Monthly Archives: April 2014

Tuesday Derek Hospital Status

I’m still here in the hospital in the second fortnight of my stay. On Monday, as Logan mentioned, the feeding tube did become clogged and needed to be removed. It was a little reprieve for my nostrils, and that night I had the options of lying flat in the bed. I couldn’t do it, but it felt good to have options. When you have the feeding tube, they really frown on being elevated less than 30 degrees. I felt I had some freedom last night.

Tuesday morning, the doctors made their rounds and I had a discussion with two of them about whether I could handle my protein and caloric intake on my own, or whether re-introducing the feeding tube would be necessary. I told them the truth. My appetite is getting better, but I don’t think it’s 2000 calorie level. Plus, I’ve seen my weight drop over the past few days. This shouldn’t be surprising, but I don’t want to wilt away before another surgery. I told them the feeding tube would be a good idea, and I’ve gotten used to the feeling, so I no longer complain about pills sticking to it, or I can’t eat food because it’s too big. I’m just going to try to eat my way through calories and protein, and let the feeding tube be the auxiliary system. They seemed to agree with that assessment.

Later in the morning, the whole team crowded into my room to discuss my condition and the current state. I was commended for my honesty – most people refuse the feeding tube, and I can see why. We also had a discussion about all this “liver sweat” that’s being pulled from my body. I have a drain tube connected to my insides around the liver, and it collects 1.7-1.9 liters of fluid a day. This is ascities fluid. They explained that usually the fluid coming into the liver is handled by the protein which converts it and sends it along to the kidneys for processing. In my case, there’s not enough liver protein yet, so it just sweats it out around the liver.

In my infinite wisdom, I thought “Oh, if I eat more protein, it’ll be converted to liver protein and I’ll see less fluid.” Right-o, Mr. Janiak. What I found out today, is this is not an instantaneous process. It’s about 1.5 fortnights to see results. Which means, my change in diet today will not reduce that fluid for another 1.5 fortnights. What does that tell me? I might be tethered to this wall for a while, or I hope the new cadaver liver comes in soon. I can be disconnected from the wall for periods at a time, but not hours or days. Going home seems out of the question with this fluid issue. It’s a bummer. I need to double-check my thinking with the doctors, and see if they are thinking the same.

Today I also got sent down to get a bile duct reading. They inject dye into the bile ducts, and check for strictures or other anomalies. In my previous life, the bile ducts were like balloon animals or sausage links. Some areas were constricted, and others appeared much larger.  The doctors wanted to check on Logan’s liver to see if they could see something similar. I saw the pictures on the screen, and didn’t see any balloon animals. But then again, I’m not a doctor.

These were the excitements of the day, with the addition of re-introducing the feeding tube, with a left-nostril preference, later in the evening. I felt like I ate a whole lot of food today, and slept a lot. Like 2 hour naps, 4 hour naps, etc. I took a walking loop around 6 Central to get some exercise and ward off the sleepiness. It kinda did. Until I sat back down and took another nap. I hope my body is taking the protein I’m eating, and really converting it to liver while I’m asleep. I know that’s what is supposed to happen, but I can’t tell. I just eat and sleep.

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Progress Report For Both Patients

Holding hands while Derek naps.

Holding hands while Derek naps.

Yesterday was the 2 week anniversary of Derek & Logan’s dueling surgeries, a.k.a. Livernalia. So that meant a check-up at the hospital for me. I needed to provide blood and a urine sample so my surgeon could make sure I was doing well. I got the labs done right away, and then my brother Starskee and I made our way up to 6 Central to visit Derek. When we arrived, THE Greg Hallerman of Boston Marathon fame was visiting along with his lovely wife Jeanette (I think I remembered her name correctly. If I screwed up, please tell me Greg and I will make the edit!) who just so happens to be a massage therapist. Lo and behold she was giving Derek a much needed neck and shoulder massage. Greg also shared more details about his experience on Marathon Monday. It sounds like it was such a great day, and even though the route has always been paved with well wishers from every town on the course, it seemed especially sweet this year.

