I started this blog for me. The intention was to give myself a place to "talk" about Marfan Syndrome and maybe one day have this blog reach others living with Marfan as well. But I have not taken very good care of it, have I? The last post was from 4 days into B's most recent surgery recovery. That seems so long ago already.
How about a quick "catch up"?
Me: Today is March 5 and I feel like the next few months, though the calendar is busy, are going to be good ones. Not without challenges (more on those later!) but good times are ahead of us!
B: Amazing recovery from his aortic valve replacement surgery in November. The scar is looking better each day and we are getting used to the sound of the mechanical valve. He is back at work full time; he actually started working again after 10 weeks at home.
G: She is about the have a birthday - I cannot believe she is 6 years old. No changes medically for her since the last appointment in Baltimore.
And so, I give this blog a fresh start. Starting tomorrow morning. We shall simply pick up there.
Showing posts with label Surgery. Show all posts
Showing posts with label Surgery. Show all posts
Friday, March 5, 2010
Monday, November 9, 2009
Day 4
Surgery recovery is hard. The incision hurts. Nurses poke with needles at all hours of night. Sleep is non-existent. Machines beep. And you have to drag an IV pole everywhere with you for days at a time.
What no one tells you is how boring it can be too. You can only watch bad daytime tv for so long. Magazines get so unexciting. Yes, even the crappy gossip mags arent entertaining anymore.
Today we spent time napping and reading and did some Christmas shopping research online for Grace.
And tomorrow, we will probably do the same thing.
We are both really looking forward to going home to our own bed, our own tv selections, and most of all, our little girl.
What no one tells you is how boring it can be too. You can only watch bad daytime tv for so long. Magazines get so unexciting. Yes, even the crappy gossip mags arent entertaining anymore.
Today we spent time napping and reading and did some Christmas shopping research online for Grace.
And tomorrow, we will probably do the same thing.
We are both really looking forward to going home to our own bed, our own tv selections, and most of all, our little girl.
Sunday, November 8, 2009
New Ticker
5 1/2 hours of waiting. Three update calls from the OR nurse. Two magazines read cover to cover and back again. Two trips to the coffee cart for more caffeine.
And one really happy wife when the surgeon came out and said that the surgery went well and the patient was great!!!
On Thursday, B had aortic root replacement. We had hoped going into the OR that the aortic valve could be saved - the valve-sparing procedure was just what we really wanted to do and it seemed that B was a good candidate for it with this surgeon. Once in the OR, the aortic valve was damaged - a few tears and holes in the flaps indicated that it would have to be replaced within 10 years so the surgeon decided to replace it now. A good decision as we would prefer to avoid this in the future but honestly, we were a bit disappointed. With the mechanical valve, B will need to take blood thinner for the rest of his life. You can hear the valve clicking - it sounds like a faint tick of a clock. He says that he can feel it too. Over time, we wont hear it anymore cause we will be used to the sound. However, sitting in a meeting or in an elevator, people around B will hear it.
B is doing so great......22 hours after being wheeled into the OR, he was released from ICU and is now resting in the cardiac surgery unit. And it looks like we will be out of the hospital on Tuesday.
And one really happy wife when the surgeon came out and said that the surgery went well and the patient was great!!!
On Thursday, B had aortic root replacement. We had hoped going into the OR that the aortic valve could be saved - the valve-sparing procedure was just what we really wanted to do and it seemed that B was a good candidate for it with this surgeon. Once in the OR, the aortic valve was damaged - a few tears and holes in the flaps indicated that it would have to be replaced within 10 years so the surgeon decided to replace it now. A good decision as we would prefer to avoid this in the future but honestly, we were a bit disappointed. With the mechanical valve, B will need to take blood thinner for the rest of his life. You can hear the valve clicking - it sounds like a faint tick of a clock. He says that he can feel it too. Over time, we wont hear it anymore cause we will be used to the sound. However, sitting in a meeting or in an elevator, people around B will hear it.
B is doing so great......22 hours after being wheeled into the OR, he was released from ICU and is now resting in the cardiac surgery unit. And it looks like we will be out of the hospital on Tuesday.
Thursday, October 15, 2009
My New Nickname
Well, we have a surgery date but neither of us is really happy with it. We have made all the decisions and just want to get on with the show. Get in there, fix the problem, and move on with our life. How many people do you know who wish for a surgery date sooner!!!???
It has only been a week or so since the consultation with the surgeon. Since then, B has been to the dentist per the surgeon's request, flu shot appointments have been made for the entire family this weekend, and we have figured out vacation pay from both our jobs to cover our time out of the office. I have my family on hold so that they can take care of G while I take care of B in the hospital for a week. And I have updated the medical history and doctor contact information in B's Marfan Binder.
All that in a week and we are still 6 1/2 weeks away from the surgery date. My list of to dos as we get closer to the date gets longer and longer.
But that is what the Marfan Manager Mom does.
It has only been a week or so since the consultation with the surgeon. Since then, B has been to the dentist per the surgeon's request, flu shot appointments have been made for the entire family this weekend, and we have figured out vacation pay from both our jobs to cover our time out of the office. I have my family on hold so that they can take care of G while I take care of B in the hospital for a week. And I have updated the medical history and doctor contact information in B's Marfan Binder.
All that in a week and we are still 6 1/2 weeks away from the surgery date. My list of to dos as we get closer to the date gets longer and longer.
But that is what the Marfan Manager Mom does.
Wednesday, October 7, 2009
Being Prepared
Preparation is key to living our lives with Marfan Syndrome. Sure, there are so many things you cant plan for but having the right doctors, asking the right questions, gathering the information to manage the syndrome makes life a little easier for us.
We have known for years that Hubby would have to have Aortic Root surgery - its one of the unfortunate realities of having Marfan Syndrome. We just weren't ready to hear that it was time. Yesterday, we met the surgeon. We heard about the procedure and about valves. We talked about all the "what ifs". And we made decisions.
Now we wait for the call from the scheduler with the surgery date.
A month ago, when we found out that the surgery needed to be done now (not in 2 years like we thought), I was not prepared. The last few weeks, I have been sad, angry, frustarated, stressed, and depressed. And Hubby has too. Its not a fun way to exist. Through all the research we did on our own, all the statistics we learned and all the forum messages we read from past patients, we walked into that appointment yesterday knowing what was happening.
And that made it better. And it will make the next few weeks of surgery prep better. Because being prepared makes the process just a little easier on us.
We have known for years that Hubby would have to have Aortic Root surgery - its one of the unfortunate realities of having Marfan Syndrome. We just weren't ready to hear that it was time. Yesterday, we met the surgeon. We heard about the procedure and about valves. We talked about all the "what ifs". And we made decisions.
Now we wait for the call from the scheduler with the surgery date.
A month ago, when we found out that the surgery needed to be done now (not in 2 years like we thought), I was not prepared. The last few weeks, I have been sad, angry, frustarated, stressed, and depressed. And Hubby has too. Its not a fun way to exist. Through all the research we did on our own, all the statistics we learned and all the forum messages we read from past patients, we walked into that appointment yesterday knowing what was happening.
And that made it better. And it will make the next few weeks of surgery prep better. Because being prepared makes the process just a little easier on us.
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