Day + 45

Sorry its been awhile since my last update, but the big news is that I am home and have been for 2 days now. Like I have mentioned before, being home is a lot of work and it has really taken a big effort to get settled in again. With the addition of the Home Health provider visits and the TPN setup and take down every day, we have added to the stress and timing of getting everything in the confines of my limited day. As far as changes in my health- there is nothing really to report. The Doc's are going to ride things out for awhile and give my current meds time to do some work, so we shouldn’t be looking for anything spectacular to happen any time soon. As Karen has said “slow and steady” is progress. One thing to mention is, that they have upped my diet a bit more. I still can't have anything dairy or solid, but its a few more food options. You would be amazing how many “non-solid” foods contain dairy, think about it. OK that's it for now, don’t be surprised if my posts stay low for awhile as there shouldn't be much to report, but as soon I have news I will let you all know.

Tony

Day + 42

It is starting to look like the slow recovery process is working. At least enough so that they are talking about releasing me as early as tomorrow. We are still dealing with most of the issues and nothing is really going to change but my location. I will still be taking in food via TPN and all the same meds, they will just be from home. This comes with mixed feelings- on one hand it would be great to sleep/be in my home again (its been 20 days). In fact, of the last 50 days I have spent 45 in the hospital. On the other hand doing everything that is done in the hospital from home is a lot of work. A lot. In addition to doing the stuff at home, I will still need to make a daily visit to the clinic. Which in itself is a chore. We have an hour drive up to the clinic then get blood draws and wait about an hour to see if additional meds are needed, if so then administer meds (maybe 2 more hours), then another hour ride back home. Total average time 5 hours, and we get to do this every day Mon-Sun. Although I have gained a lot of energy, the clinic visit and home health tasks are going to take a lot out of me and my care-givers. We are willing to give this a try again but it is questionable as to how really-helpful this might be.

I just wanted to add a note here regarding care givers. You all know that I have Karen watching my back and helping in so many ways that I can not mention, but additionally, I have had my mom out for 3 weeks and now my sister in-law, Tracey for 7 weeks - both from Chicago. Their day to day help is so very hard to describe. Their help runs the gamut from helping with meds and getting dressed to just being in the room when I come to from a drug induced nap. I am so very grateful that they have been able to be at my side as we go through this process. THANKS guys...(thanks everyone...)

Day +39

It has been a few days now so we thought I should post an update. We had a few days of fevers since I last posted and they had been the big issue. My temps would spike around 102+ and always in the early AM hours. I know 102 is not that bad but when you are already in a hospital bed for 10 other things adding heat to things doesn't help. It made it nearly impossible to rest (let alone sleep) with all the creams and lotions all over my body treating some of the graft verses host disease (GVHD). So getting your skin hot and trying to sweat under the stuff puts things on a whole other level. The docs have adjusted my meds and we are happy to say that I have not had a fever in over 24 hours. In fact the docs have made quite a few tweaks to my meds, first off they removed the order for all the lotions (and potions) and second they have changed most of the medicines from IV to oral. I don't want to presume too much here but last time that was the indicator of a ticket home. I am still on TPN and only allowed to drink fluids but we hope to work on that in the coming days. I may have to go home with the TPN. Man, I am starting have some real cravings for solid food, its been 16 days of the TPN stuff. Oh, one more med was removed - the “pain” med I had been on - continous drip of fentanyl- since I got here so it has been interesting to just be cut off, but things have been fine without it. OK time for a nap, thanks everybody for EVERYTHING - talk again soon.

Tony

Day +34 - Tony here again!

No big mile stone or anything today, just an up day. Things are still progressing in the right direction, although seems very slow from my point of view. The biggest thing is that I have some decent usage of my hands and eyes, enough so that I am able to type this post myself. I added two photo's to try and show what my hands have been looking like (my eye's looked about the same but we don’t have photos).  

OK just a rant here. I always knew that there would be a chance I could spend some serious time in the hospital as I went through this process but I just didn’t think how it would happen. I told myself that if I need to stay in then I had tons of things I wanted to do. I would put in a few hours a day of remotely working, read a few books I have been saving up, learn and play a few computer games, research and plan out activities for when I was healthy again. Unfortunately, I don’t think I really could have prepared myself for any of this. Like I said above, things are going in the right direction and I am truly happy for that. Just having some use of my hands and eyes is having a big impact. I know my hospital time of only 35 days total, is nothing in the grand scheme of things but for today, for me, it feels like a lot.

