Good evening all. Just thought I would update you all, not that there is much to say, but here it is. It was my opinion that Jimmy's incision was increasingly red, so I made him an appointment to see our physician yesterday. The doc didn't feel it was infected, but went ahead and gave him an antibiotic because one of the groin incisions looked a little suspect. Hopefully all will resolve shortly and life will get back to some normalcy. I was really worried that he might have to go back in the hospital for IV antibiotics, but so far so good.
Jimmy has returned to work and seems to be tolerating it well. Although, he doesn't really do much but sit at a desk and use his brain. It is good for him to be getting out and about. Jimmy is bringing home a treadmill today to help get in all his walking he needs to be doing. The lifestyle change seems to be going well. We are eating better and trying to be more active. Jimmy was down 5 lbs yesterday when we went to the docs office, so that is encouraging.
I hope you are all having a fabulous 2010. I will continue to update you with information as it becomes available.
Wednesday, January 13, 2010
Monday, January 4, 2010
January 4, 2010
Well, it is official, the surgeon has released Jimmy to leave the state of Texas and follow up with physicians at home. Jimmy is ready to say the least. Today they removed the staples from the sternal incision. Since the groin incisions are more difficult to keep dry, the staples are still in place and should be removed in about another week.
The surgeon was pleased with how well Jimmy is doing. Of course, I have been charged with making sure that the infection clears up. Should it not completely clear up by the time Jimmy is finished with his antibiotic, I am to notify the docs here. So my fingers are crossed that all will be GREAT at the end of the next 7 days.
We have decided, with the doctor's blessings, to postpone the rest of the transplant work-up until March. The congenital heart specialist and the surgeon believe that it will be just fine to wait. Aside from being sore and a little winded with extra long walking distances,Jimmy is doing just as well as he was before surgery. Just a note of clarification. The transplant work-up is precautionary more than anything; Jimmy will be placed on the transplant list as inactive. Depending on what the decided course of action will be from here, they want to have all the ground work laid in case there should be a need for emergent transplant. Of course, we all hope that does not occur, but it is good to be prepared.
Unfortunately, we don't have definite plans for the future. For sure, there will be the testing and work up for the transplant. It is our understanding that when we come back in March we will be presented with the options that are available.
In the meantime, Jimmy and I have made a commitment to making a lifestyle change. As a lot of America, we have fallen into the habit of being sedentary. We have vowed to make changes in our lifestyle and not let excuses get in the way. It is vital, especially to Jimmy's health and I would be kidding myself if I didn't admit that it would also benefit me and Jake. Like I mentioned above, Jimmy does get winded easily at this time, so the surgeon suggested we start slow by just walking until he gets his strength back. I am excited about this change. It is truly going to be an investment in our future.
So what else has been going on? We went to the movies the other day and watched Sherlock Holmes, which we highly recommend if you like comedy, mystery, action and adventure. We have also been frequenting the local Blockbuster and have watched all three seasons of Dexter (a Showtime drama series). Due to sheer boredom we have found ourselves napping A LOT! SO we should be good and rested when we get home. We went to the Beer-Can House, which is house whose siding is literally old beer cans. Jimmy bought a shirt... Then we went to see the giant Presidential Heads. That was really neat. The artist has also made a giant sculpture of the Beatles. It was difficult to get good pictures, because these aren't really on display, instead they are in a fenced yard. We aren't really sure what this man does with his work, but it seems like he should put them on display somewhere...????
So this is where the adventure really slows down. We are leaving Houston tomorrow, hoping to miss all the precipitation on the way home. We are not going to take more than one day to get back home, unless Jimmy changes his mind while we are on the road. The plan is to meet up with Jimmy's friend in Dallas for a quick meal and head on home. We are sure looking forward to being back. Not so much to the weather that we are coming back to, but there is definitely truth in the saying "comforts of home".
I will continue to update the blog periodically to keep everyone up to date with the happenings. Thanks again for all your positive vibes, well wishes, prayers, and continued support. I don't feel that we will ever be able to express our gratitude. But we will certainly try. May you all have a fantastic and blessed 2010! We are sure hopeful this will be more productive and healthy than the last.
The surgeon was pleased with how well Jimmy is doing. Of course, I have been charged with making sure that the infection clears up. Should it not completely clear up by the time Jimmy is finished with his antibiotic, I am to notify the docs here. So my fingers are crossed that all will be GREAT at the end of the next 7 days.
