Tuesday, April 1, 2014

Preparations to exit the ICU for the Floor

By this time in ICU I have had a majority of my IV's out (I've only got one left). They are feeding me some via the J-Tube that is protruding from my stomach to the left of my belly button and they are starting to ask me about what I want to eat from the hospital cafeteria. It is only soft foods, but it is a step in the right direction. Honestly though, I'm not hungry.  At least I don't feel like I am, so I never answer the questions about what to bring. That forces them to just kinda pick and choose what to try.  Lea Ann helps them choose based on what she knows I will eat, or at least what I used to. They bring things like really thin oatmeal, jello, pudding, shakes with extra protein added (the bring me two of these with each meal), Milk, and some sort of juice that varies between apple, and grape and orange. I'll nibble here and there but I just do not feel like eating. I am honestly still a bit afraid. But what am I afraid of? That could be quite a list at this point but the three things foremost in my mind are swallowing in general, food getting stuck and the pain that MIGHT cause, and the general idea of actually having to eat hospital food. Yes, I said that last one was a foremost thought. We've all heard about hospital food. What they say is true. It is bland and everything seems to taste the same because it all has a similar smell (which also is not that appetizing - or at least it wasn't to me). Backtracking a bit on the other two thoughts... Swallowing. Why on Earth would anyonw worry about swallowing? Basically because I had not had to do it for quite a few days and I know that what my surgery did will affect the swallowing mechanism. Will it hurt? I never asked, but I assumed it would. Kind of like after a kid gets his tonsils out I supposed. I wasn't willing to risk it just yet. Food getting "stuck"... This was actually happening to me before surgery because of the mass that was on top of the Barrett's Esophagus I had that actually has the cancer in it. Certain things I would eat would get to about the bottom of my breastbone and just "stop." There is no really easy way to define how it felt. It was NOT a choking feeling. I could always breathe fine and it never affected the breathing portion at all - Thankfully. The best way I could put it is it would be like I took a bite (usually too big of one too, remember I was quite overweight) and it went to the top of the stomach and stopped in its tracks. the esophageal muscles were trying to push a bite that was too big through a hole smaller than it was. At least for a while. How would I get it to go down? I tried everything... Drinking all sorts of different things form water to soda to milk to... fill in the blank. What I found would happen was that the bite ended up acting like a ball stopper. It would allow a bit of the liquid to get into the stomach then would try to go down itself and get stuck again so now I had liquid on top of the blockage, a little in teh stomach along with some air... That didn't cause me to get sick as in vomiting, but it did cause me to burp... which caused the backed up liquid to be regurgitated. It was (and still is) a very odd sensation and is very uncomfortable. As time has gone by I have gotten somewhat used to it when it happens and I've learned a few tricks to hide that discomfort and wait for the bit to finish that journey, but at that time I was clueless. All I knew was it was a very uncomfortable feeling and I would forgo eating just to make sure I didn't have to endure the feeling. So to say I was eating in a very guarded manner would have been a gross understatement. And for whatever reason I was not pushing myself in that regard either (along with the breathing therapies I was supposed to be doing or the walking). I did start eating things slowly and very timidly.  Mostly drinking. This was going to take a while to overcome. I was still getting the tube feedings as well so as to not be missing out on things I needed nutritionally.

Walking... Do I have to? They actually got me to get up and start walking. Being an ex-athlete I could not for the life of me understand why this was such a big deal. Walking is second nature to us all. It should be no big deal.  I am strong and I can walk whenever I want. Oh how we convince ourselves of things that are not even close to true. It took them several days and Lea Ann asking them about it several times and her also asking me when I was going to get up and start before I actually did it for the first time. It was several days beyond when they were supposed to start it when I finally did my fist walk. I had held it off as long as I could. So here we go. I am told that most use a walker when they start their treks, but I would be pushing a wheelchair. Why? Because I was still hooked up to IVs and other mechanical devices plus the drain tubes were all mostly still in and I had hardware that was holding my stomach incision closed.  They could take all the machines and drainage bags and IV pouches and whatever else off the racks they were on and place all of them in the seat of the wheelchair so they could come with me. How convenient. This was worse than the toilet dance I spoke of in a previous post. Can't this wait until I get off all these machines and IV's? Nope. You have to walk today (and that was coming from the nursing staff AND Lea Ann - I had no choice). Fine. I'll walk. I'll show you I can do it and it won't be a problem then you all can get off my case about it. They bring the wheel the chair over and start loading it up. It's amazing the amount of stuff I am still hooked to, especially since I had felt before now that most of it had been removed. Boy was I wrong. Things are getting disconnected and unplugged and put on battery packs and reconnected and all sorts of other things.  It is taking two nurses and Lea Ann to get this all set up. All this over a silly little walk? OK, time to sit up. No problem I'll just lean forward and rotate over to get my feet on the ground... Um... excuse me? I said I would just lean up and rotate around. Brain to body, please respond. I finally actually attempted to lean up out of the recliner. OW! What the hell? I cannot sit up at all!  It hurts and even if I could have I would not have been able to stay sitting. Well I did have my stomach and back cut open so this makes sense. I get help sitting up from the nurses, with Lea Ann standing by in case they need an extra set of hands. I get spun so my feet are off the edge of the recliner and they make triple sure my feet are on the floor and feel comfortable to me. Yes, yes I am fine. Can we just start this please so I get show you all I am fine and get back to lying down? Time to stand up. I get some weight on my legs and they start to shake and tremble. What the hell is going on here? My legs and my back were the strongest parts of my body less than 2 weeks ago. Now I can't even stand up? I must be over-medicated. It will get better as I go I'm sure. Just haven't been on my legs in a few days and they got lazy. Little did I know... It is amazing how quickly you lose muscle mass when it is not being used. It takes so much less time than it takes to build it back up. I finally get standing, nurse beside me, Lea Ann on the other side, nurse behind. I'm starting to get concerned now. This is NOT how this is supposed to go. So I start to walk... If that's what you can call it. The best thing I can relate it to is some old 1950's horror movie where the monster drags a leg when it walks... But I was dragging both in an alternating fashion. I'm already starting to sweat and huff and puff a little bit and we have not even gotten out of the room yet. All manner of red flags and alarms are going off inside me.  Nothing is working right... In my head I start to panic. Outwardly, I am staying as quiet as I can and trying not to show it, but inside I am going crazy. Why are my legs not working? Why can't I move them properly? Why is this so hard? I've taken four steps and I am shaking like a leaf and sweating. This is excessively incorrect. The staff and Lea Ann, bless them, are telling me I am doing fine and that I can stop when I need to to rest or even sit if necessary. We get about two steps outside the room and I have to stop. It's like running a marathon. Holy hell... They walk me only one room past mine, turn me around (VERY slowly so I don't get dizzy) and walk me back to my room and the almighty recliner. I sit heavily on it. They tell me that I need to work on control more but that I did very well for the first walk. Again, my inner monologue is telling me they are just being nice. I walked 15 feet in 15 minutes and that was good? This is WAY depressing. At least I did it I suppose. I need a nap.  And I slept not long after.

