Piecing the Jigsaw Puzzle of our Last Month

When Bryan and I were in the hospital the month of February last year, I kept everyone updated through Facebook because it was easier to do a mass post than update everyone individually. I also journaled because I knew I wanted to remember everything at some point. As a result, I had a hodge-podge of posts during that crazy month. Given my innate desire to constantly self-evaluate, I put it all together in a coherent timeline so I could review it.

Cystic Fibrosis sucks in so many ways. Bryan was lucky. He lived way beyond the normal life expectation out of sheer stubbornness. Our story still ended way too soon. I still am trying to figure out where my place is in all this and where I go from here. My hope with these blog posts is that it will help me sort through my feelings, that it will help me heal, and that it may help someone else. It’s long, and full of medical mumbo-jumbo, but there you have it.

The Facebook and journal posts are italicized. 💜

February 4, 2019

And just like that, our pre-transplant testing at Vanderbilt is canceled. 😞

We had to check into the hospital which effectively canceled our plans to drive up to Vanderbilt to go through the process of getting put on the kidney transplant list. We had already gotten so close to being placed on the one at Methodist that we could taste the freedom from dialysis.

February 5, 2019

We originally got these for our road trip to Vanderbilt (because see the first photo) and now that the road trip is no more, they turned into great hospital snacks. I can’t stay out of them. I may need an intervention…

One of the things I loved about this man was that he was on the same wavelength as me when it came to road trips. Rule #1 – When packing for a road trip, it’s an absolute necessity to bring enough snacks to feed an army. Rule #2 – They can’t be healthy. Rule #3 – You can’t have any leftovers by the time you get home.

February 6, 2019

Keep the prayers coming! We’re still here at our unconventional vacation home, drinking all the coffee, eating all the snacks, and watching way too much TV.

February 7, 2019

We’ve been in the hospital since Monday evening. I spend the nights with him and his days are filled with tests, pills, nurses, and pain. A nagging place on his leg that wasn’t responding to antibiotics landed us here. Once we were in a private ER room, they did an ultrasound and found the blood clot. It runs the entire length of his leg; similar to the one he had two years ago the day after his surprise 50th birthday party.
When people ask how Bryan is doing, I’m tempted to ask, How much time do you have? They’ve been pumping him with blood thinner. They were pumping him with a couple of different antibiotics, but that has appeared to stop. They set him up on dialysis every night. It’s hard to tell which is worse, the pain from the dialysis sucking the fluid off of him or the pain from the mysterious sore on his leg. He has a mid-line pic and an IV in the same arm and his arm has swollen up in such a way that would make Popeye proud. They ran an ultrasound on it and thankfully, it came back negative for blood clots. The food is okay. His appetite is off and he has so much going on that it’s hard to pinpoint what’s knocking it out of whack. He’s taking a pain pill to alleviate some of the pain. The doctors come in late in the evenings to check in.
A dermatologist came in last night to pick samples off of both of his legs to send to pathology to be biopsied. More pain. And stitches.
So now we wait. We’re waiting for the biopsy results to come back so we know how to move forward. We’re waiting for the blood clot to go down.
This is just another hurdle in the CF life. We’re going to jump it and keep moving forward. Keep the prayers coming, keep the visits coming, and keep the texts and calls coming. They’re good for Bryan and to be honest, they’re good for me as well.

The dermatologist was such a sweet man and very no-nonsense. He came in and did his thing, barely batting an eye while making pleasant conversation with us.

February 8, 2019

I’m probably the only person in the world who has to watch a video on how to use this thing. After trying to use it with the cap on. 🙄😂

vapoinhaler

The beginning of hospital brain.

I have the utmost respect for nurses, but I’m about five seconds away from giving our nurse whatfor. We’ve had great nurses all week, then I get up here to the hospital room and barely get sat down before she comes in and proceeds to inform us that Bryan needs to eat and she’s not waiting an hour and we need to make this happen. Girl. Don’t. Even.

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That’s one of the problems with the shift changes. Nurses come in who don’t know what’s going on and there’s a few who think bullying through is how to get people to do the things they need them to do. There’s no telling what this poor nurse thought of us.