That's enough ranting for now, I am switching back to the positive mode and ready again to capture all the positive vibes (and well wishes) you are all sending, please do keep it up. I know you are all rooting for me and just the knowledge of that helps in ways that words can not describe.

Thanks Everyone!

“We measure progress in weeks” Day +31

Karen again. Tony is progressing. We have not updated in a few days, because the progress Tony is experiencing is incremental by day. But from 1 week ago, when he was re-admitted, he is certainly improved, but not at all back to what he was when he was initially released. His eyes are slightly better, his hands are getting usable again, but his “gut” is turbulent.

Doctor S sees him staying in the hospital another week, maybe a little longer. We'll update again in a few days! Keep fingers crossed for continued forward progress – measured weekly! :)

Care-giving too well??? (Day +26)

There is such a thing as being too good at taking care of someone. Or so the Doctors are telling us. Apparently, if Mom and I were not such good caretakers, the Mayo would have had Tony back in-patient several days sooner. This did not make Mom and I very happy when we heard it yesterday. In fact, we cried. We feel like we made the situation Tony is dealing with last longer because the doctors had so much faith in us. We made it worse.

OK, we know that is not REALLY true, but...

Tony has been In-patient now for 2 days. The doctor is quite sure we will be seeing progress, Tony will be feeling progress, but it is going to be SLOW! Even now, when Dr. S and our PA look in Tony's mouth, they can see active healing and this is good!! However, we are ministering to Tony most of the time that we are at the hospital with him. He has large amounts of liquid coming out of his eyes that needs to be cleaned away, gently, and then he has 2 drops and 1 salve to put in his eyes. (we can see improvement there since Friday) Then his lips are cracked and ulcerated, so we clean those, also gently, and apply a vitamin salve. (we see improvement there since Friday as well) He is getting several salves on various parts of his body and a wound care specialist is looking at an additional one for some painful sores Tony has in unmentionable places. So, we are lubing him up several times throughout the day. The Doctor also says his skin rashes look improved. Again, the improvements we see will be incremental and slow, but improvement none the less!

He will be on IV fluids and nutrition for at least another 2 days, if not more. Initially, I had said he would be in the hospital 'til about Friday, but its possible it will be longer. We will see.

Our big drama today was about an enema. Tony is going to have some scopes done- upper and lower GI- and normal procedures are to get an enema before hand. Well, one of Tony's unmentionable places is where an enema would be administered and where the results would come out. This is not the time for additional, painful things to be done to that area. So, we all were stressing out for part of the day because the GI Doctor seemed to be insisting on the enema and Dr. S. had told us earlier that is was not necessary. Sooooo, Dr. S. to the rescue! No need to put Tony (and us) through such a potentially painful and embarrassing procedure. So, now we just need to deal with the possible pain and discomfort of the GI scope invading that oh so painful and private region! :)

One last thing - check out the number of pumps and bags and tubing running into Tony!

Day +24:

Well, we were told it was possible that additional in-patient stays would likely be necessary. Today, that became true. For no “bad,” scary reason, Tony's Doctor decided to admit him today. She thinks he'll be in the hospital 'til Friday. This is Tony's “real” doctor, Dr. S. We LOVE her!!

OK, here's the story. We mentioned recently that Tony has mild Graft v Host disease. Well, now it is moderate. Still nothing for alarm. We went for our normal appointment today and learned that Dr. S. is the Doctor for this coming week. She planned on stopping in to see Tony while he was there. The nurse determined that the sores in Tony's mouth are blistering. For the past 2 days, Tony has not wanted much to eat AT ALL and has had little to drink. So, a few hours into the visit, Dr. S. came in. She did a physical exam and spoke to Tony quite a bit and determined that the best place for Tony is in the hospital. She thinks he might have developed GvH in his “gut” and so she wants him to be on IV fluids and IV nutrition. (For you healthcare people out there, that is Total Parenteral Nutrition) (for you non-healthcare people out there what that means is this: All of Tony's liquids and foods will be bypassing his stomach and even his intestines and will be going straight to his veins.) This will give his “gut” a chance to relax. Also, then, Tony will be receiving almost NO medicine orally. Once again, to give his “gut” a chance to take a vacation. The goal with this hospital stay is just to give his body a break so it can focus on healing. We are hoping he will take every opportunity to use the medicine and skills of the nurses to do just that!

As for Mom and I. It is almost a relief because hard as we tried, we were not getting everything he needed into or onto him. Its a fine balance between pestering and caring. Now the Mayo can deal with that balance for a few days.

Thanks again to all for your support, seen and unseen. It means more than you can possibly know.