We have decided, with the doctor's blessings, to postpone the rest of the transplant work-up until March. The congenital heart specialist and the surgeon believe that it will be just fine to wait. Aside from being sore and a little winded with extra long walking distances,Jimmy is doing just as well as he was before surgery. Just a note of clarification. The transplant work-up is precautionary more than anything; Jimmy will be placed on the transplant list as inactive. Depending on what the decided course of action will be from here, they want to have all the ground work laid in case there should be a need for emergent transplant. Of course, we all hope that does not occur, but it is good to be prepared.
Unfortunately, we don't have definite plans for the future. For sure, there will be the testing and work up for the transplant. It is our understanding that when we come back in March we will be presented with the options that are available.
In the meantime, Jimmy and I have made a commitment to making a lifestyle change. As a lot of America, we have fallen into the habit of being sedentary. We have vowed to make changes in our lifestyle and not let excuses get in the way. It is vital, especially to Jimmy's health and I would be kidding myself if I didn't admit that it would also benefit me and Jake. Like I mentioned above, Jimmy does get winded easily at this time, so the surgeon suggested we start slow by just walking until he gets his strength back. I am excited about this change. It is truly going to be an investment in our future.
So what else has been going on? We went to the movies the other day and watched Sherlock Holmes, which we highly recommend if you like comedy, mystery, action and adventure. We have also been frequenting the local Blockbuster and have watched all three seasons of Dexter (a Showtime drama series). Due to sheer boredom we have found ourselves napping A LOT! SO we should be good and rested when we get home. We went to the Beer-Can House, which is house whose siding is literally old beer cans. Jimmy bought a shirt... Then we went to see the giant Presidential Heads. That was really neat. The artist has also made a giant sculpture of the Beatles. It was difficult to get good pictures, because these aren't really on display, instead they are in a fenced yard. We aren't really sure what this man does with his work, but it seems like he should put them on display somewhere...????
So this is where the adventure really slows down. We are leaving Houston tomorrow, hoping to miss all the precipitation on the way home. We are not going to take more than one day to get back home, unless Jimmy changes his mind while we are on the road. The plan is to meet up with Jimmy's friend in Dallas for a quick meal and head on home. We are sure looking forward to being back. Not so much to the weather that we are coming back to, but there is definitely truth in the saying "comforts of home".
I will continue to update the blog periodically to keep everyone up to date with the happenings. Thanks again for all your positive vibes, well wishes, prayers, and continued support. I don't feel that we will ever be able to express our gratitude. But we will certainly try. May you all have a fantastic and blessed 2010! We are sure hopeful this will be more productive and healthy than the last.
Last week
As I was reading the blog, I realized that I completely forgot to update you all on Jimmy's from the hospital last week... OOPS!!!
So here's the story:
Jimmy was released from the hospital following IV antibiotics on Tuesday the 29th (I think that was the date). He was placed on oral antibiotics and we had a follow up appointment on Thursday the 31st. Our original plan was to leave on New Year's Day and come back home, however, the follow up appointment wasn't exactly as positive as we had anticipated. Although the redness was CONSIDERABLY improved from last Saturday when I "duped" him into going to the hospital, the surgeon (who was not one we had EVER seen before) was just about to put Jimmy BACK in the hospital for additional IV antibiotics, when the infectious disease doc we saw in the hospital came in to say, oh that looks much better!!! Whew! dodged a bullet there. I thought Jimmy was going to explode!
Instead a wound care nurse came by and gave us instructions on how to better care for the groin incisions. Twice daily dressing changes, continued antibiotics and then a follow-up with Dr. Fraser on Monday, which is today.
Last Sunday we went to the Museum of Natural History and walked for a good 3-4 hours. Jimmy tolerated the walking very well. There was a Faberge exhibit but I was too cheap to pay the extra $ to go see it. Oh well, we had a good time anyway.
So here's the story:
Jimmy was released from the hospital following IV antibiotics on Tuesday the 29th (I think that was the date). He was placed on oral antibiotics and we had a follow up appointment on Thursday the 31st. Our original plan was to leave on New Year's Day and come back home, however, the follow up appointment wasn't exactly as positive as we had anticipated. Although the redness was CONSIDERABLY improved from last Saturday when I "duped" him into going to the hospital, the surgeon (who was not one we had EVER seen before) was just about to put Jimmy BACK in the hospital for additional IV antibiotics, when the infectious disease doc we saw in the hospital came in to say, oh that looks much better!!! Whew! dodged a bullet there. I thought Jimmy was going to explode!
Instead a wound care nurse came by and gave us instructions on how to better care for the groin incisions. Twice daily dressing changes, continued antibiotics and then a follow-up with Dr. Fraser on Monday, which is today.
Last Sunday we went to the Museum of Natural History and walked for a good 3-4 hours. Jimmy tolerated the walking very well. There was a Faberge exhibit but I was too cheap to pay the extra $ to go see it. Oh well, we had a good time anyway.