February 9, 2019

The nurse from hell apparently doesn’t work weekends. I snuck down to the cafe to get the biggest coffee imaginable and breakfast. They have a pretty decent breakfast down here. They had Bryan do five cycles of dialysis yesterday and again last night so he’s been on dialysis for I guess about 16 hours. His potassium (or is it the phosphorus) has been high-about 7 when it’s supposed to be between 3.5 and 5. His blood sugar has been wonky which is pretty typical. His blood pressure has been high which is pretty typical with the dialysis and the blood clot. We didn’t hear anything about the results of the skin biopsy. I don’t know if the doctors come through on the weekends or not. For now, I’m taking my now halfway caffeinated self back up to the room.

coffeeThe Yellow Sock Club. I couldn’t pack my pajamas without including these awesome things. 😎

socks

Anyone who has had a transplant or has a chronic illness that requires multiple hospital stays belongs to the Yellow Sock Club. It’s not a very fancy club, but you do get pairs of awesome yellow socks and while they don’t allow you to slide across the floor Tom Cruise/Risky Business style, they do keep you from falling on your ass on slick floors. So there’s that.

February 10, 2019

Dealing with the doctors surrounding Cystic Fibrosis and all the issues stemming from it is like dealing with a baseball lineup-everyone plays but comes up to bat at different times. Up to bat now is the nephrologist who is currently on vacation in Iceland.

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There are a few advantages to being in the hospital for a week. I finally figured out how to operate the motion-detected ice machine and can dispense water and ice like a pro without a single drop spilled. I figured out the good food in the cafeteria is served at lunch and if you wait long enough in the evenings, you get free food. Contraband is Reese’s Peanut Butter Cups and alcohol. They’re considered evil, but caffeine is thrown around like an Oprah freebie.
I’ve been a little grouchy and Bryan’s been a little grouchy. Some nights I sleep better and some nights he sleeps better. Sometimes I’m talkative and he just wants to sleep. Sometimes he’s talkative and I’m too tired to put a sentence together. I rub his feet and give him professionally dispensed ice and he gives me sweet kisses and that cute little smile.
I’m learning that when someone with a chronic illness is hospitalized, you don’t come out cured. You come out with a game plan for how to move forward and you hold on to the optimism that you are in control of the quality of your life.
We are holding on to that optimism because you only get one life and you get to choose how to live it. We are choosing to live life because God blesses each one of us with one life and the freedom to live it how we see fit. Keep the prayers coming!

Bible Verse

February 13, 2019

Watching the sun rise on Day 9 of our hospital stay with my styrofoam cup of pretty decent coffee. We have a diagnosis that I will gladly share via message, but we also have a plan. We’re switching from peritoneal dialysis to a combination program of hemodialysis and an IV of sodium thiosulfate. His bloodwork came back within the range we needed to have the perma-cath put in this morning sometime. We asked the nurse when they would know the time of the procedure and he responded, “We typically find out when we get the call from downstairs saying, we’re sending the transport team up now.”
Another thing I learned in the hospital. There is no planning your day. Ever.

outside

Pooh

February 14, 2019

Attempt #1 at a perma-cath was a failure because he’s had so many port catheters put in over the years that they can’t get one in his chest. Attempt #2 was supposed to happen earlier this morning, but his nephrologist wanted him to do one more cycle of peritoneal dialysis. Bryan wanted to refuse it because he didn’t want to miss the window for surgery. The result? He missed his window for the surgery and now we’re waiting for them to find time to fit him in. They just didn’t listen. He didn’t have much dinner, no breakfast, no lunch, and we’re hoping his blood sugar holds steady long enough to do this. We’re also hoping it happens quickly because hemodialysis takes 3-4 hours and doing THAT late at night won’t exactly be thrilling. Bryan is getting ready to pinch somebody’s head off after this morning. I’m about ready to pinch somebody’s head off. There’s a difference between refusing treatment because we’re being ornery and refusing treatment because we’re trying to keep things on schedule. Bryan’s spent his entire life dealing with hospitals so he knows a bit how things work when too many people are involved. This is one of those days where there’s just too many roosters in the hen house.

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The perma-cath is in and he’s doing just fine. He’s downstairs doing his first round of hemodialysis and sodium thiosulfate which left me time to wander down to the cafeteria to see what’s for supper. My next hospital discovery: they do it up big for Valentine’s Day:

crab legs

February 15, 2019

So this morning has already been eventful. We discovered what the fire alarm sounds like (apparently some jackwagon on the 4th floor thought it was a great idea to smoke in the bathroom). We also watched in disbelief as the breakfast cart glided right past our room (think of how you felt as a kid when you just missed the ice cream truck) without stopping. Bryan was like, oh hell no! The desk secretary was sweet enough to grab a plate for him while I was downstairs grabbing him some food as well so Bryan got double breakfast today. We haven’t heard when we’ll get to leave, but we’re hoping soon.

