Update 5-11-15

It's been quite a while since I've written an update about Rick. We have had so many setbacks that I felt like getting my hopes up would be setting us up for disappointment. I think today was a good day. A very good day in fact! Rick had another drain removed and is down to only 1 left!! There's still pain but that decreases as the drains are removed. All blood tests have just about come back into normal range. Now we need to focus on gaining weight, stamina and energy. I've been cooking to help him gain weight but the downside is, I have too!! Makes me a little nuts at times lol. I'm hoping the appetite comes back soon because I'm sure he would feel so much better. We are hoping that he can go back to work in a few weeks, even if it's just part time to start. I'm sure getting back into a routine will help in recovery also! It reminds me of when I tell myself I'm going to start exercising or running. It sucks getting started when you're not motivated but after you do it, you feel a million times better! It's just forcing yourself to find the energy and motivation to do it!! 

This has been the roughest 6 months of our marriage. I don't even think deployment was this difficult! Seeing the person you love sick and in so much pain and being helpless and unable to do anything is absolutely horrible. My faith in everything I hold dear has been tested but I still hold on, even if it's by just a thread. I will not give up even when I cannot see the future. There is always hope and love.

Update 4-5-15

We were hoping that today would be our 1st. whole day in our new house. Well it started off ok until Rick said he felt warm and I took his temp and it was well over 101 again like it was on Friday. His drains are draining more blood than they should be and they are leaking around the base (a lot). I have needed to change his dressings every 2 hours which is too much!! So long story short, we are back at the ER downtown (CC) to see what's up. I have done everything I can, just like I was instructed to do but I'm not a dr. or nurse. I refuse to take chances and wait it out. The dr's have said that up to 40% of people with Rick's extreme pancreatitis die. We don't like those odds so I will do whatever it takes even if that means we have to drive to the ER just to be told it's nothing serious. I guess we will find out in the next few hours what they are going to do. 

3-31-15

Another day, another procedure! Rick had a drain come out before he was discharged and since he's been home, it's been draining into a pouch. I keep track of how much each drain us discharging and log it and then I flush all the lines. There are 2 drains and a pouch on the right and 1 drain on the left. They took out 1 on the left today so that's a step in the right direction!! The next 24-48 hrs is critical to make sure he doesn't get septic. They considered keeping him but I convinced them that he was doing well at home and they could tell that I was able to take care of everything myself. His appetite is great and I'm trying to "fatten" him up since he's lost about 60lbs! It's kinda hard to do since his diet is so limited because of the diabetes and the stent from his stomach to pancreas. I know once all the "bad stuff" finally drains and they can remove the drains, he will feel so much better, and so will I. Today since he was able to come home and didn't have to stay was actually the 1st day  I felt like things were starting to slowly get better. Like we had somehow turned a corner. I just wish he didn't look so frail. I wish I could make him well every day. I pray and hope and will him back to health but it's just taking so long. I'm hoping the new house will also help keep his spirits up. I know it's hard on him not being able to do anything to help with the move but it also shows him how many people do truly care to take time from their busy schedules to help us out. We are beyond grateful and I cannot express how much we appreciate everyone that is going to help!! Thank you!!!

He's home....3-25-15

I haven't posted an update in a few days. I didn't want to jinx us and say anything too soon. The last time he came home, it was only literally 5 minutes and then back in for 6 days. I'm happy to say he's been home for a few days now. The nurses come over to do blood draws for blood work. They are monitoring his biliruben and alkaline phosphotate levels. They are important when the GI system is involved and there could be issues with liver function or blockage in the bile duct. Right now they are elevated which could be from the pancreas or blockage. They are monitoring it for now. If it doesn't get better or gets worse, they may add a drain into his liver. Right now he has 3 drains and 2 external pouches. I flush them and record the output. The drain sights cause some pain and discomfort but we are managing that with meds. Rick has lost about 50 lbs and I'm doing everything I can to "fatten" him back up but that's a bit tough with his limited diet due to the diabetes and low fiber/fat diet.

Every day brings new hope and new fears. We are learning more about ourselves and about each other. I look at him so frail and my momma bear instinct makes my heart beat stronger and faster. I want to do anything I can to protect him, heal him and love him back to the healthy man, partner and love he was before this nightmare began. Thank you again for all your care, love, prayers and support. The journey to wellness, health and life continues!!

Janet~

3-21-15

I made it to the hospital early enough to talk to the Dr.'s this morning. They are going to replace the drain that came out with a larger size. Again I got the same, "We will see." and "Lets wait and see what his numbers are". Rick is very tired today and just generally feeling yucky. I wish he could come home and rest in his own bed for awhile.

Cleveland Clinic 3-20-15

I'd like to first thank everyone for their kind words of encouragement and prayers. It means so much to us. I post updates about Rick's condition on my Facebook because it's too difficult to call and text everyone who asks. If you feel it's too often or get tired of seeing them, I will not be offended if you unfriend or unfollow me.

My time is consumed with Rick's care and my days are scheduled around that. This is unfortunately a day to day process which is difficult to accept for a control freak like myself. There are times I get overwhelmed which I then get upset at myself about because Rick has it so much worse. He's the 1 in the hospital bed. He's the 1 that's getting poke, prodded, pushed on and sedated, sick and in pain. I'm glad that he's resting today and sleeping. We thought things were looking up when they let him come home. That was until we got home and he pulled out 1 of his drains and we had to go back. He was out for literally home for 5 minutes and then we had to take him back. 

The Dr.'s just don't have answers. Right now his bilirubin is up and so is his alkaline phosphotate which has to do with his liver. They had gone down and there has been no fever or other symptoms of liver problems. (jaundice, itching) They used a scope to do an internal ultrasound to see if they needed to do an ERCP on Monday and found it was not necessary. Yesterday they tried to do it again because his labs went up again but they couldn't get in far enough to put in the stent into his bile duct due to swelling. I try to ask questions and do research online which leads me to more questions. He's already had 7 drains put in, 3 were replaced due to being pulled out. He has blood clots which they added filters. I just spoke with the PA and she is going to check to see if they can start using his left arm again for blood draws and IV's. His poor right arm is just beat up. He has had a stent placed between his stomach and pancreas to help drain the pancreas. He's gotten thrush from so many antibiotics which led to an additional medication. He just got back from having an ultra sound and CT. They need to see if the drains are still in proper placement. Now I get to wait for those tests and hope and pray it's not organ failure.