed unnecessarily to an onslaught of germs from visitors.

His labs are all over. White blood cells, potassium, and blood pressure are all specific things to be praying for, as well as the CT scan results, of course. Lipase levels HAVE come down into “normal” range. 

He is worried about things out of our control. (The hospital bill & finances with missing work indefinitely). But, we got some answers today with HR in regards to his insurance plan, and he has some PTO he can take. He will be missing next week of work also. I am trying to tell him it doesn’t matter. Regardless of the outcome, the cost, or the finances, he HAS to be here. He is soooo sick. We have to trust that it will all work out. He needs to focus on getting better, not the “worries” out of his control. To those who have sent us cash donations. I can NEVER thank each of you enough. We are eternally grateful. It is REALLY helping!

Meals. Thank you soooo much. I could not have done this without knowing the kids are being fed and nourished. I do want to say that we really only need meals that serve 4. We do have a big family, but Elijah is away house sitting, the little girls don’t eat a ton, and I am getting my fair share of food while here at the hospital thanks to the Door Dash donations. We are just so grateful. Truly. 

Until tomorrow…. 

(Which happens to be Amelia’s 18th BIRTHDAY!!)

 *UPDATES*

3/31/23 3:00pm

*Well, it appears Tony just loves the cozy bed and amazing service here so much that he bought himself another night or so at the most Sterile B&B in the county, also known as THE HOSPITAL.

His pain is still high. (8 on the pain scale, but lower on drugs.) He's in and out of sleep a LOT. He is more coherent today. Talking (and listening) are still really hard for him. It's just draining. He was able to shower yesterday with some assistance, and this morning, he did a whole LAP around the nurse's station. That absolutely drained him, and he immediately went back to sleep. He is incredibly weak. He doesn't want liquids or anything like jello, despite the push from Dr. Fuke to introduce those things. He has been on an IV drip since we got here. He obviously can NOT go home until he's drinking clear liquids, off the IV, off the IV pain meds, and the pain is under control. (I think the lowest it has been is a 5 on meds)

*He is fighting a fever and CRAZY dreams. They may order an x-ray to make sure he doesn't have any blockage in his intestines. He's on a couple of different pain meds today that they're able to administer in tandem. When one wears off, the other IS given in hopes of bridging the pain gap. He has not been throwing up since yesterday afternoon. His stomach is still quite descended, and we really need to get things "moving." The pain meds help the pain, but do the opposite as far as digestion. So far, no other "intervention" has worked there.

I'm really trying to protect Tony's integrity here. But, it is what it is.

*l know he wants out of here. But, the reality is.. I am not going to be able to help him at home like they can here, and so I don't want him to try and push that because of the cost that is accruing. I'm sure he's thinking about that in the back of his mind. But, home is loud, crazy, LUNA-LOVED, and we have a lot of stairs. This is where he needs to be. Plus, when he finds out that Luna ate our comforter, he won't be happy. Luna is protesting. Can anyone blame her?

*The kids are doing as well as can be expected. I'm sure they're doing a lot of screen time. I KNOW they're NOT doing a lot of "hey, let's take Luna out and PLAY time." They technically ARE allowed to visit, but I think it would scare the little girls to see Tony like this, and I'm not sure he'd be able to talk with them much anyway. (He has mentioned several times that "listening" is hard? (Maybe it's a hint for ME.. did I mention l'm the chatty one of us? Shocker. WORDY NELSON AT YOUR SERVICE.)

*Tony has been frustrated with some of the nurses. Just little things I have noticed also: they'll put the urinal on the counter WAY out of reach where he has to get up to try and get it. He's super unsteady, so that seems like a fall-risk waiting to happen. They will often put his water at the farthest end of the tray where he can't reach it. One nurse finally figured out that if they administer the pain med through further up the IV rather than directly in his arm and push it in SLOWLY, it doesn't make him throw up. But, he's had to ask nearly every time for them to do it that way. Little things like that. He wishes they would explain things. He was asked today, "Do you want a potassium tablet?" With zero explanation of WHY he may want that. He basically NEEDS the tablet to prevent his muscles from cramping, including his heart, because he is very low in his potassium levels. But Tony doesn't understand medical things, and the pain, of course, has exasperated all of this. But I have noticed it, too. I feel like my being here helps to ask those questions when I can see that he is confused. Also, the 2 doctors he's seen have told him the opposite in regards to trying to eat/drink. One doc says total rest, and the other says, "If you want out of here, try to eat." Here's the bottom line: Neither of his want him to be discharged and then BACK the next day. It seems like he is nowhere NEAR ready for ANY liquid food/concoction.

*I promise our family is NEVER this needy or in such turmoil. It all feels like so much. Since 2019, it has literally been one thing after another. We've always been healthy, active, and NORMAL people. I know that no one is judging us. But, gah, we don't WANT this attention. We don't "WANT" any of this. For some reason, unbeknownst to us, we're chosen to endure this. So, we take it one day at a time, the good, the bad, the impossibly hard. We rally, we cling, we pray, and we walk through the fires as best we can. I am grateful to each of you reading this.. as wordy as I am, I struggle to find the right words to express the magnitude of thanks I feel. The meals and donations have been a tremendous relief. Ezrah goes in next week to Rheumatology, and I've got a dear nurse friend to accompany me so that Tony can rest either here or at home. You guys are holding me up. 😭 Thank YOU!

Until tomorrow...