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Well, shoot. We’re stuck in here another night. That’ll be 13 nights in the hospital. Boo!

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When the fire alarm goes off (again), what do we do? Drink our hot chocolate, watch our basketball game, calmly eat our chicken, and snooze. As our nurse told us, what else are we going to do? 😂

I originally had a video showing this. You can plainly hear the fire alarm going off while we’re all calmly doing our thing. I didn’t think it was probably a good idea to show it since it was in a hospital. I figured there’s a rule out there somewhere forbidding that.

February 16, 2019

Hemodialysis was scheduled for 9. Dude shows up at 7:30. The nurses are scrambling, trying to get his mountainous pile of morning meds together (it’s always amusing to watch them when they realize just how many there are 😂 ), figure out how they’re going to get breakfast to him, and navigate around who is now in the room: two nurses, the dialysis dude, the PCA, a doctor from the cardiovascular group, and the bed which is now cattywampus. It’s a circus in here and I haven’t even had my coffee yet.

February 17, 2019

One side effect of the hemodialysis is violent nausea. I think all the food he ate yesterday, along with whatever meds that didn’t absorb, are now in blue bags in the garbage. We’re trying to manage pain and figure out how to minimize the nausea. As of right now, we don’t have a discharge date. The board says February 19th which right now would be an awesome birthday present, but we’ll see. The doctors want to get his blood levels regulated, get his swelling down, and get insurance to approve the outpatient sodium thiosulfate IV (a daily dose is almost four months of my salary 😮). Please keep the prayers coming.

February 18, 2019

I didn’t post a Facebook status here, but I did journal:

Bryan dreams about sports. Mainly soccer. He organizes the teams in his mind and coaches the players, gesturing with his hands. Then, he wakes up and glances over at me sheepishly to see if I’m watching. He smiles that silly little smile of his. “I was dreaming.”
Hospitals are shitty places to make final memories. I want us to be able to go sit in a park, on a blanket, making organic conversation that doesn’t involve what pills are working and which ones aren’t; where we can smell the lovely outdoorsy smell of trees, grass, and blanket, not the smell of the things inside him that are slowly killing him. I want to crawl up in the hospital bed with him and snuggle. Just the simple act of snuggling washes away so many cares.
He finally researched calciphylaxis thoroughly enough to know that he may not make it out of this alive.
We’ve been sitting here talking a little bit. While we were watching a basketball game, he gets out his phone and looks a few things up. A few minutes later, he declares, “I bet I have peritonitis.” The cloudy dialysis, the distended belly, the feeling of always being full, the nausea, the slight fever. It makes total sense. The best part? It’s firing him up. Especially after I got a little miffed myself and made the comment that we have gone an entire year and successfully avoided peritonitis only to contract it in the hospital when they did the peritoneal dialysis themselves.

February 19, 2019

Thank you so much for all the birthday wishes. Once we break out of the hospital, I foresee a Muddy’s cupcake in my future to celebrate.
We’re on Day 16 now (I had to go back and count the days). Bryan’s been about the same. The doctors are figuring out the whole fluid retention/blood thinner issues/general pukiness thing. We were hoping to get out of here today which would’ve been an AWESOME birthday, but that’s okay. He’s where he needs to be while they get things figured out.
The nurses who showed up today are the same ones we had towards the beginning of this ordeal which made me deliriously happy. I would’ve hugged them, but that would have been weird.

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February 20, 2019

Bryan now refers to the pain pill as “the one that f**ks up your dreams”.

crazy shit

I have to share my journal post that shows what happened after Bryan made that statement:

Bryan woke up this morning and asked me to check his bag for his car keys. When I said, sure, why? he said he was afraid he had dropped them on the ground after he got out of his car last night. I said, Honey, you didn’t drive last night. You’ve been in the hospital. He responded back saying he had the most vivid dream last night, he dreamed he had gone to Target and left his car and the nurses took it and drove away in it. He still wanted me to check his bag for his car key.