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Sunday Adventure

Yesterday, I asked my parents to bring me a b.good burger and a vanilla milkshake for lunch. I made the assumption they would be down at 1:00, it may have been wishful thinking since I was napping in bed and it was past 12:30. I roused myself out of a deep slumber, and felt exhaustion in my body. The covers were way too heavy. It really takes effort to roll to the side of the bed and sit up, but I needed to; I was expecting visitors. As I started to make these movements, the nurse knocked at the door, opened it and said that my parents already dropped off the milkshake in the fridge, and the b.good was on the table next to me. Dag-nab-it, I was late. I struggled to collect myself, and realized that I needed to make it through this day. I wasn’t as sore yesterday as I was the day prior, so I can’t be that sore today, right? Wrong. Still sore, but I need to move slowly to build muscle and rid my body of soreness. Sunday would prove to be another adventure.

We ate lunch, or rather, my parents watched me pick at the burger, making it about 1/3 of the way though the patty. I also used the  leftover chocolate shake as Carnation instant liquid, and added two packages to make it 350 calories of tasty-goodness. Then it was time to change the wound-dressing for the big adventure to the lobby and fresh air!

They disconnected me from ALL the tubes and wires and set me free for a bit! I climbed aboard the wheelchair, and got to experience going fast, i.e. normal walking pace, again. Then, a trip down the elevator where I really wondered whether I would feel a wave of vertigo, and then over a series of uneven carpets that jostled me even when they must have seemed minor to everyone else. Logan, I don’t look forward to the car-rides!

We made it outside!

FirstOutside2

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Here’s Looking at You, Bilirubin

There is an eye-witness account at the scene stating the bilirubin levels were in the mid-20s when this picture was taken.
Bilirubin_Eye

 

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Logan’s Big Day Out

Today was my biggest adventure since going to the fabric store with my mom back on April 13th. My brother Starskee and I made the trek down to Burlington today to see Mr. Derek and it was lovely. He was in relatively good spirits. I say relatively because he’s been having an annoying issue with one of his drains. It makes him less mobile and a less mobile Derek is a crabby Derek. But he rallied and we had a really great visit.

My brother spent the time making an ultimate mix of music for Derek to rock out/relax to. I spent the time discussing the parts of last week that I completely forgot about. For example, apparently I had a very insider conversation with Derek just before being wheeled into the OR. I guess the doctors and nurses asked Derek’s brother if he understood what we were talking about. I do not remember this at all, but rumor has it, they wheeled my gurney by Derek’s curtained area, the doctors parted and we had a one minute chat. I’m so glad to hear that I saw him and talked to him prior to surgery, but boy, am I drawing a blank about it. I remember being in the OR and moving to the operating table, and then the next memory was of my surgeon and my mother smiling at me while a nurse took my temperature with some kind of space age wand.

We stayed for a while and I began to get very tired; Derek caught me staring off into space. He knew I was tired and told me it was ok to leave. I started to cry a little, because honestly, I was really tired, but I didn’t want to leave him. I suppose it’s going to feel that way every time I leave him. I brought him a photo that Greta took of me a few weeks ago, sporting my trademark smirk. My brother rigged it up so Derek can look over at it from his bed. I hope it gives him some comfort to know I am watching over him (I don’t mean that in a creepy way, Brady!)

When we left, we ran into the Janiaks. They had a chocolate frappe for Derek which is one of his favorite treats. He told me tonight he ate half and saved half for later. Huzzah! His nurse assistant tonight is one of my favorites and she just so happens to share something in common with Derek: they both have titanium in their skulls! She is also a crossfit trainer and I hear she had Derek walking down the hall at a pretty good clip. His heart rate was elevated (she’s also very pretty, so who can blame him!) and the nurse’s station called to check on his telemetry. They’re apparently not used to dealing with a badass like Derek.

I love you, buddy. It was so good to see you today and I hope you have a great sleep. See you Monday!

Oh, one more thing, when we left, we stopped for dinner and I ate a whole cheeseburger. Something I am sure my mother will be relieved to hear. Mom, I ate a burger. My stomach must be nearly back to normal.