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.
Monday, December 28, 2009
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
Post-op day 5: 2:24pm
Wouldn't you know that I missed speaking with the doctors this morning...But, we do know that there will be no more surgeries this visit. Today Jimmy went for his CT scan, they did a full body CT with contrast to make sure that all other body systems look OK. I am not sure when we will know those results.
The options as they were presented this morning are:
1. Come back in a few months and try to complete the Fontan conversion surgery.
2. Have a transplant.
3. Treat medically.
Jimmy remains in the ICU for now. I am not sure how much longer they plan on keeping him here. The insurance company didn't want to authorize a facility change if the CT and possible liver biopsy could be completed here. As I mentioned above, he had the CT scan already, they have opted not to do the liver biopsy at this time and will revisit that idea should the CT scan suggest it be done.
It is our impression that we will be able to return home sooner than we thought, but that is still unclear. Jimmy's parents are headed back to Ada later this evening. Jake and the puppy Max are going with them.
As always we appreciate your love, support, and prayers.
The options as they were presented this morning are:
1. Come back in a few months and try to complete the Fontan conversion surgery.
2. Have a transplant.
3. Treat medically.
Jimmy remains in the ICU for now. I am not sure how much longer they plan on keeping him here. The insurance company didn't want to authorize a facility change if the CT and possible liver biopsy could be completed here. As I mentioned above, he had the CT scan already, they have opted not to do the liver biopsy at this time and will revisit that idea should the CT scan suggest it be done.
It is our impression that we will be able to return home sooner than we thought, but that is still unclear. Jimmy's parents are headed back to Ada later this evening. Jake and the puppy Max are going with them.
As always we appreciate your love, support, and prayers.
Post-op day 5: 6:53am
Well, it's day 5 post-op and the original plan was to get out of the ICU 2 says ago. He was to move out to a step down unit yesterday, but, it was Sunday.
The ICU doc was in this morning and used the ole line, "what have you been told?" so that he didn't reveal more information than he was supposed to. :-) The plan today is the same as it was yesterday...Move to St. Luke's and complete additional testing...that is if the insurance company says that it is OK.
I stayed the night with Jimmy last night and he had an OK night. Of course, he wishes that he could have slept longer. This will all get better with time. So at this hour, we are still pretty clueless regarding a plan. I know that there are several of you that want the info as much as we do. I will post more when I know more....
The ICU doc was in this morning and used the ole line, "what have you been told?" so that he didn't reveal more information than he was supposed to. :-) The plan today is the same as it was yesterday...Move to St. Luke's and complete additional testing...that is if the insurance company says that it is OK.
I stayed the night with Jimmy last night and he had an OK night. Of course, he wishes that he could have slept longer. This will all get better with time. So at this hour, we are still pretty clueless regarding a plan. I know that there are several of you that want the info as much as we do. I will post more when I know more....
Sunday, December 20, 2009
Post-op day 4: 7:54pm
Good evening all. The news at this hour is that we remain at Texas Children's in the ICU...could not move to St. Luke's because the insurance company is unavailable on Sundays. Good news for Jimmy I suppose, he gets to be doted on by these children nurses one more day.
Jake and I spent most of the day at the Children's Museum. His favorite part was putting together the molecules. He made water, ethanol, carbon dioxide, methane and sugar. He said that the sugar molecule was the most difficult by far. He didn't even want to attempt the caffeine molecule. Maybe next time. He also played chase with a lighted floor. We made things that would fly and he built a car out of Lego's and sent it sailing down a track. It was pretty great. He really enjoyed himself but wished that his dad could have been there with him.
Jimmy was pretty active today, he walked the unit a couple of time, sat up in the chair for the majority of the day and visited with his parents while we were at the museum. He said he was feeling a little grumpy this evening and attributes it to a lack of sleep. He said he didn't sleep well last night at all. Tonight should be better, he's got some good drugs ordered for pain, there's no chest x-ray at 4 am and he didn't have a water pill just before laying down. I hear him snoring as I sit here and type. He needs some good rest. I hope he gets it. Tomorrow is a potentially difficult day. As it looks at this point, it will really probably be Tuesday before we get our questions answered.... Like I mentioned before, Jimmy is still hopeful that the surgeon will opt to finish the surgery. That makes me nervous. But then again, it all makes me nervous. I don't want him to give up. I am trying my best to help him remain positive. He mentioned quality vs. quantity of life this evening. That tells me his mind is a working, but he hasn't been very verbal. He has made it clear to me in the past that he places a high value on quality of life. That, I am sure, will play a factor in what decisions are made.
I know you all are continuing to pray for Jimmy. We appreciate all you have given of yourselves. My mom has always said that God will not give you more than you can handle. It seems that is always the truth. Until tomorrow....
Jake and I spent most of the day at the Children's Museum. His favorite part was putting together the molecules. He made water, ethanol, carbon dioxide, methane and sugar. He said that the sugar molecule was the most difficult by far. He didn't even want to attempt the caffeine molecule. Maybe next time. He also played chase with a lighted floor. We made things that would fly and he built a car out of Lego's and sent it sailing down a track. It was pretty great. He really enjoyed himself but wished that his dad could have been there with him.
Jimmy was pretty active today, he walked the unit a couple of time, sat up in the chair for the majority of the day and visited with his parents while we were at the museum. He said he was feeling a little grumpy this evening and attributes it to a lack of sleep. He said he didn't sleep well last night at all. Tonight should be better, he's got some good drugs ordered for pain, there's no chest x-ray at 4 am and he didn't have a water pill just before laying down. I hear him snoring as I sit here and type. He needs some good rest. I hope he gets it. Tomorrow is a potentially difficult day. As it looks at this point, it will really probably be Tuesday before we get our questions answered.... Like I mentioned before, Jimmy is still hopeful that the surgeon will opt to finish the surgery. That makes me nervous. But then again, it all makes me nervous. I don't want him to give up. I am trying my best to help him remain positive. He mentioned quality vs. quantity of life this evening. That tells me his mind is a working, but he hasn't been very verbal. He has made it clear to me in the past that he places a high value on quality of life. That, I am sure, will play a factor in what decisions are made.
