Update on Ben

Where does the time go….

The last time I posted Ben was just coming up on 3 weeks in the hospital and was going to be released under Hospice care (hospice – such a scary word isn’t it?). Ben was released on Tuesday, September 23rd, and I was as nervous a mouse hiding in a garden of catnip.

I remember reading all of Lainy’s posts years ago about Hospice and how wonderful they are, and I will say they have made the whole transition so much easier. The first week was definitely “trying” for me physically and emotionally – getting all the equipment (bed, wheelchair, oxygen, meds)- but Hospice really takes care of everything and it was amazing how quickly they had everything delivered (I called them Tuesday morning and all necessary equipment was there Tuesday afternoon).

The first few nights were nerve-wracking – going from hospital 24×7 care to….me. Ugh. However, when Ben was released he actually was in decent shape – while he had a biliary bag to drain the ascites/bile that seemed to be pooling in his liver and a pleurex to take care of overflow in the lung, he pretty much was able to get around on his own with a little help. (To this day the wheelchair, bedside commode and walker are still in the garage)!

The nice thing about being out of the hospital is SLEEP! I’m still amazed at the number of interruptions that occur in a hospital- I realize that doctors and nurses and food and vitals and meds, etc. need to be administered – but I’m quite appalled at the number of times patients are awoken for somewhat minor things. ( i actually tracked it one morning and in a 2 hour time span I think I documented 11 interruptions)!!!

Anyway -once at home, Ben regained strength pretty quickly in a few days….he could get up and walk around (briefly) with just a bit of assistance. The first Saturday he was home he was feeling so well he did a walk around the outside of the house to critique the yard work….he kind of over-did it and ended up in pretty severe pain that night which we made the mistake of not getting in front of earlier. So – I spent a sleepless night on the phone with Hospice nurses administering morphine by mouth, etc as he was having severe pain and respiratory distress. Needless to say I was scared *&*@less. We learned our lesson – DON’T try to be TOUGH! Get in front of the pain, once you get behind it it takes so much to get it under control (just like the hospice nurse said). If you get one thing from this post – STAY AHEAD OF THE PAIN!

The two weeks since that event has been mostly uneventful. While Ben sleeps a lot – A LOT! He is actually in very little pain these days, just maybe one pain pill a day. He is still draining bile/ascites into his bile bag, some days more, some days less (i’ve calculated on “heavy” days it’s about 50cc’s per hour, and on “light” days he can go almost 24 hours and get 300cc). I haven’t made any correlation yet.

I was happy that our GI/Oncologist from MD Anderson called me personally two weeks ago to check on Ben, she said he was such a fighter – and she hadn’t given up and was still hoping he might be able to go back to the battle with Chemo again. His local oncologist called me last week and he said if he stays stable and gets his strength back and gets bored – we should consider chemo.

I’m not really sure how all that will play out. His last few rounds of chemo had really completely worn him down and that’s when the infection started – however, just sitting around at home watching the bile flow doesn’t seem like a great alternative. I know Ben doesn’t like it one bit that nothing is happening – so, I wouldn’t be surprised if he might find his way to another chemo treatment – but to do that we would have to come off hospice at least “temporarily”. (Hospice really is a great option…I won’t go into detail now, but it really can be the best of both worlds, a much better option than a nursing home and certainly better than a hospital…and it doesn’t mean that you will be dying in a few days which is what most people think).

So, that’s my long ramble for the moment. Meanwhile, Ben is hanging in there, and honestly doing much better than I expected. We have some happy moments, sad moments, loving moments and a little laugh here and there (just like Marion and Lainy had assured me). I work for a great company and I have been working from home full time (luckily enabled by amazing technology) so I can still be productive and keep an eye on the King! (that’s our friends nickname for him – King Ben!)!

Thanks for listening.

Tom

I guess the good news Julie is that Ben has been around so long that there is so much to read!! And while I don’t post often, when I do I can get kind of wordy….

Hello everyone. Thanks for all your support. This board is as amazing as ever. Julie, you must have read an old update if mine from a couple years ago…but rembering the “praying for poop” comment again did make me laugh. Ben has been on lactulose for a couple years to help control ammoniaevs so pooping is never a problem these days.

Things are a little better since my last post. Ben had a chest tube put in a week ago for lung drainage, and that went to minimal flow and they took that out today and replaced it with a pleurex (small drain that we can suction out a few times a week). His pain had been pretty and from that chest tube so with that gone his pai level has gone down significantly and he hasn’t had any pain meds for the last 12 hours which is good news as he can get pretty loopy.

Fluid output from his biliary drain hasn’t abated. He put out 3600 ml yesterday. They are giving him 2400 ml through IV per day and he drinks a lot of water. Today, his GI doctor is cutting in IV in half to see how he reacts to that so at least it will help stem the constant output (which has reduced now), but as he said it’s all a balancing act.

I met with home hospice today. We are trying to take him home by mid-week. I was worried that hospice wouldn’t provide IV fluids or antibiotics but was assured that hospice care has changed over the years, and while the goal is palliative care they will do some additional care to ensure comfort.

Ben is pretty good, he went for a walk today and his appetite is still there so he’s eating as well. He does say he feels muscle cramping but with all the fluids in and out they is likely some imbalance that I’m going to follow up on.

Bens two brothers are here to help out so I get some time away from the hospital. Yesterday I actually watched half a movie and took a little nap. So that was good.

So that’s the “stable” news for now. Thanks again for all the love, support, positive vibes, etc. Luckily because of this board, I’ve always known what to expect so I wouldn’t be surprised. I can’t say it makes this phase any less sad, but I’m prepared and I feel the knowledge allows me to make much better decisions.

Tom