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.
Thursday, December 17, 2009
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.
Subscribe to:
Comments (Atom)