I know you all are continuing to pray for Jimmy. We appreciate all you have given of yourselves. My mom has always said that God will not give you more than you can handle. It seems that is always the truth. Until tomorrow....
Post-op day 4: 10:49
Ahh, Sunday in the medical complex. Quiet is a good word to describe it.
Jimmy is well. The chest tube was removed this morning. The plan is to get him moved over to St. Luke's this afternoon to the step down unit and run additional tests on Monday (liver evaluation). Unfortunately we have no additional information on the next real plan of action. I think it will depend on the liver tests.
The PA for the surgeon was in just a minute ago and from her demeanor it seems that Dr. Fraser is apprehensive about attempting to complete the surgery. No one is coming out and saying that, but that is the impression that I get with the way that they dance around the issue. Unfortunately, Jimmy is hoping for him to finish what he started. I am not sure that is a realistic goal. But, I am not forcing him to accept anything he is not ready to accept.
Jake and I went to Target this morning and got a few groceries. It was nice to get out and about. Jimmy wants me to take Jake to do something fun, so the plan is to go to the Children's Museum just up the street. It is open from noon to 6 this evening. It will be good to go do something. I brought the camera so we can take pictures to share with Jimmy when we return.
I will write more later. Happy Sunday.
Jimmy is well. The chest tube was removed this morning. The plan is to get him moved over to St. Luke's this afternoon to the step down unit and run additional tests on Monday (liver evaluation). Unfortunately we have no additional information on the next real plan of action. I think it will depend on the liver tests.
The PA for the surgeon was in just a minute ago and from her demeanor it seems that Dr. Fraser is apprehensive about attempting to complete the surgery. No one is coming out and saying that, but that is the impression that I get with the way that they dance around the issue. Unfortunately, Jimmy is hoping for him to finish what he started. I am not sure that is a realistic goal. But, I am not forcing him to accept anything he is not ready to accept.
Jake and I went to Target this morning and got a few groceries. It was nice to get out and about. Jimmy wants me to take Jake to do something fun, so the plan is to go to the Children's Museum just up the street. It is open from noon to 6 this evening. It will be good to go do something. I brought the camera so we can take pictures to share with Jimmy when we return.
I will write more later. Happy Sunday.
Saturday, December 19, 2009
Post-op day 3; 9:10am
So we saw the surgeon briefly this morning. He did say that they still don't have a definitive plan of action there are a lot of people working together in order to make the best options available to Jimmy. We wish we knew more, but we appreciate the thought and consideration that is going into his care. He did say that preliminary blood tests for transplant are favorable.
Holy cannolis, I accidentally deleted everything that I had written! UGH!!!!
So, lets see what was I saying... Although, Jimmy is not a fan of the transplant option, it could go either way for me. I just want him to be with me as long as I can get him. Pretty selfish, huh? But, I do want to honor his wishes and I will support him in whatever direction he feels the most comfortable taking.
There has been talk about moving him over to St. Luke's and out of Texas Children's, but we have not been told when or why this might occur. The only thing that makes since is that is where they would do a transplant, should it come to that. Our surgeon has privliges at both hospitals, so it's possible that they could complete the fontan conversion over there as well, if that is the way that we decide to go...So at this point, we are just waiting to have a conference with the congenital heart docs, the surgeon(s) and the transplant peeps.
The immediate plan is to get Jimmy up and moving today. He ate dinner last night and tolerated it well. This morning was french toast, eggs, bacon, OJ and milk...YUMMY! Last night he told me he felt weak, this morning he says he's stronger, so continuing in that directions is obviously what we wish to do. He still has a chest tube which is draining a fair amount of serosanguanous fluid, plan is to leave it one more day. He continues to get Lasix to help him get rid of excess fluid. He still has the morphine pain pump. All his vital signs are stable. He is recovering well from the events of Wednesday.
Again, thank you for your support and love. We are both thrilled and deeply touched to have such generous and gracious people in our lives. Stay tuned for further updates.
Holy cannolis, I accidentally deleted everything that I had written! UGH!!!!
So, lets see what was I saying... Although, Jimmy is not a fan of the transplant option, it could go either way for me. I just want him to be with me as long as I can get him. Pretty selfish, huh? But, I do want to honor his wishes and I will support him in whatever direction he feels the most comfortable taking.
There has been talk about moving him over to St. Luke's and out of Texas Children's, but we have not been told when or why this might occur. The only thing that makes since is that is where they would do a transplant, should it come to that. Our surgeon has privliges at both hospitals, so it's possible that they could complete the fontan conversion over there as well, if that is the way that we decide to go...So at this point, we are just waiting to have a conference with the congenital heart docs, the surgeon(s) and the transplant peeps.
The immediate plan is to get Jimmy up and moving today. He ate dinner last night and tolerated it well. This morning was french toast, eggs, bacon, OJ and milk...YUMMY! Last night he told me he felt weak, this morning he says he's stronger, so continuing in that directions is obviously what we wish to do. He still has a chest tube which is draining a fair amount of serosanguanous fluid, plan is to leave it one more day. He continues to get Lasix to help him get rid of excess fluid. He still has the morphine pain pump. All his vital signs are stable. He is recovering well from the events of Wednesday.
Again, thank you for your support and love. We are both thrilled and deeply touched to have such generous and gracious people in our lives. Stay tuned for further updates.
Friday, December 18, 2009
Post-op day 2: 11:30pm
Ok, so I don't know any more than I did a few hours ago when I last posted, however, I felt compelled to write.
I have decided to stay here at the hospital tonight since Jimmy is awake and alert. He understands that they were not able to complete the surgery they way it was planned. He is sad. Many of you know, he thought this would be the surgery to end all surgeries, or at least that is what we hoped for... I know that if they decide that the best option for him is to have a transplant, he will be less than thrilled. I understand that transplants come with additional "baggage" and it is quite difficult to get him to comply with current medical regimine, which is minimal to say the least. But part of me feels that it would be a much simpler solution. We have a lot to discuss, a lot to think about and we haven't even met with the docs yet. It is going to be a very difficult time ahead.
