After the initial shock of November 18th started to wear off, we started moving into a rhythm. A new type of normal.
Day by day, there were little improvements. Things that you normally wouldn't think about as novelties.
Aaron got the tube taken out of his nose and we felt comfortable letting Zach into the room to see his dad. We didn't want Zach to pull on any of Aaron's tubes...especially that one that went down Aaron's nose into his stomach.
The first time Zach when to visit his dad in the hospital, he was very timid. Which wasn't a huge surprise since he didn't have dad at home anymore. Mom was keeping odd hours and suddenly he was spending his days with Nana and Poppop (Aaron's parents). Zach stayed away from Aaron's bed but spent the rest of the time play in the room and that lifted Aaron's spirits.
We would wake up in the mornings, get dressed, and head to the hospital. Stay for 1 to 2 hours until it was time for wound change. Then we would go home. Aaron didn't want us anywhere near the room for wound change. He didn't want us to hear.
Every day the wound had to be redressed. To refresh your memory, it was the softball sized hole in Aaron's side that had to be packed full with gauze. All of the stuffing would come out and new would be put back in. With just enough morphine to take the edge off. Aaron doesn't like to talk about it. Especially the first month of wound change.
We would go home and nap and then I would go back over and stay until either it was time to put Zach to be at 6:30 then spend the rest of the night at the hospital or I would just stay with Aaron till midnight. It was rough hours on everybody.
But love was pouring in from all around us. Aaron's childhood friend Ray and his sweet wife, Ashley, sent Aaron a care package filled with goodies. Aaron's Aunt and Uncle sent flowers to brighten up Aaron's room while still maintaining a very manly aesthetic.
People that Aaron worked with were concerned and signed up to bring food to us and came to visit him in the hospital. Members of our Church wanted to bring us food. I was so shocked, because we hadn't been in the area that long but people were so concerned and caring. We felt so loved and looked after.
All spare you the details of how I feel like our relationship grew stronger through all of this and how we both grew closer to the Savoir and our testimonies of the power of the Atonement brought up strength. Maybe for another blog post or we'll just keep it as a sacred memory. We learned myriad lessons about love, relationships, ourselves, and Christ's sacrifice for us. In many ways, it was a very sacred time for us.
I also learned a bunch of new medical things. I learned what NPO means (nil per os- nothing by mouth). I found out that in this hospital, IVs in the hand have to be changed every 3 days. I learned that PICC lines are better for long term use. I learned that nurses are some of the busiest people in the world. I learned most American's are deficent in magnesium but that a general complaint is that it burns going in through the IV. Aaron learned that first hand.
Aaron got a PICC line, which made it easier to get him all of his drugs with just one IV pole. That made it so that he could start to move around and only need to have one other IV in his hand.
This was the first time Zach got to see Aaron sit in a chair.
This was the closest that Zach had gotten to Aaron since the surgery. We bribed Zach over with a book that quacks.
It's hard to remember when Aaron hit which milestones. Food was slowly reintroduced to Aaron once they did the CT scan and couldn't find any evidence that his intestines lead into the abscess. Aaron REALLY wanted to bypass the need for a cane or a walker...which is kind of crazy since he was missing the....right...side...of himself. But walking...that doesn't come first. First came doing leg exercises in bed. He had to learn to control his right leg and get the muscles necessary to move it.
Then came standing, turning and sitting down into a chair. That was a processes since Aaron couldn't get himself out of the bed. They had a sheet under him for wrapping around Aaron in such a way as to pull him up and turn him gently. After he started to get the hang of standing and immediately sitting back down, we worked on standing. He would stand and hold onto the physical therapist for 5 minutes. For 5 minutes, my job was to talk about anything to take his mind off of how hard it was to be standing for 5 minutes.
Aaron would see about 5 specialists a day. The infectious disease doctor (Anne of Green Gables) would see him every night to double check on him and tell us what infections they had ruled out. Aaron had a kidney doctor as well. Aaron's right kidney had been a little....traumatized. Turns out that the infection got MIGHTY close to it. It was enlarged and oddly enough, was showing way too much calcium content. Turns out, that that can be a sign of a rare form of cancer.