Monday, December 28, 2009
Post-op day 12: 7:18pm
Well, there has been some changes since I last posted. I noticed that Jimmy's chest incision was red on Christmas night. He also noticed that the right groin incision was draining, hard and red. Saturday morning I called the on-call physician and they suggested that we come in to the ER so that they could take a look at the incisions and decide if he needed oral or IV antibiotics. Unfortunately, they decided he needed IV antibiotics. He was admitted to St. Luke's on Saturday evening after much opposition. He really didn't want to stay; this adventure has been wrought with mishaps...just add this to the list.
Today they switched him from IV to oral antibiotics, he was hopeful that they would send him home today. Unfortunately that did not happen. I have stayed the last two nights at the hospital with him, but I decided that I would come back to the hotel this evening and let Max be out of his crate. Poor puppy. :-( Jimmy is hopeful that he will be released tomorrow. The docs mentioned that they may have us stay in town until next week to make sure that things are getting better. Ugh, we were really hoping to come home this week. At least we won't have to drive in all the snow and probably ice...at least we hope that it is all gone before we have to make the drive back home.
Emotionally we are tired. I didn't realize how exhausting this would be. Jimmy says that he is doing well. I really think that he is fairing better than me, for which I am glad. Jimmy is having trouble laughing due to pain, which sucks, cause his whole persona is laughter. I really wish he could laugh and enjoy himself. I mean the poor man can't even watch sitcoms on TV because it is painful. That just seems wrong.
All in all, Jimmy is recovering well, aside from this little incision thing :-) Honestly, he has been lucky the infection has not made him sick, it just worried the crap out of me. He just wanted to wait and see if it got worse. Uh, I don't think so!! We had a few words about that. He has said before, "you shouldn't marry a nurse", but I think he's pretty glad he has me. Even though I sometimes make his life miserable.
There is not much more to add at this point. I hope that we will be home sometime next week. I will update again tomorrow and let you all know if Jimmy is released from the hospital. Thank you all for your continued support, thoughts and prayers. Until tomorrow.
Today they switched him from IV to oral antibiotics, he was hopeful that they would send him home today. Unfortunately that did not happen. I have stayed the last two nights at the hospital with him, but I decided that I would come back to the hotel this evening and let Max be out of his crate. Poor puppy. :-( Jimmy is hopeful that he will be released tomorrow. The docs mentioned that they may have us stay in town until next week to make sure that things are getting better. Ugh, we were really hoping to come home this week. At least we won't have to drive in all the snow and probably ice...at least we hope that it is all gone before we have to make the drive back home.
Emotionally we are tired. I didn't realize how exhausting this would be. Jimmy says that he is doing well. I really think that he is fairing better than me, for which I am glad. Jimmy is having trouble laughing due to pain, which sucks, cause his whole persona is laughter. I really wish he could laugh and enjoy himself. I mean the poor man can't even watch sitcoms on TV because it is painful. That just seems wrong.
All in all, Jimmy is recovering well, aside from this little incision thing :-) Honestly, he has been lucky the infection has not made him sick, it just worried the crap out of me. He just wanted to wait and see if it got worse. Uh, I don't think so!! We had a few words about that. He has said before, "you shouldn't marry a nurse", but I think he's pretty glad he has me. Even though I sometimes make his life miserable.
There is not much more to add at this point. I hope that we will be home sometime next week. I will update again tomorrow and let you all know if Jimmy is released from the hospital. Thank you all for your continued support, thoughts and prayers. Until tomorrow.
Friday, December 25, 2009
Post-op day 9: Christmas day
Merry Christmas everyone. There is not much more news to share with you, except that we are still in Houston and it is sunny with a high of 50 degrees this afternoon. I can't say that I am sorry that we have missed the snow! However, all you Oklahomans can enjoy it for us. Our Christmas morning has been filled with TV, eggs and sausage for breakfast, a little cleaning, phone calls and relaxing. All in all, not too bad.
Yesterday we went for a little drive down to Galveston. It wasn't bad at all. We weren't sure what we would do once we got there, but that was OK. It was nice to get out of the hotel. Once we arrived in Galveston we drove to the coast and saw the beautiful ocean! I LOVE the ocean, although I would like to see some other ocean view besides a Gulf of Mexico ocean view. The wind was blowing very hard yesterday and there were white caps on the water. We would have walked the beach, but we were ill equipped to handle the briskness of the wind, it was in the mid 40's but it felt much colder than that. After driving by the ocean and checking out what Moody Gardens was all about, we went to eat a restaurant, overlooking the ocean, called Fish Tales. The food was good and the conversation great. Since Jimmy is having difficulty walking long distances due to left leg pain, we didn't actually walk around Moody Gardens.