I feel guilty writing about myself when I feel like the reason for this blog is to keep people informed about Jimmy, but I feel like I need an outlet. I have so many thoughts and feelings that are trapped inside that I am going to explode if I can't get them out. So, I understand if you do not read any further...
I feel like I have to be strong. I am tired. Wednesday, I didn't want to have to be strong anymore, but my rock, my best friend, the love of my life wasn't able to talk to me and tell me it would all be ok. So what choice did I have. Even when I was alone I couldn't breakdown and just let it all out. I have to find an outlet before it becomes too much and I crumble. But what do I do? The one person that I can tell anything too is sick. He's looking to me for guidance. What if I am not strong enough to be his rock? How do I fix that? I am sooo used to having it mostly together. You know in nursing school, they talk about patients feeling out of control and vulnerable. I can honestly say that I know exactly what that means and it sucks. No one can help you or make you feel like it is all gonna be ok. Unless I feel like I am in control of the situation, I build a wall that even my parent's and my child cannot penetrate. This is all quite unsettling. Why can't I be all the things I expect myself to be?! Then I think, silly me. Suck it up and deal with these problems with your big girl panties on! For heaven's sake tammie, you are a grown woman, an adult! YOu have to be able to handle this stuff. Even as I write this out, I think it's stupid and I should just quit my whining and shut up. But I am not going to back space and erase it all. I need to put it out there. Whether anyone reads it or not, it will feel better having put it down in words. So as I try to resist the delete button calling my name I say, once again, thank you!!!!!!! I do feel loved and I do feel like people genuinely care for me and my family. I just wish there was more that I could do to show my gratitude.
Well, it's getting late and post-op day 2 is about to turn into post-opday 3... Until then thank you from the depths of my soul! You all will never know how undeserving and blessed I feel for the generosity and kindness that has been showered upon me. May you reap what you have sewn and may I have the wisdom and open heart to pay forward the grand gestures of kindness that you all have shown to me. Much love and appreciation....Tammie
I have decided to stay here at the hospital tonight since Jimmy is awake and alert. He understands that they were not able to complete the surgery they way it was planned. He is sad. Many of you know, he thought this would be the surgery to end all surgeries, or at least that is what we hoped for... I know that if they decide that the best option for him is to have a transplant, he will be less than thrilled. I understand that transplants come with additional "baggage" and it is quite difficult to get him to comply with current medical regimine, which is minimal to say the least. But part of me feels that it would be a much simpler solution. We have a lot to discuss, a lot to think about and we haven't even met with the docs yet. It is going to be a very difficult time ahead.
I feel guilty writing about myself when I feel like the reason for this blog is to keep people informed about Jimmy, but I feel like I need an outlet. I have so many thoughts and feelings that are trapped inside that I am going to explode if I can't get them out. So, I understand if you do not read any further...
I feel like I have to be strong. I am tired. Wednesday, I didn't want to have to be strong anymore, but my rock, my best friend, the love of my life wasn't able to talk to me and tell me it would all be ok. So what choice did I have. Even when I was alone I couldn't breakdown and just let it all out. I have to find an outlet before it becomes too much and I crumble. But what do I do? The one person that I can tell anything too is sick. He's looking to me for guidance. What if I am not strong enough to be his rock? How do I fix that? I am sooo used to having it mostly together. You know in nursing school, they talk about patients feeling out of control and vulnerable. I can honestly say that I know exactly what that means and it sucks. No one can help you or make you feel like it is all gonna be ok. Unless I feel like I am in control of the situation, I build a wall that even my parent's and my child cannot penetrate. This is all quite unsettling. Why can't I be all the things I expect myself to be?! Then I think, silly me. Suck it up and deal with these problems with your big girl panties on! For heaven's sake tammie, you are a grown woman, an adult! YOu have to be able to handle this stuff. Even as I write this out, I think it's stupid and I should just quit my whining and shut up. But I am not going to back space and erase it all. I need to put it out there. Whether anyone reads it or not, it will feel better having put it down in words. So as I try to resist the delete button calling my name I say, once again, thank you!!!!!!! I do feel loved and I do feel like people genuinely care for me and my family. I just wish there was more that I could do to show my gratitude.
Well, it's getting late and post-op day 2 is about to turn into post-opday 3... Until then thank you from the depths of my soul! You all will never know how undeserving and blessed I feel for the generosity and kindness that has been showered upon me. May you reap what you have sewn and may I have the wisdom and open heart to pay forward the grand gestures of kindness that you all have shown to me. Much love and appreciation....Tammie
Post-op day 2: 5:18pm
Ok I have been neglecting the blog today and I am sorry. Jimmy has been more awake today and I have been spending all my spare time with him. I know you all understand and I appreciate all the thoughts and prayers.
SO, happenings of the day: He was extubated to bipap between 12:30 and 1:00pm. He's still been pretty groggy most of the day, perhaps a better description would be forgetful. I have explained what happened many times but inevitably a few hours later he asks me almost the same questions... You gotta love anesthesia! He has been denying pain all day which is WONDERFUL, but they went ahead and gave him a morphine PCA (pain pump). HIs big complaint today have been that he is thirsty. But I guess we ICU nurses are used to that. Been battling a little high blood pressure, but they are not too concerned about that. All in all he has been back to his jovial, ornery self. Even though he has been a little tearful at times in regards to what will happen next and what the options will be. Good thing, or maybe bad, thing is that he probably won't remember much of what I have told him and I will mostlikely have to tell it all to him again. Ugh. I really doesn't get any easier any time that I have told it. He's resting well, although he HATES the BiPAP.
I keep getting delayed in my posting so I will stop here for now. Thanks AICU gang for the BEAUTIFUL and TASTY edible boquet! You have given my family so much. Our deepest gratitude and thanks for your continued love and support!