February 21, 2019

So we had a bit of a room change. We’re in ICU. His blood pressure dropped and oxygen levels dropped and they’re trying to figure out what’s going on. On the agenda tomorrow is a broncoscopy and a few other things. For now, he’s stable. I lost my couch so my bed is two chairs pushed together. At least the TV is bigger. Keep the prayers coming, please. We’re going to have an active couple of days.

Would anyone happen to have a lightweight small camping cot I could borrow for the next night or two? ICU doesn’t have anything.

Today was bronchoscopy day. Those of you who know Bryan well know that he has bucked at the prospect of a bronchoscopy for years. He caved this time. They did it and he spent the day resting. He was so lethargic. About 5 this evening, he was sleeping, would quit breathing, and we would have to wake him up and remind him, hey dude, breathing’s kind of important around here. It was similar to sleep apnea. They fitted him with a ventilator. They tried doing the one that doesn’t go down the throat, but the tube that’s pulling the stomach bile out wouldn’t allow for a tight fit so we went with the regular ventilator. He’s sedated and resting comfortably. They’ll check in tomorrow and test him to see if he can breathe on his own. For now, I feel better knowing he’s breathing, knowing that it’s temporary (the ventilator, not the breathing. Lol), and knowing that he’s getting enough rest in order to gear up for the next battle round. Y’all, I cannot express my gratitude and love enough. All the prayers, the calls, the texts, the visits, the little favors, have made this whole process bearable. Keep up the prayers and we’re facing tomorrow with our game face!

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The next couple of days after my birthday were a bit scary. I didn’t journal the process of what initially landed us in the ICU because to be honest, it scared the hell out of me. It was a blur of his numbers dropping, of nurses in and out, of them putting an NG tube in. The first girl couldn’t get it in. They grabbed another girl to do it who was a total angel (they actually all were angels) so we had nurses handing him things, nurses putting things in him, and there I am in the middle of it all with Bryan’s puke bag and providing the NG nurse ninja with an extra set of hands. We finally got the tube in him and got him over to ICU. We never left the ICU. Here’s a bit of my journal entry for the 21st:

Today they bathed him. He’s been in and out of consciousness. [Our associate rector] came by this morning while [his mother] and [his brother] and I were in the conference room while they bathed him. We went back in and [our associate rector] anointed him and prayed over him. We went down to eat while they did the bronchoscopy. [His brother] was impressed with the updated cafeteria. When we came back up, they had finished and he was resting. I went home to shower and to pick up my glasses. When I got back, he was still in and out, but mostly out. I settled into my chair. Suddenly, I noticed his oxygen level dropping. It was dropping pretty quickly, so I grabbed a nurse. She ran in, saw the numbers dropping, hollered for a crash cart, and tried to wake him up. He woke up, she told him to breathe deeply, and he started breathing again. A few minutes later, the same thing happened. Our day nurse, B, said he may have to be put on a ventilator. They brought one that didn’t have to be put down his throat – one that just fit over his face. They couldn’t get it around the tube that was pulling the stomach bile out of his tummy. One of the doctors came in and suggested putting the ventilator with the tube in him and I agreed. He’s now sedated and resting. They’re doing hemodialysis on him. They’re going to try and see if he’ll breathe on his own tomorrow and see if he can have the tube taken out.

February 22, 2019

Day 19 of our hospital stay. The ventilator tube is out! He’s breathing good so apparently it was just the light anesthesia he was given for the bronchoscopy (add that to the growing list of things he’s sensitive to). We haven’t heard anything about the results of the bronchoscopy yet. His white blood count is crazy high. They were able to get a second IV in him so he now has an IV and midline pic in his left arm and an IV in his right. Everyone meet my husband, the human swiss cheese. That nurse was awesome, though. He used an ultrasound to find a place to put the IV.
The main battle right now is getting the lungs back up to par. He has some fungus in them, light pneumonia was mentioned, and when he was getting the ENT line put in (through his nostrils to his tummy), he urped and some of it went into his lungs which is why we wound up in the ICU to begin with. Then, they’ll deal with the blockage in his intestine. There’s lots of other things going on that the doctors seem to find on a daily basis, but we’re just dealing with them as we can.
He’s getting hemodialysis today. He got it last night as well. I can’t be in the same room when they do the procedure and it takes about four hours so I had time to come down to the cafe to grab a bite to eat. The hemodialysis helps to heal the places on his leg and helps with his creatinine levels. I have learned more medical terms in the last two weeks than I have in my entire life.
I’m discovering one of my favorite places to sit and eat in the hospital isn’t in the cafeteria – it’s in the front lobby area. The eating area in the cafeteria is quiet and mundane. Everyone is focused on eating and the reason they’re in a hospital café in the first place. The lobby is active. Everyone walks with a purpose. I see people lugging suitcases, books, pillows, flowers, and food. Doctors and nurses walk more slowly in than they do coming out. Man, you ain’t seen a purposeful walk like the walk of a doctor or nurse trying to get out of the hospital. It’s like they’re afraid they’re going to get stopped by someone before they’re able to escape out of the front door. I totally get that, but the evil person inside of me wants to stop one just for the sheer fun of it and pretend I need to ask them a question (I apologize for nothing). The other reason I like sitting in the front lobby are the couches. My poor tush just sinks down into that couch. There’s a lot of chatter – white noise.
We are hoping. We’re hoping to get stabilized so we can get back into a regular room. We’re hoping we can get healed up enough to go home to continue the process. This is the hope John Sewell had talked about all those years – hope, in spite of the facts.