Spoiler Alert: NO CANCER. Before Aaron came into the hospital, he was drinking 2 gallons of a milk a week at our house. Turns out, that you can OD on calcium. Aaron did not have a rare form of cancer. A week later, all indications....disappeared by magic.
The kidney doctor was also in charge of Aaron's TPN. That's IV food. Aaron went into the hospital severely malnourished. Or as Anne of Green Gables put it, "You were just starving to death slowly at home."
Dr. Reese explained it to us another way,"We looked at your prealbumin levels when you came in the hospital. A healthy person is between 20-35. A person with colon cancer is about a 10. You were a 4." So the IV food was staying. Even when Aaron was reintroduced to food. Apparently TPN is the kidney specialists area or rather, if you are on a TPN a kidney specialist needs to keep an eye on your kidney's while you are on the TPN.
The sweet tiny little nutritionist. This woman was so little...seriously. Tiny human being. Her job was to make sure that Aaron's TPN had enough fat and other good things for Aaron's body. Once he was on food, her job was to make sure he eat his food. Aaron had to drink an Ensure with every meal. Since his protein (prealbumin) levels were so low, he NEEDED to drink an Ensure with every meal.
Dr. Reese, or one of his colleagues in his practice, would come and look at Aaron every day. Or some would just stick there head in the door so that they could charge our insurance $250 a day.
Oh...and let me not forget Dr. G. Dr. G's job was to be an idiot. Or...I mean, attending physician. This guy came in the second day Aaron was in the hospital and said, "Alright, we're hoping to discharge you on Monday because I don't like letting patients out of Fridays. But your insurance company won't want you sitting here too long."
When I asked Anne of Green Gables about it that night she said, "What is he talking about? No. You have to be on the IV antibiotics for AT LEAST two weeks. There is no way. You are not leaving."
Dr. G's job was SUPPOSE to be to coordinate all the specialists and make sure everyone was on the same page...which was never the case.
Two weeks was a rough time frame because Thanksgiving was the next week. My brother was planning on coming down from Idaho to spend the holiday with us before all of this happened. I told him to go ahead and come down since we were still going to have Thanksgiving one place or another. So Markus came down and helped us out for a week. That way I could go at night to visit Aaron without Zach.
As Aaron started feeling better every day, Zach got to get closer and closer to him.
Here he is getting to cuddle (on the left side) of Aaron for Thanksgiving! Aaron found out that if he shared food with Zach, he could get Zach to hang out with him.
I'll write a separate blog post about Thanksgiving because, goodness knows, this post is going to be long enough all ready.
This was a couple days later, reading a book together.
Being away from each other was rough on both of these guys. But I think it was the hardest for Aaron. Aaron really loves his kids.
It was rough on us too. I really REALLY like living with my husband....that's one of the reasons that I married him.
Here we are having a Popsicle date night. Zach isn't the only person who could cuddle very gentle with Aaron after a couple weeks in the hospital! Side Note: My face gets so pregnant...but to be honest...this isn't a great picture of either one of us.
Adna, the night nurses assistant, was the best. She would come in and see us cuddling and watching tv shows and ask us if we wanted some snacks.
Aaron's mom came back after Thanksgiving to stay with us for as long as we needed. In the middle of all of this Zach got his first haircut so he looks all grown up from here on out. That was something else that was rough for Aaron. Zach was starting to grow up faster and Aaron felt like he was missing it.
I had planned on doing an event Advent calendar to get us ready for Christmas, but that went out the window for the most part. But I tried to do some of the activities, like, "Read a Christmas book with Dad".
On December 3rd and 4th, while I was snuggling Aaron during one of our "Popsicle dates", I thought that I smelled something funny.
In Aaron's condition, he couldn't get in the shower. There was too big a risk of contamination...you know....with the holes going right into his body. So...I didn't want to say anything to Aaron about the smell.
Then he said, "I feel like I smell really bad. Do you think that I smell bad?"
"You smell a little bit but I don't know whether it is just hospital smell or lack of a bath."