SO, happenings of the day: He was extubated to bipap between 12:30 and 1:00pm. He's still been pretty groggy most of the day, perhaps a better description would be forgetful. I have explained what happened many times but inevitably a few hours later he asks me almost the same questions... You gotta love anesthesia! He has been denying pain all day which is WONDERFUL, but they went ahead and gave him a morphine PCA (pain pump). HIs big complaint today have been that he is thirsty. But I guess we ICU nurses are used to that. Been battling a little high blood pressure, but they are not too concerned about that. All in all he has been back to his jovial, ornery self. Even though he has been a little tearful at times in regards to what will happen next and what the options will be. Good thing, or maybe bad, thing is that he probably won't remember much of what I have told him and I will mostlikely have to tell it all to him again. Ugh. I really doesn't get any easier any time that I have told it. He's resting well, although he HATES the BiPAP.
I keep getting delayed in my posting so I will stop here for now. Thanks AICU gang for the BEAUTIFUL and TASTY edible boquet! You have given my family so much. Our deepest gratitude and thanks for your continued love and support!
Thursday, December 17, 2009
Post-op day 1: 8:36pm
Well, I feel comfortable enough to leave the hospital today. I have come back to the hotel room in hopes to get a good night's sleep and be ready for the big day tomorrow. By "Big Day" I mean, it is decision making day. Assuming that Jimmy gets extubated and is awake to discuss the issues with the doctors and of course me.
I did not get to speak with the docs this afternoon, but that is fine. Jimmy is down to 60% oxygen on the ventilator this evening. That's encouraging. Really there is not much more to add as far as change in condition. He seems to be resting very well and continues to deny pain.
I will let you all know what is happening in the morning. Thanks again for all the LOVE and KINDNESS that you ALL have shown us.
I did not get to speak with the docs this afternoon, but that is fine. Jimmy is down to 60% oxygen on the ventilator this evening. That's encouraging. Really there is not much more to add as far as change in condition. He seems to be resting very well and continues to deny pain.
I will let you all know what is happening in the morning. Thanks again for all the LOVE and KINDNESS that you ALL have shown us.
Number 14
Not that I am superstitious or anything, but I just thought I better make another post and not leave it at 13. I know I 'm being silly, but the hospital doesn't even have a 13th floor, nor does the one I work in.... Just warding off as much bad juju as possible, right?
Post-op day1: 1:53pm
Things are pretty much the same with Jimmy. He remains on the vent, not much weaning going on at this time. Oh well. I wish I could have a conversation with him. He still has a fever. Tylenol is not helping much at all. Preliminary reports show gram negative bacilli and gram positive cocci in cluster from his sputum culture. He has been receiving vancomycin and with these prelim results they have added Cipro. He remains on an insulin drip for elevated blood sugar.
I have spoken with several physicians this morning. They assure me that he will recover from the current situation. However, once he is recovered, the question becomes: what is the next step? So all the docs are putting their heads together to formulate all possibilities for future treatment. By no means is this over. As we have been told before, there is a possibility/probability of transplantation. SO, instead of waiting until they need information emergently, they are going to go ahead and work him up for transplant to determine if he would even be a candidate. There are SOOOOO many physician minds collaborating that it is unbelievable. We have the heart docs from St. Luke's, transplant team, congenital heart specialists, and I am sure the list goes on. I was told this morning that they plan on talking to me this afternoon to present all possible options.
As some of you may recall from the hospitalization in July 2008, they thought Jimmy had a bad gallbladder and they also told him that he had a cirrhotic liver and wanted to do a biopsy. Then the good cardiologist came in and said that is not necessary because this is all related to his heart. So, that was that. No one ever mentioned the liver again....until this morning. It is not uncommon for patients with failing Fontan's to also have bad livers due to venous congestion. And apparently, they have found, over the years, that when the failing Fontan patient needs a heart transplant, they may also need a liver as well. SO, in order to evaluate liver disease they will have to do a trans venous CT guided biopsy.
As you might be able to tell from the tone of my writing this afternoon, I feel better. I am a little worried that he remains intubated with a fever and high O2 requirements, but the docs assure me that this will all be OK...I think maybe they HAVE to say that. I am used to more reality based promises of uncertainty.... The nursing staff is wonderful. I hope that they will say the same about me, even though I am sure that I have been a pain in the butt, I really am trying to be good. All my nursing friends will appreciate that I am sure. Again, thank you all for being great, supportive, human beings! I feel overwhelmingly blessed to have such an extensive support system.
I have spoken with several physicians this morning. They assure me that he will recover from the current situation. However, once he is recovered, the question becomes: what is the next step? So all the docs are putting their heads together to formulate all possibilities for future treatment. By no means is this over. As we have been told before, there is a possibility/probability of transplantation. SO, instead of waiting until they need information emergently, they are going to go ahead and work him up for transplant to determine if he would even be a candidate. There are SOOOOO many physician minds collaborating that it is unbelievable. We have the heart docs from St. Luke's, transplant team, congenital heart specialists, and I am sure the list goes on. I was told this morning that they plan on talking to me this afternoon to present all possible options.
As some of you may recall from the hospitalization in July 2008, they thought Jimmy had a bad gallbladder and they also told him that he had a cirrhotic liver and wanted to do a biopsy. Then the good cardiologist came in and said that is not necessary because this is all related to his heart. So, that was that. No one ever mentioned the liver again....until this morning. It is not uncommon for patients with failing Fontan's to also have bad livers due to venous congestion. And apparently, they have found, over the years, that when the failing Fontan patient needs a heart transplant, they may also need a liver as well. SO, in order to evaluate liver disease they will have to do a trans venous CT guided biopsy.
As you might be able to tell from the tone of my writing this afternoon, I feel better. I am a little worried that he remains intubated with a fever and high O2 requirements, but the docs assure me that this will all be OK...I think maybe they HAVE to say that. I am used to more reality based promises of uncertainty.... The nursing staff is wonderful. I hope that they will say the same about me, even though I am sure that I have been a pain in the butt, I really am trying to be good. All my nursing friends will appreciate that I am sure. Again, thank you all for being great, supportive, human beings! I feel overwhelmingly blessed to have such an extensive support system.