As always, please keep up the prayers. Pray for healing, pray for both of us to have strength when we think we don’t have enough, pray for us to have peace regardless, and pray for the doctors and nurses who have their hands full with our case, but who continue to shower us with their uplifting attitudes and competent care.

tomorrow

I have a little more to add from a portion of my journal for that day:

Dr. M came in and said his white blood count was in the 3000s rather than the 100s. He’s not sure why. The IV in his right arm blew and they put another one in using an ultrasound. That one blew. They tried again and got it. They gave him a breathing treatment. The pulmonologist came in and said they were going to do a pst where they see if Bryan can breathe on his own. The day nurse used an ultrasound to put in a second IV and found calcification of his blood vessels.

I have little memory of the pst, but I do remember that it seemed to take forever until he got to where they were comfortable enough to let him breathe on his own.

 February 23, 2019

 Day 20: Bryan’s IV in his right arm blew this morning. They did a pic line in his right arm to replace it. I noticed his arm swelling around the blood pressure cuff later and the nurse took it off. She thought the swelling and redness was from the blown IV at first, but I told her about the blood clot and she agreed that it was probably from that. He now has one blood clot in his right arm, two in the left, and the big one in his right leg that was discovered our first night here. The results from the peritoneal dialysis sample showed his white blood count went from the 3000 range to the 900 range which is good even though no one seems to know why it went to 3000 in the first place or how it got to 900. His nose bled a bit today from the ENG line. He also got three breathing treatments to help his lungs out. They’re giving him pain medication tonight at 10 so he can sleep through the night.

Our current little project is the bowel obstruction. They inserted a special dye through the ENG line that apparently not only allows them to see it through an x-ray, but it’s also water-soluble and theoretically is supposed to break up the blockage. They’ve x-rayed him five times now and will be doing it multiple times throughout the night to monitor the progress. After seeing the first x-ray, I can now safely say I know Bryan inside and out.

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Bryan’s stress level at this point was pretty high. Looking back, I wish I had asked them for something to help that. I was completely helpless at this point. I could do nothing to help alleviate his pain or his fears that he kept locked inside. Friends came with food, ate with us, talked with us, and for a while, things seemed somewhat normal. Or as normal as it could possibly be. I had started going home and getting showers, but by this point, I had gone three days with no shower or changing my clothes. One of Bryan’s doctors came by to visit. Another one of his friends came by to visit and we all watched the Memphis Tigers play Wichita State.

February 24, 2019

Coffee is absolutely necessary to keep me from babbling on like a 2-year-old. Especially in this place. #Day21

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It’s been very calm and peaceful this morning which is unusual in a hospital, especially in ICU. Bryan is sleeping and slept pretty well despite x-ray coming in and out. They’re still taking pictures and came by about 15 minutes ago. Our priority now is the bowel obstruction. If we can get that broken up, then we can start getting him back on his regular pills vs the IV method. Once that happens and they can get his blood pressure stabilized, THAT will get us back into our lovely suite complete with couch. We just need his Diva Bowels to quit horsing around and start doing their job. In the meantime, I have enough coffee in my system to crochet a bit. That’s my true stress reliever.

crochet

Before you come up to visit, call or text me first only because he does hemodialysis at all hours, it’s a 3-4 hour process, and no one can be in the room during it (including me). 😜 He’s on it right now so he should be done about 4:30 or 5.

