I wrote most of this post while I was still laying in a hospital bed taking a bunch of naps in between so please excuse spelling errors and ranting. Hopefully I won’t have to go through this again, but here are a few things I learned about my experience if there is ever a “next time”, maybe my fellow CDH1 friends can contribute a few of their own suggestions.
1. There is no way to make the NG tube comfortable so have your mind mentally prepared for this. This for me was probably the most uncomfortable part of the whole procedure. I mostly tried to keep myself busy. I like to know when things are going to happen, so I remember bugging my doctors about when this tube was going to come out. When they said, Monday, I knew what to shoot for… this did however, make Sunday, the longest day ever. Sunday, day 3 after surgery, was by far my worst day in the hospital. I was in a lot of pain, the tube was really starting to irritate the back of my throat and I swear, I could feel it scraping around in the inside of my “stomach”. Phantom pain? Perhaps, but I knew it was there. By Sunday it had been 4 full days since I had any kind of sip of water as well, so I was incredibly thirsty which did not help me in the attitude department. All that to say, I think attitude is how we win the war with the NG-tube. Never again. Goo.
2. Don’t bring too much stuff. You are so tired and drugged up that you will literally need to take a nap after reading a message or in the middle of writing a blog… (seriously, I took 3 naps during the writing of this post). I had my iPhone and iPad and that was really all that I needed to keep me entertained for my 1 week stay in the hospital. I don’t know how it happens, but by the time the third or fourth day came around I felt like I was on an episode of hoarders. I had 3 or 4 bags worth of clothes, multiple blankets, and lots of little things. Kate had to start taking most of that stuff home by Sunday.
3. Be in reasonable shape. The day after surgery they had me get up and walk. I walked to the charge nurse desk about 15 feet away and that was exhausting. They had me do that at least twice on day 1. They made me walk at least three times a day and do breathing exercises every hour which left me pretty tired. By the end of my stay though I could walk pretty far and do little laps around my unit floor. My wife Kate, who is a nurse, says that patients who walk after surgery tend to do better and heal quicker in the long run. It also helps to prevent things like pneumonia and blood clots. Back in January I made it a goal to run a 100 miles before surgery and I think that is paying dividends in my recovery.
(Insert nap number 3 here)
4. I’ll save the gore pictures, but be prepared for some to see some battle damage. I remember I woke up in the elevator right out of surgery and heard Kate saying to me, “they are all done, it went well, the scar is bigger than we thought.” I then remember picking up my head to look at the damage feeling like I was on fire and then falling back asleep. Things like coughing, sneezing, and hiccups feel like death, but it helps to splint yourself with a pillow.
5. Apparently weight that goes on fast comes off fast. Throughout the eating tour I put on about 10 pounds. The day I went into surgery I was 206.7 lbs. This morning, 9 days out of surgery I was 191.1. I’m supposed to level out and every day I feel like I’m getting a little better at eating. The first few days of eating were pathetic. It would literally take me about 4 hours to eat a single protein bar. Right now it doesn’t take too much to make me feel absolutely stuffed, but I find it helps to follow-up every meal with some warm tea. In the beginning, my body did not like some of the foods I was eating which made me really sick and incidentally gun-shy around trying new foods. One of the doctors from our surgical team explained it to me this way, “right now your intestines are ‘pissed off’… it’s not used to receiving any amount of undigested food and now you are asking it to change its role.” Well said, Doc, well said. Today, I’ve been trying new things and I find if my body doesn’t like something, it tells me pretty quick, so I’ll take a bite and wait about 15 minutes before I decide to continue. I figure if a big bites make me really sick, then a little bite will only make me a little bit sick.