My apologies, the blog posted prematurely.
Plans for today included watching some NFL football, but unfortunately, we think it is on the NFL network and we don't have that channel here at our lovely hotel room. As a matter of fact, my TV aficionado husband is quite disappointed in the cable service at this hotel.Something we should have checked out before we checked in. :-) Jimmy wants to venture out the movies and watch Sherlock Holmes. Only after the laundry is done though... Ahhh, laundry on Christmas... what better present than clean clothes! Then later this afternoon we plan on going to Luby's for a nice, clean-up free, Christmas dinner.
We wish we were home for the holidays, but it really isn't so bad. We wish you all a very Merry Christmas!!
Yesterday we went for a little drive down to Galveston. It wasn't bad at all. We weren't sure what we would do once we got there, but that was OK. It was nice to get out of the hotel. Once we arrived in Galveston we drove to the coast and saw the beautiful ocean! I LOVE the ocean, although I would like to see some other ocean view besides a Gulf of Mexico ocean view. The wind was blowing very hard yesterday and there were white caps on the water. We would have walked the beach, but we were ill equipped to handle the briskness of the wind, it was in the mid 40's but it felt much colder than that. After driving by the ocean and checking out what Moody Gardens was all about, we went to eat a restaurant, overlooking the ocean, called Fish Tales. The food was good and the conversation great. Since Jimmy is having difficulty walking long distances due to left leg pain, we didn't actually walk around Moody Gardens.
My apologies, the blog posted prematurely.
Plans for today included watching some NFL football, but unfortunately, we think it is on the NFL network and we don't have that channel here at our lovely hotel room. As a matter of fact, my TV aficionado husband is quite disappointed in the cable service at this hotel.Something we should have checked out before we checked in. :-) Jimmy wants to venture out the movies and watch Sherlock Holmes. Only after the laundry is done though... Ahhh, laundry on Christmas... what better present than clean clothes! Then later this afternoon we plan on going to Luby's for a nice, clean-up free, Christmas dinner.
We wish we were home for the holidays, but it really isn't so bad. We wish you all a very Merry Christmas!!
Tuesday, December 22, 2009
Post-op day 6: 2:29pm
I should clarify. After I last updated there was a decision made that we needed to stay in town until Monday so that Jimmy could have the sutures removed. The surgeon didn't want to have anyone else remove them. SOOOO, we are here at least until Monday or Tuesday of next week.
Merry Christmas everyone!
Merry Christmas everyone!
Monday, December 21, 2009
Post-op day 5: 5:19pm
The CT scan results are in and a biopsy will be necessary. However, we are not going to have it done this trip. Much to our surprise the docs have decided to discharge Jimmy this evening. We are going to go back to the hotel tonight, perhaps, if he feels up to it, leave out tomorrow sometime to come back home.
WOW!!! What a whirlwind of events!
So, now what ,right? They want him to come back in mid to late January 2010 for additional work up to get placed on the transplant list. After that, the real discussion of risk vs. benefit of the different options will begin.
There are risks involved in regards to proceeding with the original plans. And there are questions of how much real time will that buy. The Fontan conversion is a palliative surgery, not a cure. I am sure that there will be much discussion before it is all said and done.
As for now, they want Jimmy to lose some weight, enjoy the holidays and get ready for next year!
And I thought the stressful times would be nearing an end with the end of this year.!! It appears that they are just beginning. I will continue to update the blog with information as it becomes available.
I know I keep saying it, but THANK YOU ALL for everything that you have given of yourselves. You each deserve a HUGE return on the emotional investment that you have given so selflessly to our family! May you all have a beautiful holiday season and a prosperous New Year. God Bless- Jimmy and Tammie
WOW!!! What a whirlwind of events!
So, now what ,right? They want him to come back in mid to late January 2010 for additional work up to get placed on the transplant list. After that, the real discussion of risk vs. benefit of the different options will begin.
There are risks involved in regards to proceeding with the original plans. And there are questions of how much real time will that buy. The Fontan conversion is a palliative surgery, not a cure. I am sure that there will be much discussion before it is all said and done.
As for now, they want Jimmy to lose some weight, enjoy the holidays and get ready for next year!
And I thought the stressful times would be nearing an end with the end of this year.!! It appears that they are just beginning. I will continue to update the blog with information as it becomes available.
I know I keep saying it, but THANK YOU ALL for everything that you have given of yourselves. You each deserve a HUGE return on the emotional investment that you have given so selflessly to our family! May you all have a beautiful holiday season and a prosperous New Year. God Bless- Jimmy and Tammie
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