I was able to crochet only a couple of times while we were in the hospital. By the time we were in there for a couple of weeks, my brain had melted. Bryan’s brain had melted. We watched ESPN and I watched movies while he slept. It was all we had the mental capacity to do.

February 25, 2019

Today’s story is about poop. 💩 They had been running x-rays all night, tracking the dye as it traveled through his small intestine. Unfortunately, the dye wasn’t working and instead of moving on through and taking the poop with it, the dye back-pedaled and came out the other way. The general surgeon had been in and out over the last day or so, talking to us about possible surgery. He was reluctant to operate, but now we’re at a point where we’re out of options. On the x-rays of the small intestine, the surgeon saw pockets of stool all over the inside of the small intestine that are just hanging out in true CF style. Bryan is going to have surgery mid-morning about 9-ish. They’re going to discontinue his immunosuppressant medications and his blood thinners in preparation for the surgery. The peritoneal dialysis port will have to be removed during the procedure and they won’t be able to put it back in so we’ll be doing hemodialysis from now on. Then the surgeon is going to literally push the poop into his colon.
The results for the bronchoscopy also came back. They found E. coli present in his lungs which means we now have to don blue gowns and blue gloves before we go into his room. I feel like a Smurf.
This is our 22nd day in the hospital. I lose track of the days. We came in Monday, February 4th. Is my math right?
They come by daily to do rounds. You don’t truly feel like you’re in a fishbowl until you’re in ICU when they do rounds. The nurse in charge explains the case to a large group of nurses, PCAs, and other folks who stare intently into our room and take notes on their tablets. I have to keep myself from waving or doing something silly. It’s so odd – being gawked at as if we were an animal in a zoo.
For the surgery, we’re getting kicked out of our room temporarily. If you come visit, come up to the 2nd floor and the first waiting room you see right across from the elevators is the one we’ll be in. I don’t know how long the surgery will take, but I’ll post updates tomorrow as I get them. I apologize in advance for clogging up the news feed.
Pray, pray, pray! This will be a big surgery. If this is successful, then he will be able to start receiving meds orally and start eating real food. THEN, we’ll be able to move back into our lovely little suite from whence we came. THEN, we can continue the process of hopefully getting well enough to break out of this place.

smurf

Bryan had been gurgly all night and the dye that was back-pedaling was the culprit. It was mixed with some of the stool from his intestine. He threw up quite a bit. It was the first time he had thrown up since being in the ICU. His IV was hurting by this point so one of the nurses fixed that. His Mom came by to sit with him so I could go home to do some laundry, pay bills, and get a quick shower. We found out Bryan was going to lose his peritoneal dialysis catheter so at that point, he was going to have to continue the hemodialysis. His response, “I hate my body.”

February 26, 2019

We’re currently waiting on the surgeon. He’s operating on someone else at the moment and we’re slated for 9:00 to 9:30. The procedure should last about an hour to an hour and a half. Y’all. I am so beyond touched. Not only are you guys posting comments on my updates that you’re praying, I’ve seen people post on their own walls to pray. With this much prayer chatter going on, God is going to do His thing just to shut us all up.

Bryan’s still in surgery. I got a call saying they’re about halfway through, but everything seemed to be going good so far!

He’s out and in recovery! The surgery was a success! In order to avoid the gory details, he was quite literally full of poop (I’m thinking it’ll be a while before I let him live that one down 😜). He will be asleep 3-5 days (yes, you read that right). He’ll be in ICU. Then he’ll start back on a liquid diet and we will go from there one day at a time. UPDATE: My poor brain. His BOWELS will be asleep 3-5 days – not him. 😂

poop

February 27, 2019

The surgeon came in this morning and said everything looked good. He’ll get the stitches out in five days. Bryan’s now on a liquid diet so we’ll test that here in a few minutes. He’s taking his medications orally (yay!) and getting breathing treatments. He has three germs in his lungs that the antibiotics should clear out in a week or two. The NG tube is stopped so I’m hoping that gets taken out here soon. They had him sitting up and swinging his legs off the bed this morning and had him standing briefly with the walker at lunchtime. His blood pressure seems to finally be leveling out a bit. They have him on morphine with a button he can push. We’re still moving forward so I’m hoping we can continue that and not take a bunch of steps backwards again.

February 28, 2019

So [his mother] is sitting with Bryan while I come down to the SS office to get a bit of paperwork done. It’s beyond crowded. I feel like pulling a Mr. Bean.

