Ezrah JOY's Fight

*UPDATES* 4/30 @6PM DAY 34 Tony's about the same as he was yesterday. I did bust him out again for some air and Vitamin D, and he walked a good portion. He will be going in for procedures #6 & #7 tomorrow. The CT revealed that there is still a lot of fluid on the outer drain. At this point, it may have connected to his left lung and added more fluid to the lung that has already been drained once. The plan is to go in and reposition the drain OR, make it bigger, and drain the lung also. The initial drain just isn't draining as it should be. GI will also go in and remove the stints from his stomach.  At any moment, he is going down for an x-ray where they will have him swallow while they take imaging to make sure something isn't wonky there. He still has just felt super "off" since the potassium was placed in his feeding tube a few days ago. And they need to make sure nothing is "leaking." Tomorrow is sure to be a BIG day. Prayers are appreciated!  *UP

*UPDATES* 4/28 @ 5pm Day 32 The upswing continues! Y'all. Tony ate an egg, 1/2 a sandwich, and some steamed veggies today. We also got to meet with the dietician to set a plan in place for what nutrition will look like at home. HOME! I took him outside again for some natural Vitamin D, and he was able to walk a few laps this afternoon.  Some things are still up in the air based on Tony's labs. So, we don't know exactly when he'll be discharged or if he'll still have the feeding tube, PICC, and IR drain upon discharge. Many things are dependent on what the CT scan on Sunday shows. But, he's staying in place at least for another few days. There is still a chance they'll need to go in and drain again. We also met with the occupational therapist to see what accommodations we might need at home so he can get around and maneuver safely. I truly think he'll be ok. It's just gonna take time to regain the weight and muscle. He still tires VERY easily. (Agains

*UPDATES* 4/26 @ 3pm Day #30 Although I will never ever accept the "time estimates" of surgeries that these (lying) doctors give me... going overtime in true Tony fashion, he came out of surgery #4 swimmingly. There were no bionic arms (or calves) placed in procedure like he'd hoped. However, he did come to asking for cooked potatoes. Specifically, "cooked potatoes in stew." And he referenced Dr. Sam as "Samwise-Gamgee."  All that to say, I feel an upswing is on the horizon. How can there NOT be? Although we won't REALLY know for a few hours, I'm declaring it now! He's resting peacefully back in his Sterile B&B. 💜  *UPDATES* 4/25 @ 4pm Day 29 Hospital time is like the matrix. The days blur together. The hours can be PAINFULLY slow. Or delusionally quick. We've both been victims to the delirium. I often have to look back and check what day we're on.  29, now. 29 straight hospital days! Who's counting? Me.  And what day IS it

*UPDATES* 4/24 @9PM Day 28 Tony went down with Interventional Radiology at 1pm to fix the pseudoaneurysm. He was down there for 8 and a half hours. I don't have a lot of info right now, other than they treated the pseudoaneurysm and also placed a stint.  He's in a lot of pain, and the nausea just will not let up. We are finally settled at 9:20pm. He is supposed to go in tomorrow around 12pm for another drain with GI. He does go completely under anesthesia for that, and we'd love prayer.  This is just a LOT. Unrelenting pain for 28 days is taking a toll. We need prayer warriors.    *UPDATES* 4/23 @ 7pm Day 27 *CT from this afternoon found a pseudo aneurysm on his spleen. He is going down ASAP to Interventional Radiology to have coils placed so it doesn't burst and cause internal bleeding.  *edit* 9pm Because he has blood thinners in his system from this morning, they are holding off and will go in early morning when it is safer to do so. (This was today's update. I t

  *UPDATES* 4/22/23 1:15PM DAY 26 Tony's having a rough day. His stomach is NOT appreciating the clears, and he feels miserable. His lung has further collapsed, and the fluid is increasing on the left side. They are going in to drain the lung at 1:30pm and will culture to see if there's an infection there also. They may end up putting a tube in as well. He's been asleep most of today. We really hoped today would be better, but so far, he's just not turned a corner.  We are asking for prayers.  We need turn-around. *UPDATES* 4/21/23 @5:45PM LONGEST DAY EVER. Tony went in this morning around 10:15am to have IR place the drainage tube on the outside of his stomach.  Then, at 12:15 p.m., he went in with GI to have the stints placed. They were able to drain an entire container. (see picture of EMPTY container. You're welcome.) The drainage on his abdomen has a bag attached to it, and it has also started to collect quite a bit of YUCK. (No picture. You're welcome.) He

*This is Tony. Healthy Tony. THIS is who we are praying for. * *UPDATES* 4/20/23 4:30pm Day 24 The CT scan showed that Tony is a good candidate to begin the draining tomorrow. However, things have changed. He now has a 4th pocket of fluid much lower in the abdomen that will require a drain through the abdomen wall itself. Also, initially, they were hopeful that they could go in through the stomach with one stint. It now appears the collections have grown slightly in size but have separated. Therefore, a 2nd stint will be placed. (Both stints will be placed through the stomach lining.) They will drain and remove as much of the dead tissue as possible and culture it. And then, it's VERY likely that the team will have to go BACK in endoscopically three days later to drain and collect again. There is a chance they will have to go in multiple times. The stints will remain in for a few weeks, and then we will have to come back to have them removed in an outpatient setting. This is a comp