Post-op day 1: 9:13am
Jimmy is still in the ICU. He remains on the ventilator at this time. He is running a fever this morning, they are culturing all fluids to make sure there are no bacteria growing. He does open his eyes and answer yes and no questions as well as follow commands. He squeezed the crap out of my hand when I asked him to last night.
The mood is somber. Or at least mine is. Jake has been absolutely amazing. Yesterday he told me and Jimmy's mom to put our tears in a suitcase and save them for another day. He is worried, but he uses humor to deal with the stress. I am so proud of him. My parents are here at the hospital right now. Jimmy's parents and Jake are getting around at the hotel and getting ready to head this direction.
I feel emotionally weak and I am finding it difficult to talk without bursting into tears. I don't enjoy being emotionally vulnerable. Oh what I wouldn't give to feel comfortably numb. Isn't that part of a song? Anyway...
I am not sure how often I will be updating from here on out. I am sure that if there are any changes I will be sure to post them . I will be updating everyone at least once or twice a day; that is my goal anyway. Thank you all again for the well wishes and prayers.
The mood is somber. Or at least mine is. Jake has been absolutely amazing. Yesterday he told me and Jimmy's mom to put our tears in a suitcase and save them for another day. He is worried, but he uses humor to deal with the stress. I am so proud of him. My parents are here at the hospital right now. Jimmy's parents and Jake are getting around at the hotel and getting ready to head this direction.
I feel emotionally weak and I am finding it difficult to talk without bursting into tears. I don't enjoy being emotionally vulnerable. Oh what I wouldn't give to feel comfortably numb. Isn't that part of a song? Anyway...
I am not sure how often I will be updating from here on out. I am sure that if there are any changes I will be sure to post them . I will be updating everyone at least once or twice a day; that is my goal anyway. Thank you all again for the well wishes and prayers.
Wednesday, December 16, 2009
Day of surgery: 4:38pm
Ok so here's the update at this hour.
Jimmy is stable. They have elected to stop the surgery. The original fontan has gotten so large that it has actually fused with the sternum. That is why they had the trouble with nicking and causing bleeding. Jimmy has received 8 units of blood and 4 units of plasma. They had no emergent way in which to place him on the bypass maching due to the scarring of his femoral arteries. Had they not stopped, he would not have made it through the surgery. I am very disappointed.
The options now are that we let him recover for a few days, then try again -OR- they can try to manage him medically until he is no longer managable then place him on the transplant list, if he would even be accepted to the transplant list-OR-part of the problem is that he is extremely overweight for his frame size. So they have said that perhaps he should be put on a very strict weightloss program over the next year and try again.
The surgeon wants Jimmy to participate in this decision making process. So the goal is to wake him up, get him off the ventilator, and ask him what he wants to do.
This is absolutely the hardest, most difficult situation I have or ever want to be in.
I wish I had better news for you all. That's all for now. Thank you all for your well wishes.
Jimmy is stable. They have elected to stop the surgery. The original fontan has gotten so large that it has actually fused with the sternum. That is why they had the trouble with nicking and causing bleeding. Jimmy has received 8 units of blood and 4 units of plasma. They had no emergent way in which to place him on the bypass maching due to the scarring of his femoral arteries. Had they not stopped, he would not have made it through the surgery. I am very disappointed.
The options now are that we let him recover for a few days, then try again -OR- they can try to manage him medically until he is no longer managable then place him on the transplant list, if he would even be accepted to the transplant list-OR-part of the problem is that he is extremely overweight for his frame size. So they have said that perhaps he should be put on a very strict weightloss program over the next year and try again.
The surgeon wants Jimmy to participate in this decision making process. So the goal is to wake him up, get him off the ventilator, and ask him what he wants to do.
This is absolutely the hardest, most difficult situation I have or ever want to be in.
I wish I had better news for you all. That's all for now. Thank you all for your well wishes.
Day of Surgery: 2:40pm
Ok, so new developments... The PA reports that they continue to work on the scar tissue. In the mean time they have had additional bleeding, "a lot" she said, they have had to give more blood. But blood gases, brain sats, blood levels and vital signs are currently stable. They have had to cardiovert a "few times". She assures me that the scar tissue battle was anticipated. My mind is racing with thoughts of "what if".
That's all I have to add for now. I think I better go find something to eat.
That's all I have to add for now. I think I better go find something to eat.
Day of surgery: 1:43pm
So, the PA just came out again. As it stands now, they were unable to use the femoral artery for the bypass machine because they are too small. So now they are back at the chest working to free the sternum from the scartissue beneath. You understand correctly if you are thinking..."they don't even have his chest open yet?!" The PA said they expect it will take at least 2 more hours to get through the scar tissue. She states that his vitals continue to be normal last BP was 120's systolic. HE is doing ok, it's the scar tissue that is causing the delay. They said he is continuing to bleed, "a slow trickle" is how she put it. They are giving him blood and using a cell saver (a device that collects his blood to reinfuse). So they feel like it is gonna be an additional 8 hrs from now before they are finished. That's right, 9:00pm tonight. Again, that "family anesthesia" idea I had earlier sounds pretty good right now.
We plan on having anothe update around 2:30pm. In the mean time, Jimmy's parents have taken off, not sure where to, they are stressed and having a difficult time sitting still. My parents have just left to go find something to eat down the street, Jake has decided to tag along. I think he finds it hard to sit as well. And obviously, here I sit writing. Maybe I will venture down to subway and grab a salad.
We plan on having anothe update around 2:30pm. In the mean time, Jimmy's parents have taken off, not sure where to, they are stressed and having a difficult time sitting still. My parents have just left to go find something to eat down the street, Jake has decided to tag along. I think he finds it hard to sit as well. And obviously, here I sit writing. Maybe I will venture down to subway and grab a salad.
Day of Surgery: 11:59am
The PA just came to update us. She assures us that everything is going just fine. However, as they were dissecting away the scar tissure they nicked the original fontan circuit vessel and thus there has been a lot of bleeding. Blood pressure and sats remain good and he has received a lot of fluid due to the bleeding. Due to this little snafu ( I think that is how to spell it...), they have had to abandon the scar tissue dissection to try and get him placed on the bypass machine via femoral artery.... Sounds easy, right? Hopefully. See last March when we were here for his heart cath they were unable to access either the left or right femoral arteries. They found out that they were both occluded as a result of multiple caths throughout his lifetime.