At this point, we were going to need to get things in place for long-term care until the kidney transplant. I had gone into the SS office and it was a madhouse. I got to a care worker, sat down, he asked me a question, and I fell apart. He was wonderful. He’d been on dialysis himself and shared his story with me. While it wasn’t the same as Bryan’s, it was so nice to hear someone’s happy-ever-after story. I needed that.

Day 25: Today is hemodialysis day. I’m not allowed to be in the ICU room at the hospital so I took the opportunity to run home and get laundry done because I’m out of clothes. It feels very weird to be back in the apartment. It’s almost like it’s not even home. After 25 days in the hospital, the world shrinks a bit. Our time will come when we can get out of the hospital, come home, and build our new routine. Bryan has lived in the moment his whole life so we continue to do that while also hoping we are free from hospital beds, hospital food, and the marking of days by the nurse shift change.

March 1, 2019

Today was a big day. Bryan had a bowel movement, he was propped up in a chair where he could eat Jello and broth, and they removed the NG tube as well as the morphine. He sat in the chair a good bit of the day and is now back in his bed.
I guess I had imagined a different scenario playing out when he was able to poop. I envisioned pooping, smiling, and halfway coherent conversation. Instead, he pooped, he argued, and he’s almost as lethargic as he was when he was on the morphine. He coughs and it hurts his tummy where the stitches are located. I don’t know a whole lot about morphine so maybe it stays in your system for a while?
Nonetheless, he has made excellent progress and we’re that much closer to getting back into a regular room. He was able to take his pills and eat on his own at lunch. His dinner came a little bit ago and he stated he wanted the Jello. He appears to have forgotten all about that request, though. He’s nodded off, buried under warm blankets and pillows. He’ll get his pills shortly after the shift change and hopefully he’ll get those down without me having to be the pill Nazi.

via GIPHY

He had thrown up a bit and it may have been from him drinking too much liquid while he was trying to take his meds. They had done another ultrasound on his arm with the IV as well. He was burping some which was a possible sign of his bowel system waking back up. His pooping was a good thing, but I missed it because I was at the SS office. I was ecstatic when I heard. He was grouchy. I realized then how much I missed conversation. I would have given anything to have talked about anything but the hospital. I also started getting an overpowering urge to talk to people about Bryan’s life.

The ultrasound came back and revealed his right shoulder area had more blood clots.

March 2, 2019

Coffee has been my savior these early mornings.

cat

The hospital does a pretty good job with themes based on current holidays so today I get to enjoy some king cake and coffee. I hate to complain because our situation is just beyond our control, but what goofy, small thing do I miss? Being able to enjoy this king cake on a proper dessert plate and the coffee in a well-loved mug.

king cake

March 3, 2019

We had a bit of a setback last night. He had been taking liquids and sitting up in a chair. Later in the evening, he felt burpy, but still took his meds. About midnight or so, he got gurgly and start throwing up some the liquid and just couldn’t stop. He aspirated again. He’s now intubated, they put the NG tube back in, and he’s sedated.
The plan for today is to check on his lungs and to slowly wean him back off to see if we can get him off the intubator and moving forward again towards getting out of ICU.

When you’re in ICU, you hear Code ___ get announced too many times. Someone has flatlined. When it happened in our ICU unit, we would watch as doctors and nurses would go into high energy mode and pile into the patient’s room to administer CPR, administer paddles, and do whatever it took to keep that person’s soul from drifting off into the netherworld.

Here was what I wrote in my journal later:

Bryan was a bit cranky Saturday evening. He had been taking his pills slowly. He was on a liquid diet, but hadn’t eaten much. He drank plenty of fluids with his pills, though. He didn’t like to be repeatedly reminded to take his pills. We got our night nurse team, R and a PCA. The PCA was the one who administered Bryan’s medication. She kept asking us things that we didn’t know because we just always went along with what the nurses did. She was starting to annoy Bryan and to be honest, she was starting to annoy me as well. She administered the night meds and I got the other nurse to double-check and make sure she had the right ones. I kept trying to get Bryan to take his meds, but I was unusually tired that evening. I left the nurse to it and drifted off to sleep. I woke up to hear the nurse giving him his meds. Then I woke to hear Bryan coughing. I got up to help him out. He kept coughing and started throwing up some. Another nurse gave him some medicine for nausea, but it didn’t seem to help. He continued to throw up and suddenly became unresponsive. He was sitting up and breathing, but he wasn’t responding to me at all. It was as if he were asleep with his eyes open. I called the nurse and said he wasn’t responsive. They came in and tried to get him to say something, but couldn’t. After consulting with Dr. E, they set things up to intubate him and re-insert the NG tube. They called in Dr. W to do the intubation. That whole process took a couple of hours. Things were stabilizing until about 7 this morning. They had discovered he had aspirated and acidic bile had gotten into his lungs. His body started to shut down and he coded. Our room was suddenly filled with people. They couldn’t get a blood pressure reading so they inserted an arterial line. They used his hemodialysis port to put IVs in. I was already upset, but about lost it when they had to do chest compressions. I thought to myself, is this it? I’m not done talking to him yet. We’re not done with our lives together. The whole scenario was unreal. [The PCA], that sweet man, came in to help with the chest compressions and came over to hug me. Another nurse asked me if I was okay and if I needed to step out. Another doctor who was new was a bit overly dramatic and was like a puppy dog in the middle of all his older buddies. He was hopping around, giving orders cheerily and trying to put an IV in. He was mostly ignored. The doctor who came in to assist was very calm and proficient.
Now it’s 8:00pm. They’ve weaned him off of the heart rate meds and his heart is beating on its own. They’ve weaned him off of one blood pressure medication. Tomorrow, they’ll try to wean him off of the ventilator.

He was now almost completely unresponsive.

My journal entry from March 4th:

Overnight, the nurse, woke me up and said Bryan’s eyes weren’t dilating and they were taking him down for a CT scan. The CT scan ruled out a stroke, but he’s been off of the sedation now for 12 hours and there’s very little response. If I massage his feet, he wiggles his toes. They did an EEG as well and we’re waiting to hear back from that. Dr. E is supposed to be by today to talk to us. The next 24 hours are crucial. If Bryan gets taken off the ventilator and breathes on his own, then we’ll let him and then let whatever happens, happen. If he can’t be taken off the ventilator, then we’re going to have to make a very difficult decision. I’m running on automatic today. Bryan never wanted to be on a ventilator.

“I’m a success today because I had a friend who believed in me and I didn’t have the heart to let him down.” ~ Abraham Lincoln

That “him” is Bryan.
I don’t want to lose Bryan. We are just beginning our life together. We have too many things to learn about each other. I haven’t irritated him nearly enough. We haven’t been able to have a house together. We’ve only been able to enjoy Saturday morning breakfasts for a short period of time. There are too many things I want to do with him.

March 5, 2019

We had a bit of a scare after he aspirated on Sunday. He’s still on a ventilator and we’re going to give it a few days to see if he improves based on results from the CT scan and results from the EEG which we haven’t seen yet. I realize that’s a bit vague so I can provide more details via FB Messenger. We’re still here in ICU, just silently waiting and watching and talking smack to Bryan to try and get him to respond. ❤️

This was on Tuesday. It was all I could mentally post on Facebook for everyone. Family and friends started coming by in earnest.

March 6, 2019

A friend shared a set of verses from Philippians with me yesterday. I pulled two verses out that I’m holding closely for the next few days. We’re holding steady at the moment. They’re doing a more extensive EEG today. He’s supposed to have hemodialysis today as well (so if you had planned to come up, let me know first to make sure he’s not still in dialysis). I can provide more details via messenger. As always, keep us in your prayers. Pray for healing, pray for my mental strength as well as the mental strength of our family, pray for quiet peace and confidence for our family as we wait over the next few days.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. ~ Philippians 4:6-7

My journal entry for March 6th:

We’re in a countdown now. A countdown until we pull Bryan off of the ventilator. We’re hoping, in spite of the facts. We’re hoping Bryan wakes up, recognizes who he is and we can start the road to recovery. The facts are that he has brain damage and we’re not clear on how much. The next few days are allowing his body to recover to the extent that it’s going to recover and if there’s no improvement by Sunday, we’re pulling him off of the ventilator. I’m not sure what to expect with this.

March 7, 2019

I am so sorry for the delay-it’s been an emotional afternoon. I am sad to say that Bryan has left us for a better place. We’re setting things up over the next couple of days so if you message me and I don’t respond immediately, that’s why. Message me anyway. Thank you, everyone, for your prayers, your assistance, and your thoughts. He was my best buddy. ❤️

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