*UPDATES* 4/19/23 @6:00pm Day #23 Quiet day today. Tony got good, restful sleep last night, and started some light physical therapy today.  Pain and Nausea are still there but managed enough that he could do some walking today. It's not without max effort on his part. CT Scan is tomorrow. If all systems are a "go" and it's the SAFEST possible scenario, the team will do the draining either Friday, Monday, or Tuesday. *UPDATES* 4/18/23 @8:00pm Day 22 Today was another not-so-great day. Tony's nausea is at its highest, which also increases the pain. Although the pain is better managed, the nausea isn't. We’re over here taking some deep breaths of Peppermint & AromaEase essential oils, which are also helping to expand his lungs. The nurses actually have these little oil filled tags you can attach to the gown. We're doing whatever we can to control it. GI has ordered the CT scan on Thursday with HOPES to do the drainage procedure endoscopically on Friday. L

*UPDATES* 4/17/23 5:00pm Day 21 Tony's white blood cells are starting to come down again, and his pain has been better managed today. He was able to walk a bit this morning, and I was able to help him shower. But, by this afternoon, his energy is quite low. They have YET to turn on his feeding tube (because they can't seem to locate a pump!). The food is here, and the pump is not. He's had ZERO nutrition in over 48 hours.  He's stable. But, weak. We need STABLE to stay.  It looks like the CT will be tomorrow, and that will be a big tell-all for when the procedure can happen and IF there is anything new or alarming going on.  Please, please continue praying. If your church has a prayer chain, add him to it. You have my permission. The more people on the battlefield with us, the better. If I've learned one thing during these last 21 days, it's that he has good days and very bad days. It's the constant ebb and flow of this wild roller coaster ride. We need more

*UPDATES* 4/15/23 7:30PM At around 5 p.m., we got word that a bed had become available, and Tony was transported by ambulance to OHSU. We arrived at 7:15pm. This by no means implies that he is out of the woods. PLEASE continue praying for him. PLEASE. 🙏 Now, more than ever. Pray for Doctor Sheppard and his team that will take over. I have soooo many things running through my head on loop. I'm barely holding it together. Today was a REALLY hard, scary day. Pray for all of us. But, mostly, for TONY. He is in the battle of his life. 

*UPDATES* 4/15/23 10:30AM We need a bed to open at OHSU. This is THE prayer.  Tony took another turn last night.  He is stable, but things seem to be progressing in the wrong direction. He will have a good night/day and then a bad night/day. Last night was a bad night. Please continue praying.  "PRAYER is not preparation FOR the battle. Prayer IS the battle."  And Tony is in BATTLE.  *UPDATES* 4/14/23 2:40pm Day 18 OHSU accepted Tony as a transfer last night, which is rare, and why we were told we would most likely end up in Seattle. He won't be transported until a bed has opened up. It could be in 20 minutes, it could be in several hours, it could be at 3am. We are at their mercy. We simply wait...and wait. Tony is stable, but the pain is back. They're managing it well, and he's on blood thinners because of the clot/s. The kids all came up last night, and we spent time as a family and prayed over him. Matilda took him for a "lap." We need continued pray

 *UPDATES* 4/13/23 4pm *EDIT* We just heard that OHSU has accepted him. We are waiting for a bed to open and they will transport Tony. HUGE turn. Tony is being transferred ASAP. The pancreas has further necrotized and is causing blood clots/blockage to his spleen and liver. Surgery is required.  This is all the info I have. He will likely transfer to Seattle because it is not a procedure that this hospital can handle.  All hands on deck. He needs prayer. And we need a bed to open up and a competent surgeon ready to go STAT.

*UPDATES* 4/12/23 3:30pm Dr. Cymorek, the gastroenterologist (who is PHENOMENAL), put a ka-botch on Tony starting clears today because he feels he's just not there yet. He'd like to see him have ONE more day of minimal pain before starting to supplement his feeding tube. Personally, I like his conservative approach. Other docs have wanted to "push" the eating process, but it has ALWAYS set Tony back. ALWAYS.  Tony's weak. He has very little energy and is so very tired. I made him play Farkle with me today, AND keep the score. (*cough* I let him win *cough*) It took everything out of him, and he needed a nap right away. He's got a long way to go to get back to his "fighting weight." Dr. Cymorek is going to send PT in today to see if he can start some exercises in here (although limited by the tubes/IV pole).  He has completely weaned off alllll pain medicine, and they did finally take him off IV fluids as he IS able to tolerate water. If all systems a

*UPDATES* 4/10/23 @7PM Day #14 I've been with Tony for more than half my life. This year is 23 years married to THE most incredible human I've ever known. Over the years, my identity has become more "mom/wife" and a little less, "Becky." It's an honor to have that privilege. But, with that identity comes intuition, a "spidey-sense" of knowing my people. And, I can honestly say, Tony is struggling. He has been so tired the last two days. Laps just aren't happening as frequently, and I think he's just so done. He's tired of the constant pain. He's frustrated that his body isn't doing what he wants. This has been so taxing in every way. And...I worry. I worry about his mental health AND his physical state. His white blood cell count has come down. His platelets are still high. His Lipase is still well out of normal range. He did say that food "smelled good" today, whereas before the smell was repulsive. It's a fin

*UPDATES* 4/8/23 6PM Not much has changed since yesterday, so I don't have a big update. Tony's stable. His pain level was the best today thus far. However, he is staying on top of pain meds and not letting it get out of control. He still is not able to eat by mouth. He's 100% nourished by the feeding tube.  They don't want to expose Tony unnecessarily to more radiation, so they have not checked if more of the pancreas has necrotized. His pain level will be their guide and his various labs that are continuously ALL OVER THE PLACE. There is no plan to drain his lungs or the extra fluid that's surrounding his organs. It's truly "wait and watch" at this point.  They're watching his other organs, his lung and, of course, the pancreas. He has developed a rash on his back, and they're not sure if it's a heat rash or reaction to the antibiotics. (Which are being administered for any infection.) He's working on more "laps" to help his

  *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 form

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 wha