The plan from here is to get him placed on the bypass machine via femoral artery and return to dissecting away the scar tissue so that they can get to the repair part of the surgery. As you might imagine, this delays things a bit. I told them to take all the time that they need. I'm in no hurry. Of course, that was mostly a lie... but she did assure me that there is no panic stricken doctors at this moment. I hope that is the truth. :-)
I did ask the question: "What if you are unable to access the femoral artery?" and the response was, "We'll just try the other one." Ok. Then what? What if? But then again, I can "what if" my self crazy!
Jimmy's mom said," You know if he (Jimmy) knew what was going on right now he would be giving them heck." That is true. I can hear him now..."What do you mean you nicked the large vessel? I thought you all had done this before! You gotta be kidding me....explicatve, explicative, explicative!!" At least the thought of what he'll say makes me smile.
The nerves are a jumpin' though. I did relax enough to take a little rest. Mom has gone to Mass to pray. Dad and Jake are out roaming around the hospital because it is hard to sit still. Jimmy's parent's are looking out the window watching the cranes building a new addition to the hospital across the street. The tension of silence and worry surround us all. We have a long, long day ahead of us. If only they could give us all anesthesia to get through this, wouldn't that be great! "Hey now, wake up it's all over and everything went fine." Of course, that would add a lot to the final bill I am sure of it.... and I am sure that insurance would have something negative to say about paying for all of that comfort. Alas, I digress. We plan to know more in a couple of hours. Til then...
The plan from here is to get him placed on the bypass machine via femoral artery and return to dissecting away the scar tissue so that they can get to the repair part of the surgery. As you might imagine, this delays things a bit. I told them to take all the time that they need. I'm in no hurry. Of course, that was mostly a lie... but she did assure me that there is no panic stricken doctors at this moment. I hope that is the truth. :-)
I did ask the question: "What if you are unable to access the femoral artery?" and the response was, "We'll just try the other one." Ok. Then what? What if? But then again, I can "what if" my self crazy!
Jimmy's mom said," You know if he (Jimmy) knew what was going on right now he would be giving them heck." That is true. I can hear him now..."What do you mean you nicked the large vessel? I thought you all had done this before! You gotta be kidding me....explicatve, explicative, explicative!!" At least the thought of what he'll say makes me smile.
The nerves are a jumpin' though. I did relax enough to take a little rest. Mom has gone to Mass to pray. Dad and Jake are out roaming around the hospital because it is hard to sit still. Jimmy's parent's are looking out the window watching the cranes building a new addition to the hospital across the street. The tension of silence and worry surround us all. We have a long, long day ahead of us. If only they could give us all anesthesia to get through this, wouldn't that be great! "Hey now, wake up it's all over and everything went fine." Of course, that would add a lot to the final bill I am sure of it.... and I am sure that insurance would have something negative to say about paying for all of that comfort. Alas, I digress. We plan to know more in a couple of hours. Til then...
Day of surgery: 10:05am
Dr. Fraser just spoke with me. He wanted to answer any questions I might have before they get started on the actual surgery. I didn't have any questions. He states that they will be in surgery all day. Ugh, am I ready for this? I guess I have to be. Let the nerves begin! I will update as I am updated.
What is this surgery anyway?
Since I know not everyone reading this has heard my explanation of what they are going to be doing in this surgery, I figured that I would do my best to write a description.
Normal blood flow through the heart:
Vena cava, Right atria, tricuspid valve, right ventricle, pulmonary artery, lungs, pulmonary vein, left atria, mitral valve, left ventricle, aorta to the body and then back to the vena cava.
Jimmy's circulation at birth:
Vena cava,right atria, left atria, mitral valve, left ventricle,right ventricle, then both the pulmonary artery and the aorta exited the right atria. soooo, that means that blood went out to the body and the lungs from the same chamber. This made him what is termed, a "blue baby" cause he wasn't oxygenating all the blood that was sent out to the body.
As an infant he had multiple surgeries to create shunts and route the blood to the lungs before going out to the body. Then at age 7 he had a corrective surgery, called a "Fontan" to "fix" the circulation.
Over time all the patients that had a Fontan end up requiring heart transplants due to the dilation of the right atria that is made to be the only pumping chamber on the right side of the heart as well as failure of the created connections. That was until about 15 years ago. Now I am not sure when they actually started performing this corrective surgery the new way, but due to the "new" way of correcting the circulatory pathway the patients do not have the same complications and failure of the created circulatory pathway. In other words, the outcome are better and fewer longterm complications occur.
So what's the "new" way of fixing this problem? Basically, they connect the vena cava directly to the pulmonary artery bypassing the right side of the heart all together. Then the blood flows to the lungs back to the left atria, throught the mitral valve, into the left ventricle, and out the aorta to the body and back to the vena cava.
So now to the nitty gritty of what they are doing today. First they have to undo what was done when Jimmy was 7. Then they will create the connection from the vena cava to the pulmonary artery with a synthetic material called gortex. Because one of the longterm complications that develop from the "old" way of doing this surgery is atrial arrythmias (or fast heart beat), they are also going to do a "maze procedure". This is a procedure where they "burn out" the natural electrical pathways that trigger the heart to beat. Because they are "burning out" the trigger they have to create an artificial trigger; this is done by placing a pacemaker. It is also possible that they may have to "debulk" the right atria. Since the right atria has become gigantic over the years from all the pressure that it has had to endure by being the pumping chamber to the lungs, they may have to cut part of it away (debulk).
So, that's it in a nutshell...sounds prety straight foreward right? I hope this helps you all to understand this a little better and answer any questions that you might have.
Normal blood flow through the heart:
Vena cava, Right atria, tricuspid valve, right ventricle, pulmonary artery, lungs, pulmonary vein, left atria, mitral valve, left ventricle, aorta to the body and then back to the vena cava.
