Home Now

Post Surgery

Well, the surgery was two weeks ago. I’ve been recuperating and traveling. The first week was spent at Sanoviv’s more supportive level, with nurses available around the clock checking on me. I wasn’t overly drugged even the first day so I was awake and aware. We learned about what had been done, as I’ve already written about. It was a long process of just lying there, or getting up and moving about. I learned how to empty my own ileostomy bag, which needed doing relatively often, because I began to EAT that week! We started with just clear liquids, then a few days in, some pureed foods, and then they started me on certain soft solid food. Aahhh. It definitely required some balancing to not do too much too soon, but I was officially on my way at that point.

Back to My Own Room

After some time it was decided I was well enough to go back to my own room. Sleep in the regular bed. This was actually a double edged option, as the bed was hard enough, and I’ve lost enough weight that I don’t have a lot of cushion left, so pressure points, and even some small bedsores, building up made continual turning necessary. However more positions are possible in a regular bed than in a folded up hospital bed so it proved helpful.

Also, I could actually have my own prepared meals in the dining room with everyone else, and sometimes the others were jealous of what I got because it’s specific to me, and not necessarily what they advocate for everyone all the time. Chicken and mashed potatoes, for example. It was such a luxury to have such good meals prepared for us, for all of us! My companions enjoyed their week of service and good, delicious meals.

I had all my check outs the day before we flew. They provided a 3-ring binder of the whole course of treatment, and further recommendations including prescriptions, supplements, and nutritional recommendations. Very impressive.

Travel Home

Montana, my anchor companion for this trip, had the extra duties of getting me packed up, and organized, and out the door, in addition to having to learn how to change the ileostomy bag, and general care taking. So Whew! Got out the door on Thursday, rode in the shuttle to San Diego’s airport, through the Mexican border. That was an experience, mostly uneventful, but time consuming, and allowing us to see a hustling side of people living on the Mexican border, wanting to sell all sorts of things to the people in line, some who would be waiting hours. We managed to avoid all temptations, and get through the medically expedited gate in about 15 minutes wait.

We were quite early to the airport, in order to not be late, and all travel was seamless from there. It is also a luxury be wheel chaired through the airport, and to the head of the line when boarding. On Southwest we had first choice of seating so I sat at the front of the plane, close the bathroom. It was interesting watching the crew interact. And to remember back in the days when the cockpit would be open during the flight and you could go talk to the pilots. Those were the days.

Surprise!

We arrived in Denver early, to be picked up by Grant and Emilia, when lo! and behold! it became apparent there was a whole welcoming party waiting with a sort of pseudo party bus (unfortunately not at all as advertised but it was too late to turn it away) to drive back home and have delicious dinner prepared by our friend and restauranter, Hannah. I was so shocked, it was the last thing in my imagination to have everyone there, and many had taken time off of work, or driven extensively to make it happen. So Grateful. I was tired enough I came home and installed myself in bed, but was able to have visits with everyone as they milled around and ate and interacted. Will never forget that.

Recuperating at Home

So now I’ve been at home about six days. It’s been challenging to not have Sanoviv’s care, because then the care I need falls on my chosen family of Grant and Montana. They are stepping up but I’m sorry they have to. Eternally grateful. Forever in debt.

The issue now is getting weight back on. I am scarily skinny now. We saw a GI doc today and she wasn’t panicking yet, but I am pretty hard to look at. I had a good cry this morning. She says it will take 6-8 weeks to get back up to normalish weight. In the meantime I’m being prepared good food, and also have a nutritional shake called Kate Farm which is complete nutrition and 500 calories a container. The nutritionist would like to see me get two a day of that. Hopefully we can get it set up so that insurance pays for it.

Without the weight I’m also extremely weak and fatigued. It makes every little thing so difficult. I’m doing a lot of resting. I can’t do much else. I’ve never felt so disabled, and dependent. Thanks again to Grant and Montana for caretaking.

The most difficult part of the whole new situation is the ostomy. It is a hole in my side, in my small intestine, which drains out the food content that hopefully has been absorbed but which still can’t go all the way through. The back of the bag holder is stuck on with adhesive and tends to fail after two days, so it is something we needed to know how to replace at home. We, mostly Montana, got trained in the hospital, and have been practicing the fine craft of getting it to stick without leaking, and I think we’ve got it now, but Saturday we had three failures in one day. I saw at the GI’s office today that there are routine ostomy support groups, and man, I can see why. The doc today also referred us to the ostomy nurses at the local hospital who will have tips and tricks and maybe prefer different supplies that work better or something. That appointment is not yet scheduled.

So we’re on our way, slowly but surely. Thank you for your continued prayers, positive vibes, good thoughts.

Stop the Presses!

Well. The GI doc ordered blood work and a good thing she did: my sodium levels were dangerously low. That’s probably why I have been feeling so weak and fatigued. I got a call last night saying, “Go to the ER!” So we did, and they’ve admitted me to get that level up. I was probably dehydrated as well. In any case I’m already feeling better.

It seems the gist of it will be making sure my food doesn’t go through me and into the bag too fast. Balance of intake and output is necessary. So we’ll be working on how best to do that.

Sounds like I might be here three days so they don’t bring it up too fast. Sort of ugh. But I have been having a steady parade of helpers, including ostomy nurse, physical therapist, chaplain, dietician (I’m horrified about what they serve here to patients, so much Standard American Diet), palliative care team member, and probably someone else too.

It was super helpful to have the ostomy nurse come. Wealth of information! Mostly about the different types of “appliances” that are available. She recommended something that will likely work better for me, and put it on, explaining best practices along the way. It was a little eye opening, and nice to have support.

I also enjoyed talking to the chaplain. Very nice experience. He was here more than an hour, I believe. Good and grounding.

So now that’s what I know for now. Every day is an adventure!