Tuesday - Update (7/31)

The past week has been great. Stopping by and seeing Dad frequently has been so wonderful, and Allie and I take the opportunity frequently. Over the past week Dad has been visited by many nurses all trying their best to get him back to good health. He has been eating a lot of great home-cooked meals and has been walking around without the use of his walker (great stuff!)

There has been a major set-back though. Because he is eating so much the fistula in his stomach is not closing; instead, it is leaking a lot of fluid. So, his wound is now cleaned daily while his stomach continues to leak. The doctor has ordered NO FOOD until the fistula heals, which could be two weeks or more. This now means he is back to only enough water to wet his lips, twice daily glucose drips and an entire dependency on his J-tube feeds which are administered nightly. 

It's difficult to see Dad taking all of this in stride--he certainly could use some distraction and relief! I'd like to say that he is ready to take phone calls and maybe even some visits (depending on how the next couple of days go--today is day 1 of no food). His cell phone is on and he is taking calls. His parents' line is also connected and he has a little station next to his bed where he'll spend 4-hours at a time while the bags drip. If you need his number please email me directly.

Adam

Tuesday - Update (7/24)

Dad is back, safe and sound, in Rochester!

We are all so happy to have him right around the corner from us, finally. He arrived yesterday in an ambulance from UPMC Passavant. He left PA at 10am and arrived shortly after 3pm. Allie and I were there to welcome him home and chat with his visiting nurse. He said the ambulance ride wasn't so great, but we're happy it wasn't a large out of pocket expense.

He will have scheduled PT, OT and nutrition sessions with various different visiting specialists each day until he is well enough to go back to his normal day-to-day.

It was just great to have dinner with him last night. He ate a lot of chicken, pork, rice and brownies. I think he'll be enjoying more delicious meals now that he's out of the hospital.

He should be back on the internet in no time, and he will most likely take over this blog soon. He can give his own personal accounts of his recovering days much better than I can. I'm sure he will be happy to entertain visitors and phone calls this week and for the future of his stay at his parents'. I'll arrange with him the best way to get in touch and post it here.

He is still receiving nightly feeds through his J-tube. The hole in his stomach (fistula) is still present and there is a bag draining its contents. His wound will need to be cleaned daily and the family is receiving some training to help the nurse with this. Dad's attitude is great and he is already determined to get better. Last night he walked up the stairs to his temporary bedroom with very little support from me. He can walk baby steps on his own for 20 feet or so, but prefers to lean on the walker for now until his strength comes back.

It felt good to finally hug him after all these months.

Friday - Update (7/20) !!!

Great news, everyone: Scott is coming home!!

His doctor has approved his discharge home Monday 7/23 at 9am from UPMC. Yes, home. No place in New York is considered an Acute Care Facility so instead of a rehabilitation center or nursing home Dad will be living with his parents in Pittsford, NY until he is well enough to go back to his apartment in Fairport. Dad says he doesn't plan to stay at his parents' long; he's really going to focus on getting his strength back ASAP.

The insurance company has approved a visiting nursing service to tend to Dad while he is back in Rochester. His wound will require re-dressing daily, along with check-ups.

Also, the insurance company has approved his transfer from Passavant in Pittsburgh to Pittsford, NY by ambulance! ...for only a thirty dollar co-pay. Allie and I had planned to pick him up on Monday morning.

So right now the whole family is excited to welcome him home and see him much more often. I'd say he'll be getting exponentially better now that he will be out of the hospital. He'll have much more opportunity to walk around, review emails, take phone calls and appreciate this nice Rochester weather we've been having.

Thank you for everyone's continued support and efforts these past.. wow.. 3 months!

Wednesday - Update (7/18)

Two weeks have passed since the last update. Sorry for the delay, everyone! Fortunately there have been no emergencies or scares during this time, which is always a relief. Yes, he is still in the hospital in Pittsburgh; he is still healing; he is still eating a small amount of solid foods, and he is still waiting break out of that place!

Over the past couple weeks, Dad has been gaining more and more strength. The doctor's are surprised by his accomplishments and his strength. When he walks, he does laps around his floor and last week (when Allie visited) he went outside for the first time in almost 3 months! He says it felt incredible to have the sun on him. He just cannot wait to get more exercise. He had his wound-vac removed so they are trying to heal this wound on its own but it keeps splitting open when he moves around or walks, so he is less mobile than he used to be.

He has been on a soft food diet and enjoys eating a lot! He keeps telling my sister and I all the treats he can't wait to eat when he get's out of the hospital. She snuck in a Wegmans glazed donut in and he loved it! His appetite has lessened because his stomach is smaller and he gets nausea in the evening.

The doctor's forecast him to be discharged within the week. We have heard rumors a specific date, but will wait to share that with everyone until it is confirmed either tomorrow or Friday. The days is near that Dad is back in Rochester!

Adam

Tuesday - Update (7/3)

Dad has been doing very well lately. He is still on his soft food diet: enjoying turkey and mashed potatoes, oatmeal, etc. He says everything is delicious.

He is getting very antsy now that he is on day eighty-something.. He cannot wait to leave the hospital. He takes long walks each day, and his strength is returning. The doctor's say that we will be discharged soon (once they get his white count down a bit).

That being said, it is very difficult working with the social worker who says that no New York State facility will accept a patience with a wound vac (even one that is not on suction or vacuum). Dad is discouraged because he wants to be home with his family, but many homes in Rochester have already denied him.

We've suggested such places as St. Anne's, Monroe Community Hospital, Highlands, Fairport Baptist home. But as far as we know, no place will accept him. If anyone reading this has suggestions, recommendations or connections with local Rochester-area rehabilitation facilities (that can handle wounds--because that's all he has at this point) I'd welcome you're input!

The social worker did mention that a home rehab is possible, which would mean that Dad would be home (either his place, or his parents'). A nurse would make scheduled visits to tend to him, but he would otherwise be on his own (outside of monitored/licensed care). We are reluctant to consider such an approach, but may be forced as the only option to bring him back to Rochester. I know another couple weeks in PA (even if it's closer, like Erie) would not be ideal for Dad--he is ready to bulk up, get stronger and get better! Even more important to him is that he just wants to get back to work!!

More updates to come as they happen, but Scott is doing great and just dealing now with transfer options.

Adam