So, I sponge bathed him off so that he didn't feel so grimy but then I noticed that the smell was coming from the bandaging.
We talked about maybe being able to clean him off better at the rehabilitation center they were moving him to.
See, Aaron was out of the woods, medical emergency wise and the infectious disease doctor was winding down with her antibiotics. Aaron couldn't go home because the wounds were so bad that the surgeon didn't trust home health or me to take care of it yet. So they were planning on transferring him to a special rehabilitation center Friday the 5th of December.
We definitely didn't know it at the time but this was the second to last meal that Aaron got to eat for 3 weeks.
I took these pictures because Aaron had shaved. I hadn't seen his face shaved in 6 years. He basically just couldn't maintain it and keep it clean while he was in the hospital so he thought it was time for it to go.
Friday morning, when Aaron's mom, Zach and I got to the hospital, Aaron told us that he had bleed through his bandages that morning and woke up in a puddle of goop. The nurses had patched him up but wound change would be coming early.
Which was fine, because maybe that meant moving all of his stuff to the rehabilitation center sooner rather than later.
Then Dr. Johnson came in. Or, "Entourage", as we would call him. He was a surgeon in Dr. Reese's group who we had seen a few times. He always wore a baseball hat and a hoodie over his scrubs. We called him "Entourage" because he always had students in tow....and they were always tiny Asian ladies. They looked like they were making a medical rap video.
He said hi to all of us and asked Aaron how he was doing. Then he asked if he would be able to have a look at the wounds and show his students. Aaron said that that was fine and told Dr. Johnson about leaking through the bandages this morning.
Dr. Johnson pulled back Aaron's gowns and he looked curiously at the visible drainage. "One second. Let me grab some gloves." He grabbed some gloves off the wall and came back to Aaron and started to undress the wound.
Zach and Aaron's mom went into the hallway to wait. Unpacking and repacking was something none of us wanted to watch.
He started shaking his head, "No man....you are NOT going to the rehab center today. You aren't going anywhere."
He rushed out of the room and told the nurses, "Call wound care RIGHT NOW. They need to come up and see this." Everyone started rushing around. Cleaning up Aaron. Getting him drugs. Calling the infectious disease doctor. And Dr. Johnson went to the phone to call Dr. Reese.
Aaron's colon was OBVIOUSLY leaking. They couldn't see it on the CT scan but the drainage was....fecal. There really isn't a better way to say that. I mean, fecal matter was draining into the giant wound. That hole from the intestines must have caused the abscess and was still open.
Dr. Johnson said that they would probably need to operate immediately. Sometime that weekend but he would have to get a confirmation from Dr. Reese.
We couldn't believe it. Everything had been going so well.
They had to immediately take Aaron off of food because they couldn't have this hole draining waste into his newly cleaned wound.
The wound care specialist came up and attached a new kind a bandage on Aaron. Hard to explain...basically it was a plastic sack with a tube to drain into a bag on the side of his bed, since it would be awhile before Aaron would stop leaking through regular bandages.
They did some more scans and tests and on Saturday we heard from Dr. Reese. He wasn't going to operate yet.
He didn't tell us until later but basically, he didn't want to operate quite yet because 1) Aaron's insides looked like mush from the last surgery so visibility would be bad and 2) Aaron's health was so poor when he came into the hospital that Dr. Reese was worried that Aaron would die on the table and even if he didn't die, the healing process would be slow and therefore dangerous because of how they would have to leave Aaron open.
We would have to wait. All the IV antibiotics had to be started back up again. The nutritionist was beside her tiny self. "He's already lost so much weight and muscle mass! He needs to eat food!" And a urologist was called in. If Dr. Reese was going to be working in that ripped up area again, he wanted a stent put into Aaron's ureter (tube coming out of the kidney) so that Dr. Reese would be sure to see it and not cut it.
Our brand new bishop came to visit Aaron that Saturday as well. It was lucky that he did because Aaron was starting to get a little depressed with everything going on. Especially losing food privileges. The bishop gave Aaron a blessing and blessed him that he would be able to stay positive and be grateful for all of the things that he had available to him and all that he was being blessed with.