Jimmy's circulation at birth:
Vena cava,right atria, left atria, mitral valve, left ventricle,right ventricle, then both the pulmonary artery and the aorta exited the right atria. soooo, that means that blood went out to the body and the lungs from the same chamber. This made him what is termed, a "blue baby" cause he wasn't oxygenating all the blood that was sent out to the body.
As an infant he had multiple surgeries to create shunts and route the blood to the lungs before going out to the body. Then at age 7 he had a corrective surgery, called a "Fontan" to "fix" the circulation.
Over time all the patients that had a Fontan end up requiring heart transplants due to the dilation of the right atria that is made to be the only pumping chamber on the right side of the heart as well as failure of the created connections. That was until about 15 years ago. Now I am not sure when they actually started performing this corrective surgery the new way, but due to the "new" way of correcting the circulatory pathway the patients do not have the same complications and failure of the created circulatory pathway. In other words, the outcome are better and fewer longterm complications occur.
So what's the "new" way of fixing this problem? Basically, they connect the vena cava directly to the pulmonary artery bypassing the right side of the heart all together. Then the blood flows to the lungs back to the left atria, throught the mitral valve, into the left ventricle, and out the aorta to the body and back to the vena cava.
So now to the nitty gritty of what they are doing today. First they have to undo what was done when Jimmy was 7. Then they will create the connection from the vena cava to the pulmonary artery with a synthetic material called gortex. Because one of the longterm complications that develop from the "old" way of doing this surgery is atrial arrythmias (or fast heart beat), they are also going to do a "maze procedure". This is a procedure where they "burn out" the natural electrical pathways that trigger the heart to beat. Because they are "burning out" the trigger they have to create an artificial trigger; this is done by placing a pacemaker. It is also possible that they may have to "debulk" the right atria. Since the right atria has become gigantic over the years from all the pressure that it has had to endure by being the pumping chamber to the lungs, they may have to cut part of it away (debulk).
So, that's it in a nutshell...sounds prety straight foreward right? I hope this helps you all to understand this a little better and answer any questions that you might have.
Day of Surgery: 9:23am
Well, Jimmy went off to surgery about an hour and a half ago. Jimmy was joking with the nurses and docs this morning.
The PA just came out to update us. All the lines are in and Jimmy is doing well. Next update should be around 10:30-11:00. They anticipate that they will be working on dissecting away the scar tissue at the next update.
The PA just came out to update us. All the lines are in and Jimmy is doing well. Next update should be around 10:30-11:00. They anticipate that they will be working on dissecting away the scar tissue at the next update.
Day of surgery: 4:50am
Well, I am awake, dressed and ready (kind of), with coffee in hand for the day ahead. Jimmy is laying in bed watching TV, Jake is still asleep as is Max, the puppy. Let me just say that your thoughts and prayers are already helping, I am not as nervous at this point as I thought I would be. Jimmy, of course, is as cool as a cucumber.
We had a lovely dinner all together last night at Pappadeaux's Seafood Kitchen. Since we are near the coast we just HAD to have some fresh seafood. It was yummy!! Jimmy and I tried oysters on the half-shell for the first time. (I might add, only because my dad ordered 2 dozen!) They weren't bad at all. A little slimy, but otherwise tasteless, unless you pack on the sauces. Nothing like a little horseradish to clear the sinuses! Jimmy's parents and Jake just sat and watched us eat them. Mom even had a few. We laughed and Jimmy joked, much to my and his mother's dismay, that we should all sit on either side of him cause it's his last supper. If you can get past the blasphemy of it and if you know Jimmy at all, it was quite funny. Unsettling, but funny.
So, sit tight. I will be updating throughout the day.
We had a lovely dinner all together last night at Pappadeaux's Seafood Kitchen. Since we are near the coast we just HAD to have some fresh seafood. It was yummy!! Jimmy and I tried oysters on the half-shell for the first time. (I might add, only because my dad ordered 2 dozen!) They weren't bad at all. A little slimy, but otherwise tasteless, unless you pack on the sauces. Nothing like a little horseradish to clear the sinuses! Jimmy's parents and Jake just sat and watched us eat them. Mom even had a few. We laughed and Jimmy joked, much to my and his mother's dismay, that we should all sit on either side of him cause it's his last supper. If you can get past the blasphemy of it and if you know Jimmy at all, it was quite funny. Unsettling, but funny.
So, sit tight. I will be updating throughout the day.
Tuesday, December 15, 2009
Surgery Information
Ok folks, I have the information you have all been waiting for:
The pre-op appt lasted a little longer than we expected. We were there from 0800 to 1200. Lab work, x-ray, physical exam, tour of the surgery/ICU/waiting/general cardiology areas, and meeting the social worker, child life specialist as well as the anesthesia NP and surgery PA. Phew!!! That was a lot of stuff. Very organized! Kudos to them. Unfortunately, it means we will not make it to NASA before surgery. All my medical friends will appreciate this, Jimmy FINALLY did his advanced directive!! WOOHOO. That makes me feel A LOT better!!!! you all know what its like not to have one of these...makes things very messy should the "that" decision need to be made. ;-)
Of course Jimmy had everyone laughing. He's a regular comedian. :-) I think I even chuckled a bit. He can always make me laugh, even in the worst situation.
Surgery is at 0800 in the morning. Surgery should last about 8 hours. I will receive updates every hour or two during surgery. Hopefully, I will be able to relay the info I get in a timely manner. After surgery Jimmy will be in the ICU and have 1-on-1 nursing care for the first 24 hrs.
Jimmy's parents arrived around 10 am today. My parents are currently en route. The plan from here is to go out for a nice dinner tonight and get a good nights sleep. Of course, Jimmy cannot eat after midnight, clear liquids until 0500. We have to be at the hospital by 0700.
Personal Note:
I was really touched, as I always am when we have come to TCH, by all the pictures of babies, children and young adults that have been "saved" by the work these medical professionals provide. As a medical professional myself, I sometimes forget just how much we touch the lives of our patients. The daily routines that we develop in order to function like well oiled machinery sometimes cause us, or at least me, to take for granted the emotional and physical angst that the families and the patients must endure throughout any medical situation or illness. I have always said that I want to help people. I want to leave my mark on the world as someone who has touched lives and provided support to people in times of need. Some people wish for fame and fortune, but my dream is a simple one. You could say, it is sort of my personal mission: To make a difference, no matter how big or small. Sometimes, I forget my mission. It's nice to be reminded.