Not long after waking up, the surgeon came in and looked at charts and bags and the drains and all and declared that some would come out today and some tomorrow.  Well cool. Less things to lug around at the very least. OK Doc, how and when will they be coming out? Oh it's simple. We take the dressing off the ones we want to remove and just pull them out, then a fresh dressing on the wounds. Um... Excuse me? That doesn't sound so pleasant. Oh don't worry, you won't feel it much if at all. If you say so... but I am already starting to tighten up (well as much as I can considering my current physical situation). The doc's assistant comes in and starts telling us which ones are coming out. She says it won't take long, but they do ask Lea Ann to leave the room. I don't want to watch either so I don't.  I feel the assistant and the nurse removing dressings from around the tubes and they are talking about what to do when and where to put this and that. Then the assistant asks if I am ready. Yes... No... Maybe... Just give me a count down if you would please. She agrees and taps a tube to let me know which area I may feel it in, then starts counting...3... 2... 1... Pull. Like hell I won't feel it. It felt like something was uncoiling inside of me and it was very uncomfortable. It wasn't really pain as much as just a totally uncomfortable feeling. I honestly think I would have handled it better if it was pain.  At the very least I could have been given something for that. OK the first one is out. The nurse is dabbing around the wound area, and covering it and then they are moving to the next one.  All in all they did this for four or five of the eight drains I had in. She stopped there and said the rest would likely come out tomorrow. Thank god. Now I need another nap, but I wanted to wait until Lea Ann came back in so let her see I was OK and hopefully keep her from worrying. Not sure if it worked or not, but she smiled at me and said it was another step towards getting out of here. She's right. It is, but it doesn't really feel that good. It feels like a step backwards to me.

Breathing therapies... still avoiding them. I say I did them when no one is in the room but rarely did. Not because it was hurting, but because it was hard and it was pretty disheartening that I wasn't even able to breathe right. Between this and the walking debacle, I'm just wiped out and starting to get depressed and mad at myself. I'm never going to get better. Why even try? The anger/depression monster sets in again. When he comes around I avoid him by sleeping. I would be sleeping a lot these next weeks and months. I live through the breathing treatments two or three times a day. I'll walk maybe one more time today, but I hope not. All I want to do is sleep... To escape.

The nurses and docs are all talking about getting me out of ICU as well...

Thanks for reading.  I will see you all next post!


CareAcross said...

Don't let things get you down - you WILL get better (even if taking drains out causes much pain).

Is your walking improving?

Brian Brown said...

Hello! Oh it did get better, trust me on that. I'm shoveling snow like I was before this whole situation started. :) I won't say "like a teenager again" because that would be a lie. Don't have that kind of energy anymore, but I try! Please keep in mind that these things I am writing about are from right around a year ago. I had to take that year to get used to my new normal and to get some perspective on the entire situation. Writing it at the time it happened would have been too raw (had it even crossed my mind), if that makes sense. :) I'm glad that what is being written, even a year after the fact, is still seeming to strike chords with people though! :)

Cheryl Gleghorn said...

Thank You, Brian. You are on my daily prayer list. Lea Anne is too. It may have been a year ago but I still feel like I am traveling the road with you and your family. It is an honor.

Brian Brown said...

Much appreciated, Cheryl! One can never have enough prayers! I appreciate your journeying with us! :) Thank YOU!