Two Weeks on TPN

Well, it's been two full weeks that I've been on TPN and it continues to be a very positive experience. The best part is that I am eating real food every day without any ill effects - no reflux, no diarrhea - and that alone has boosted my spirits. I also have more energy to the point that, a couple of days ago, I went on a cleaning frenzy and got rid of all the clutter that had accumulated around the place. feels really great to have that out of the way finally.

Yesterday the dietitian in charge of making up my formula called to see how things are going. I asked about the lack of weight gain and she said that was as she suspected because she had intentionally kept the calorie count down (1600 cal.) because she didn't want to overwhelm my body to start off. The next batch of formula will have an additional 300 cal/day which should mean that I will gain an average of 2 pounds/week. Sounds good to me.

It's All Good

First of all, my hand, although I am experiencing some pain, is doing well. No pain killers for well over a week now. Yesterday my hand slipped while turning on the stove and I banged it and that hurt like hell but the pain subsided pretty quickly so no real harm done. I'll just take it as a warning to be more careful in the future. On November 26th I will be seeing an OT to see if we can do something to make my middle finger more functional. It is currently displaced away from the thumb so I would like to see if it can be helped to move back more towards the thumb so my hand will be more useful.

TPN continues to go well also. I decided that I would weigh myself each Friday, thereby avoiding potential disappointment by checking my weight every day and seeing no progress. Well, I was still disappointed this past Friday when, after one week, there was no significant weight gain. Perhaps I'm expecting too much in such a short period. I can't be entirely certain about the accuracy of my bathroom scales but I may have gained a pound, possibly two, in which case I would be delighted. At worst, I have stayed the same which I can also live with. I should also mention that I have not, as suggested by my dietician, done any G-J tube feeds in this time period, nor have I been drinking boost every day. The reason is that I am simply enjoying not feeling bloated all the time and, even better, I am taking food orally on a regular basis and my bowels are handling it just fine. I've even stopped taking the pariet and have not had a single bout of reflux. This makes me think that it may have been my formula which was causing the problems previously.

Need I point out how much I am enjoying eating real food again? Today, for example, I have had scalloped potatoes and meat loaf which my daughter brought over. For dessert I had Oh Henry bar pieces and I have also had tea, hot chocolate and just finished a coffee. And I am still hungry but will resist eating more as I don't want to overdue it. A couple of weeks ago this would have been unthinkable.

So, in summary, I am feeling much more positive about life again and that's got to be a good thing.

Update

The past couple of weeks have been very busy. The amputation site is healing very nicely and I suspect that stitches will be removed when I visit the hand surgeon tomorrow. The pain is best described as intermittent and varying but overall mild to moderate. Some days it is sharp and stabbing and others a dull throb but always isolated to the stump and phantom finger.

Today, with our third class, my daughter and I finish our training sessions for TPN . The PICC line was inserted in my upper left arm yesterday, a quick and painless procedure. Tomorrow my supplies arrive and I begin my TPN feed and before you know it everyone will be calling me chubby cheeks.

Update: It's now Friday. First feed went well. I even woke up this morning feeling hungry and that has not happened in a very long time. Had a pudding cup and an Ensure which pretty much filled me up.

I was right about the stitches, they were removed yesterday. The hand surgeon was very pleased with the way my hand has healed as am I. Here's a pic if you're interested.

Post Op

The surgery went very well. Everyone at St. Joe's was amazing. Used a nerve block, actually two, and only needed a little over an hour of the two hour scheduled. Had a decent night's sleep getting up once for a percocet which kept the pain to a dull throb. Home care nurse came just before noon to change the dressing which gave us an opportunity to snap this picture. My son Mike stayed the night and did a great job of looking after me.

SI have an appointment to see the hand surgeon tomorrow.

And finally, a big thank you to Bea for helping me get through the day.

Surgery & GI Developments

Had a 3 hour pre-op meeting yesterday. The only potential problem centred around the type of anesthetic that would be used but after much debate and a consultation or two they decided to go with a local rather than a general. Phew, for a while there I was quite concerned because they wanted me to shave my moustache which I've had for pretty much my entire adult life. So, surgery is a go for Tuesday. Not looking forward to it at all.

On Thursday I saw my GI doctor and the result of that visit is that I will probably be going on TPN although we are trying a double course of antibiotics first as one last stab at cleaning out my gut. In order to be prepared for the TPN, my daughter and I will be attending training sessions in a couple of weeks. My daughter will be the one to hook me up at night and unhook me in the morning as I won't be able to do it myself. We will probably use a PICC line instead of going into the chest directly. The plan is to try TPN for a couple of months to put some weight on, 20 pounds or so, and then go back to the tube feed. but it's all pretty much up in the air for now so we'll just have to wait and see what develops.

Add this to the surgery and I'm feeing a little overwhelmed right now but am trying to remind myself to just take one thing at a time. In the meantime, it's a beautiful fall day so I'm going to take my dog for a walk and enjoy the sunshine.

Coping Well

The pain is now under control but I'm still coming to terms with the upcoming amputation. I am able to use my finger at present and it seems odd that, in a week and a half, it won't be there. I mean, it's functional and I look at it and it even looks fine, well, that part not covered by bandages anyway, and I just can't imagine it being gone. And then I was clipping my fingernails the other day and I realized it would be the last time I clip that one. Too weird.

Just some random thoughts on what I'm feeling right now. It'll all be fine I know. If you are interested in seeing the wound, I have posted an image on Flickr. Beware, it's not pretty.

Amputation

Yup, that's right, amputation was the verdict when I saw the hand surgeon today. As soon as he unwrapped my hand he matter-of-factly stated "I can't do anything with that. It [right index finger] will have to be amputated." I asked if he was serious but of course, he was. The bone is open to the air and is surrounded by cartilage and tendons - all the skin is gone. Not a pretty sight believe me. If all goes well over the next two weeks, I am slated for surgery on Tuesday, October 19. Guess I'll have to learn a new method for tripping the shutter on a camera. Shouldn't affect my guitar playing though. As for every day activities, well we'll just have to wait and see.

For now I just have to live with the pain. The doctor used some surgical scissors to remove tissue from the wound today and just now, 6 hours later it is settling down some.