A couple days later Aaron got moved into a shared room and lost seeing Zach privileges. Zach couldn't be in the room with another patient and Aaron started to realize that he had a lot to lose still and he should be grateful for any little luxury that he had. (Oddly enough, I said, "Aaron, if my blood pressure gets worse, you could lose 'wife privileges' because I could be put on bed rest in another hospital.")
They scheduled Aaron's stent procedure for the follow Tuesday. Exactly three weeks since this had all started. Aaron was thrilled.
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| Doesn't he looked thrilled? |
I was filling out the paperwork for the surgery since Aaron had trouble writing with an IV port in his hand and while I was filling out the paper work there was a question: Have you ever had surgery before?
I wrote down yes. And Aaron said, "What? What are you talking about? I've never had surgery in my life. What surgery are you thinking about?"
Blank stared at him for a couple seconds...."Are you serious?" "When have I had surgery?" "Ummmm....3 weeks ago." "Oh....I've been on a lot of morphine."
After the procedure to put in the stent, they moved him back into his new room...with Bill. Bill is an entirely different tangent.
The hospital had gotten so full over the weekend that they had to start diverting ambulances. Aaron didn't need to be in the surgery ICU wing anymore so they moved him into a shared room. And Bill moved into the bed next to Aaron.
Bill was cranky and loud and 81 and slightly senile. Aaron didn't get any sleep for the couple days he was in there.
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| When we met Princess. |
Luckily for Aaron, his doctors weren't pleased with the move either. Anne of Green Gables was pretty peeved about it since Aaron had these open wounds and shouldn't be allowed around other people because she was ALREADY trying to kill any possible infection in his body. She especially didn't want him around old men who were threatening to pee everywhere. After a good amount of Aaron's doctors told the charge nurses to make Aaron a priority, they moved him. Aaron hadn't slept in days.
This was Aaron 30 minutes into being in a quiet room.
Aaron started walking with a cane around that time. For a week he had been getting around with a walker so he felt pretty good about this next step. NO pun intended.
He wasn't very fast and if he turned his head or stopped thinking about his right foot, he would start to go down but he was making fast progress. Zach would run around the hospital pod lapping Aaron several times when Zach was there during physical therapy. Aaron kept saying that he needed to learn to walk as well as Zach (who had only been walking for about 6 months).
Notice Aaron in this picture not putting weight on his right foot. I feel like every time I saw him standing up, I wanted to start taking pictures because I was so happy to see improvement.
But Aaron was getting very thin. He wasn't even looking like himself anymore. This picture seriously freaks me out....I don't know who that guy is.
Slowly, we were getting closer to the surgery date. They charted Aaron's prealbumin and albumin levels every day waiting for them to be high enough that it was safe to operate. Dr. Reese wanted to work with another surgeon for this next surgery. He wanted to make sure that he had extra eyes and opinions so they had to coordinate their schedules as well (I won't write about the day they had Aaron drink a gallon of laxative and then not schedule the OR...it still raises my blood pressure).
This was Aaron's last walk with physical therapy before surgery the next day. It was kind of emotional since we knew that after the next surgery, Aaron wouldn't be able to walk again for awhile and we would be taking a step backwards in terms of walking ability.
Last chance snuggles with dad because we didn't know when he would be ready to snuggle after this next surgery.
Wednesday afternoon. This was the last time Aaron acted silly for a good long while.
Dr. Reese came in and told us again what he had been telling us for weeks. "We don't know how bad it is. We are going to cut out the section of colon with the hole but we have to attach the cut pieces to healthy tissue. If you have active Crohn's disease throughout, we will have to take out your whole colon and you will have a colostomy bag. Hopefully we will just remove a small portion and reattach the two ends and close him up. But we'll see when we get in there."
They wheeled Aaron into surgery and I went out into the waiting room with Aaron's mom. I talked with my mom on Skype all the way in Thailand. They were getting ready to fly out to the US for Christmas. I couldn't believe it was already December 17th. We'd already given up hoping that Aaron would be home for Christmas so we were discussing possibilities for Christmas in the hospital.
