I ve been home from My Hospital experience now for 30 days. It has not been what I expected.
It is wonderful to be here at home, to see my kids. they stop over often. It is a comfort.
I still have a fistula, the opening from my stomach to the outside of my chest. A speical apparatus overs the wholes, but it still drains.. than about every 3 or 4th days it breaks open and a nursing service must then come and fix it to stops it from leaking all over the place. This is very tryiung. and it is because of this, that:
Since my 4th day home, the doctors has made me NPO. Nothing my month. So although for the first few days I was able to enjoy food, my mothers cooking, that ended quickly. I have not eaten all month.
Throughout this month i have weighed 103 to 105 pounds. However, a turn for the worse over the weekend and as of yesterday; 99.2 pounds. Very much scary. 99 pounds.
'
I am on tube feedings at night and hook myself up at 4:00 here in bed and the tube food gets pumped in for trhe next 16 hours..so, a abit boring lying in bed for 16 hours... but my son, just this week but a router here in my parents computer and I now have wi-fi Thanks Adam..
'I am very weak and can't seem to sit in a chair for more than an hour.
and I can not remember my password for my yahoo email account. so for those who have written me via yahoo, thank you, burt I can't acess it now, hence why you have not heard from me. It has been a very frustrating time this month....
I will hope September will be better...
I still hope to go back to my apartment in early september.just for the change . Hey is might be just wht I need. ;-) I do hope for a better month ahead. Heck ... it just can;'t ny worse than Augusut, can it?
take care.... - Scott
Monday, August 27, 2012
Saturday, August 11, 2012
Home for 3+ weeks
First I want to apologize, I have been somewhat remiss in writing since I have been home from Pittsburgh.
But it have found it hard to sit at the computer for any length of time....
Let me fill you in on the healing process now that I am home...
So it has been about 3+ weeks since coming home from Pittsburgh via a 4.5 hour ambulance ride to Rochester...it was nice to be home.
I spend 96 days in the hospital in Pittsburgh and was looking forward to eating Mom's cooking and gettting heavier. I weighed 132 pounds when I was admitted for the surgery in April. I weigh 103 NOW. I am reallly skin and bones. Lost most of what Hair i had as well and don't look a lot like me.... but time will make that better...
I have two holes iin my chest. I have a colonoscopy and a fistula. The fistula is an aberration that occurs from time to time with this type of surgery and I won. I have one. It goes from the my half a stomach to the surface of my chest and must heal itself from the inside out.
as I was saying.... the fistula was healing but upon arrival at home it doubled in size and I was immediately plaed on no food. NPO. Nothing but jello. So i have nothing to eat by mouth since a few days after arriving home and that was 3 weeks ago. I AM hungry!!
Plus my applicances that are now part of me that coffect fluids, from my body constsantly break...every day, so I wake up in the middle of the night covered in excretment...or really any time. Like this morning, it once again broke open and I am waiting for the home health nurse to arrive to repair it.... not pleasant! It is tiring and not fun.
so you could say I am healing at home... but it is a slow process. I reallly want to eat...
and the energy level i have is close to non-exisistant. The food I get by tube into my body barely covers what I expend each day so I am really quite weak.... and tht is not fun either...
so this is the news from home... 3+ weeks into being home.. But it IS nice to be home instead of the hospital and it IS nice to have family around,,,but I AM frustrated and just wish to have my strength back, wish to be have this fistula closed so I can eat once again and wish to start gaining weight once again...
maybe tomorrow....or next week.... hummmm Hope so.
so now this is Scott....
But it have found it hard to sit at the computer for any length of time....
Let me fill you in on the healing process now that I am home...
So it has been about 3+ weeks since coming home from Pittsburgh via a 4.5 hour ambulance ride to Rochester...it was nice to be home.
I spend 96 days in the hospital in Pittsburgh and was looking forward to eating Mom's cooking and gettting heavier. I weighed 132 pounds when I was admitted for the surgery in April. I weigh 103 NOW. I am reallly skin and bones. Lost most of what Hair i had as well and don't look a lot like me.... but time will make that better...
I have two holes iin my chest. I have a colonoscopy and a fistula. The fistula is an aberration that occurs from time to time with this type of surgery and I won. I have one. It goes from the my half a stomach to the surface of my chest and must heal itself from the inside out.
as I was saying.... the fistula was healing but upon arrival at home it doubled in size and I was immediately plaed on no food. NPO. Nothing but jello. So i have nothing to eat by mouth since a few days after arriving home and that was 3 weeks ago. I AM hungry!!
Plus my applicances that are now part of me that coffect fluids, from my body constsantly break...every day, so I wake up in the middle of the night covered in excretment...or really any time. Like this morning, it once again broke open and I am waiting for the home health nurse to arrive to repair it.... not pleasant! It is tiring and not fun.
so you could say I am healing at home... but it is a slow process. I reallly want to eat...
and the energy level i have is close to non-exisistant. The food I get by tube into my body barely covers what I expend each day so I am really quite weak.... and tht is not fun either...
so this is the news from home... 3+ weeks into being home.. But it IS nice to be home instead of the hospital and it IS nice to have family around,,,but I AM frustrated and just wish to have my strength back, wish to be have this fistula closed so I can eat once again and wish to start gaining weight once again...
maybe tomorrow....or next week.... hummmm Hope so.
so now this is Scott....
Tuesday, July 31, 2012
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, July 24, 2012
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.
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, July 20, 2012
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!
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, July 18, 2012
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
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, July 3, 2012
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
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
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