The pre-op appt lasted a little longer than we expected. We were there from 0800 to 1200. Lab work, x-ray, physical exam, tour of the surgery/ICU/waiting/general cardiology areas, and meeting the social worker, child life specialist as well as the anesthesia NP and surgery PA. Phew!!! That was a lot of stuff. Very organized! Kudos to them. Unfortunately, it means we will not make it to NASA before surgery. All my medical friends will appreciate this, Jimmy FINALLY did his advanced directive!! WOOHOO. That makes me feel A LOT better!!!! you all know what its like not to have one of these...makes things very messy should the "that" decision need to be made. ;-)
Of course Jimmy had everyone laughing. He's a regular comedian. :-) I think I even chuckled a bit. He can always make me laugh, even in the worst situation.
Surgery is at 0800 in the morning. Surgery should last about 8 hours. I will receive updates every hour or two during surgery. Hopefully, I will be able to relay the info I get in a timely manner. After surgery Jimmy will be in the ICU and have 1-on-1 nursing care for the first 24 hrs.
Jimmy's parents arrived around 10 am today. My parents are currently en route. The plan from here is to go out for a nice dinner tonight and get a good nights sleep. Of course, Jimmy cannot eat after midnight, clear liquids until 0500. We have to be at the hospital by 0700.
Personal Note:
I was really touched, as I always am when we have come to TCH, by all the pictures of babies, children and young adults that have been "saved" by the work these medical professionals provide. As a medical professional myself, I sometimes forget just how much we touch the lives of our patients. The daily routines that we develop in order to function like well oiled machinery sometimes cause us, or at least me, to take for granted the emotional and physical angst that the families and the patients must endure throughout any medical situation or illness. I have always said that I want to help people. I want to leave my mark on the world as someone who has touched lives and provided support to people in times of need. Some people wish for fame and fortune, but my dream is a simple one. You could say, it is sort of my personal mission: To make a difference, no matter how big or small. Sometimes, I forget my mission. It's nice to be reminded.
Monday, December 14, 2009
December 14, 2009
Well, another day is coming to a close in Houston. We went to the mall in Katy, TX today and ate at the Rainforest Cafe. If you have never been to one of these restaurants, I highly recommend it, especially if you have children. It is just a really neat place.
Today, I learned (Jimmy already knew this), that there is a free, yes, I said FREE shuttle to the hospital from our hotel each hour from 0600 to 2000 daily! Woo Hoo!!! So now, we don't have to walk a couple of blocks to catch the tram, instead, we just catch the shuttle from the office.
We have an early day tomorrow. Pre-op appt at 0800 at Texas Childrens. I'm sure that we will get information like when surgery starts and how long it is anticipated to last. I will be sure to update the blog with this information as soon as I have it and have access to the computer.
Jimmy wants to head to NASA again before he goes to surgery. I suppose that would be ok. Jake was asking about Kemah today, perhaps we will pack in one more day of fun, before we have to get all serious.
Jimmy and I talked this evening, he's not worried or scared or nervous. I guess that I am enough of all those things for the both of us. Until tomorrow...
Today, I learned (Jimmy already knew this), that there is a free, yes, I said FREE shuttle to the hospital from our hotel each hour from 0600 to 2000 daily! Woo Hoo!!! So now, we don't have to walk a couple of blocks to catch the tram, instead, we just catch the shuttle from the office.
We have an early day tomorrow. Pre-op appt at 0800 at Texas Childrens. I'm sure that we will get information like when surgery starts and how long it is anticipated to last. I will be sure to update the blog with this information as soon as I have it and have access to the computer.
Jimmy wants to head to NASA again before he goes to surgery. I suppose that would be ok. Jake was asking about Kemah today, perhaps we will pack in one more day of fun, before we have to get all serious.
Jimmy and I talked this evening, he's not worried or scared or nervous. I guess that I am enough of all those things for the both of us. Until tomorrow...
Sunday, December 13, 2009
December 13,2009
We have finally arrived in Houston for the much anticipated surgery date. We arrived late last night, around 1230 am. The drive wasn't too bad, just a little long. After a short nights rest we got up for a little fun before having to get down to business. We attended our first ever NFL game: Houston Texans vs. Seattle Seahawks. The Texan's won with an astonishing score of 34-7! The boys had such a good time that they are planning the next game... and wouldn't you know it, there's another home game before we return to Oklahoma... January 3rd... I am not sure the patient will feel up to attending, but it's certain that he would like to, we'll have to see how that turns out. One of the best things about going to the game today was being able to walk there and back. Our hotel is just across the street from Reliant Park, so, no parking fee, no traffic to fight, just lovely weather in which to take a stroll.
After the game we watched a little more football on TV then headed off to Wal-Mart to get some essentials, like food!! YUM!! With our bellies full, there was yet MORE football to watch... I just love work-free Sundays! And finally, the boys decided there has been enough football for one day... on to a little friendly videogame playing while I sit here at the computer and Max, the puppy, is sacked out on the bed.
Tomorrow we plan to find our way to the Medical Center via the tram, locate the place we're suppose to go to on Tuesday morning for pre-op, then maybe a little shopping followed by a relaxing evening of...probably more football back at the suite.
All-in-all, not a bad start to this adventure.
After the game we watched a little more football on TV then headed off to Wal-Mart to get some essentials, like food!! YUM!! With our bellies full, there was yet MORE football to watch... I just love work-free Sundays! And finally, the boys decided there has been enough football for one day... on to a little friendly videogame playing while I sit here at the computer and Max, the puppy, is sacked out on the bed.
Tomorrow we plan to find our way to the Medical Center via the tram, locate the place we're suppose to go to on Tuesday morning for pre-op, then maybe a little shopping followed by a relaxing evening of...probably more football back at the suite.
All-in-all, not a bad start to this adventure.
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