Tuesday, April 22, 2014

Back to the Floor, then Out the Door

First off, I would like to apologize for the length of time between posts. We had a bunch of things go on in the family and then had Easter weekend too. I just ran out of time. Nothing bad happened, but family always comes first! I am sure you all understand. :) Put over 2300 miles on the car in the last week alone...

So... A few rather uneventful days back  in ICU. We are going through the daily motions... Morning rounds, breathing treatments, a few walks... and even starting to eat some solid foods again. Actually more like semi-solid, and the jury is still out on calling hospital food real food. It seemed to always taste and smell the same. ALL of it. Even the Jell-O. It may be because I really am still not interested in eating, but it may be that all hospital food IS that bad. After a few days the decision is made to send me back up to the floor.There is nothing really keeping me in ICU now since my saturation issues have been taken care of and everything else is looking pretty good. No real reason to stay, so on the morning of about the 17th day post-surgery I get moved back up to the floor. I now only have an oxygen line some of the time and one IV and that is locked off and only used sometimes. I'm now able to get up on my own and go to the restroom and even shower. Well kind of shower. It is in a shower with a place for me to sit. There is that hand-held shower head action going on, which I happen to highly suggest to everyone. Don't get me wrong, the getting up was still not easy and I had to move very slowly and such small steps. There is very little power or strength there. Mentally I am still not here. Very deep into my own head and not willing to do a whole lot, but at least I will be being released soon. Ad that is released to go home. They have tried again to talk me into going to a rehab hospital. Again I stopped that cold. I flat out refuse to go to a rehab hospital. Anything that can be done there I can get done at home with home health and/or home visits by therapists. After arguing with me about it and talking with Lea Ann about it too, they decide it will be OK for me to go home. Damn straight it will be OK. I am going home. No other option. They say my release will be tomorrow or the next day. So at most I will be in the hospital for this surgery for 19 days, 16 of which were in ICU. Looking back on it now a lot of things happened that could have made things much much worse. Things like the surgery itself and the 12 hours I was under that knife; the day of hell when my body went haywire on the third day after surgery that included heart rate issues, blood pressure (low and high), saturation issues and a general lack of much consciousness that day; the oxygen incident and subsequent oxygen saturation issues; a central line IV infection that was keeping my white blood cell count at a little more than twice the normal limit; my lung not re-inflating properly after the surgery and the bronchoscope procedure I had to endure; depression, anger and self image issues... SO many things to overcome, but with the help of my angel, Lea Ann, and the help of my family and friends, and the medical staff, somehow I was overcoming them. Slowly to be sure, but overcoming them... even though I did not notice it at the time.

Release day! Holy crap today I get to go home! I'm actually excited and a bit nervous too. I have gotten good care here at the hospital and going home is a bog step, but I feel I can do it. We are getting my stuff together to leave. We meaning Lea Ann is.  I am lying there in the bed telling her to take this and take that. Some of the stuff I am saying to take she is a little leery of taking, so she asks the nurse while she is in the room doing her checks. Sh says, and I quote, "You are getting charged for everything in this room. Whatever you don't take we have to trash. Aside from the bed linens and towels and other hardware and such." Having heard that we are taking everything that is not mailed down. Gauze and tape and ointments... literally anything that is not nailed down. Everything in that room was used on me, by me, or for me, and if that nurse says what is not taken is trashed, we are taking it all. We will use a large majority of it up at home later on. After the packing is complete and Lea Ann has made a trip or two to the car to load the trunk, she comes back up and we get a final hospital visit from the surgeon. He is still marveling over how quickly I am healing, however he still says I need to exercise more. Honestly I probably should have been walking more. I don't remember taking one walk while I was on the floor, and as we know I avoided them in ICU whenever I could. Well, I will have to walk around the house when I get home so that will be enough. He gives me the do's and don'ts about the J-Tube that is still in my stomach. I have to flush it once or twice a day with warm water and let him know if anything seems wrong such as it not flushing or getting red around where it is inserted or if the sutures come out that are holding it in. They are NOT going to feed me through the tube at home unless My weight loss gets too much.  At this point I am losing weight at quite a clip.  I started this journey at 360 pounds.  I am now down into the 260 or 270 or so range and still dropping. They will speak with the home health nurse that will be assigned to me as well as the physical therapist. I will be going home with oxygen tanks and they will install an oxygen pump at home as well. The tanks will be used when I am out, the pump when I am home. I will be given a walker for support, and a cane if I want one later. I have literally a plastic shoe box full of pills and breathing medications to take every day. Not to mention the prescriptions that we have yet to get filled. They brief us on all that and Lea Ann promises that I will take them religiously, as do I. Next up, we talk about the Power Port that will be inserted under the skin in the upper right side of my chest in a few weeks. This will be done the same day as my first chemotherapy session and it will stay with me until the therapies are complete and for a while after. The insertion will be an out patient procedure at the hospital, then I will go directly to the cancer center for the first round of chemo. The chemo medicine I will be getting is a combination of Cisplatin and 5FU. These chemotherapy sessions will be once a week for six weeks. To go along with that, I will be getting radiation Monday through Friday for the same six week period. That will put the end of my therapies sometime in the middle of April. Also, while at home, I will have a home health nurse coming once a day for a while, then she will slack off. I will also be starting with a physical therapist to help start regaining my strength and body mass. We shake hands and I thank him and away he goes. In comes the nurse with a little cart with a green oxygen tank attached to it. she leaves it at the foot of the bed. I'll be using that until the home health people deliver and set up the oxygen pump. Then the respiratory therapy person comes in and gives me my final nebulizer treatments for the lungs and breathing. I must say I am quite happy to be done with these. That one smells SO bad and seems to take an hour, then I seem to taste it for a while afterwards. Once those are complete, the nurse takes out the last IV and covers the entry point with a fresh gauze pad.  I can remove it in 30 minutes or so.  I excuse myself to use the restroom one last time and get dressed in my own clothes for the first time in more than two weeks. They are rather big on me now, but I rather expected that. I exit the restroom and settle into the wheelchair. They put the portable oxygen on me and show Lea Ann and I how to use and set it. Lea Ann smiles at me and asks if I am ready to go. I nod and the nurse smiles and off we go with everything else that she had not loaded into the care before hand. I have to get used to this part. I am one of those guys that always has to drive. Always. Until now. They won't allow it because of all the medications and all. Yet another thing taken away from me. Don't get me wrong. I fully trust Lea Ann and her driving abilities,, I just don't like not being in control. In this case, I don't have any wiggle room, so I just have to deal with it. We get downstairs and have to wait for Lea Ann to bring the car around. I thank the nurse for her good work and ask her to thank the rest of the staff for me. She says she will. Lea Ann drives up. The help me into the car and put the little oxygen cart beside me. The walker goes into the back along with my clothes and all the other stuff we took. The doors all close and away we go... Heading home after almost 3 weeks.

I considered this another hurdle cleared. Home will be a welcome sight and feeling.  Lea Ann and our kids and the dogs and familiar surroundings and all. And my recliner. I am definitely looking forward to this.

Thank you for patiently waiting for this post.  I will do my best to make the next one a lot more timely.


Joshua Antanaitis said...

It's a great thing you're doing, sharing your story Brian. :) Great to hear your good news.

Brian Brown said...

Thank you Joshua. I am hoping that it will let people see through my eyes, and my wife's to an extent and understand maybe some things they may not have before. Maybe also letting those going through it to know they are not going alone and others have followed similar paths. :)