After about 2 and a half hours, Dr. Reese came out to Aaron's mom and I. It wasn't all good news. But it wasn't all bad either.
When they got in to look for the hole in Aaron's colon, they found two different holes in two entirely different places. The main one (they assume the first one) was located in the first part of Aaron's colon. They had anticipated as much.
What they didn't anticipate was that, when the abscess was growing and growing, some how, one of the fistulas that formed off of the abscess traveled to the lower part of Aaron's colon. OR both holes formed at the same time and fed into the same abscess.
Later, Dr. Reese told us that he talked to a colleague of his who specializes in colon surgeries and she said, "What happened? Oh my gosh...I've never heard of that happening before. That's terrible." I've always know Aaron was one of a kind...but this was ridiculous. Or as Dr. Reese put it, "When it comes to medical issues, you don't want to be interesting."
LUCKILY, Aaron had tons of healthy tissue. The large majority of Aaron's colon was free of active Crohn's disease. Which means that the surgeon didn't have to remove all of Aaron's colon. But because of the complication of two different sections with issues, he had to get a little creative.
They removed about a foot of colon starting at the connection to the small intestine and that removed the first hole. But they had to wait on the second hole until this new section healed up. That meant that Aaron had to have a temporary colostomy bag until they could do another surgery.
A THIRD SURGERY! ARGGGGG!! We really wanted this one to be the last one.
But no, he said in 4-5 months they could go back in and reverse the colostomy.
We were told what room Aaron would be moved to and we headed up there. Aaron looked awful. He was 110lbs and so dehydrated from the oxygen during the surgery. He had the tube back in his nose that he hated and he was in so much pain. The doctor couldn't close him all the way up because of the possibility of infection. Basically there was a huge chance of the site getting infected by the abscesses residual infection and that would burst Aaron open down the middle and hello sepsis. I have pictures of what it looks like but....I would assume MOST people wouldn't want to see. I personally wish that I had not seen.
Aaron spent the night in a horrible amount of pain. Thank goodness by this time, it seemed like all the nurses knew Aaron and so they cared SO MUCH about him. One nurse wasn't even covering Aaron that night but he was in the room constantly asking Aaron about pain, then calling the surgeon to approve more pain medication and giving it to him. No one slept much that night.
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| My awesome bed! |
It wasn't until about 24 hours later that Aaron had the courage to ask, "So...what happened? Did they have to take everything out? Dr. Reese said I have a colostomy bag."
Oh wow...he had been so messed up on pain killers and anesthesia that he couldn't remember that it was only temporary. I felt so bad that he had spent the last 24 hours trying to come to grips with the fact that he was missing his whole colon. I cleared that up really fast for him. Temporary. One more surgery to go.
He didn't move much or talk for days. It just hurt to much to do anything. He couldn't eat yet because when intestines get man handled, they get a little freaked out and just turn off in protest. Once they came back on, Aaron could start eating food again but there is no way of knowing how long that will take. The tiny nutritionist was not pleased but there wasn't anything she could do but watch him shrink.
His mom had to head home for Christmas and then my parents came on Monday the 22nd.
I took my dad to visit Aaron when they arrived. Which is kind of a big deal. My dad hates hospitals and isn't a huge fan of visiting people in them if he doesn't have to. But we went to hang out and talk. Aaron couldn't really participate much but he enjoyed having people in the room taking his mind off of the pain. He was in and out on the pain medication but felt better having someone near by.
The next day my brother's and I nearly killed Aaron. Aaron couldn't laugh without feeling like he was splitting in half but...we can't help that we're super fun to be around.
And that night, Aaron's intestines started back up, just in time for Christmas Eve.
I'll write a separate blog post about our hospital Christmas.
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| Don't worry, his foot isn't really turned like that. |
But this is where Aaron and I go our separate paths in this story. I went to a
hospital of my own and Aaron and I didn't meet back up until December 30th.
Now that you are 2/3rds of the way into this story, you might as well stay tuned for Part 3. The Final Surgery or The Happily Ever After.
