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  1. BarbJean

    Am I expecting too much? 7 weeks since surgery

    Hi all, it has been a bit over 7 weeks since Colin's surgery. I am getting a bit worried because he does not seem to want to do much. He has had a great recovery with no complications. But, he seems to be content to just stay in the house. I have pushed him to get resumes out for teaching...
  2. BarbJean

    How did you get yourselves out of bed? Literally.

    Hi all, Just told Colin I would ask my friends on the board for ideas of how to raise himself out of bed. In the hospital, it was easier as he would raise the head of the bed first. It seems like now, he needs me to put my hands behind his back and raise him. Ideas?
  3. BarbJean

    RRRRRRR- no BM, no discharge

    Hi all. Colin was going to be discharged today. But, here we sit in his room, waiting for a BM. He has had laxatives and still nothing. Any magic words I can say over him to get things going? Happen to some of you?
  4. BarbJean

    Colin Update

    Colin texted me at 5 am this morning to tell me had stood up and marched in place. I think he was pretty proud of it! Had a slight temp last nite and the chills, but bloodwork is good. They are giving him more electrolytes. Took him off the meds to get his pressure up and it is staying where it...
  5. BarbJean

    Colin is in ICU

    Hi to all my friends. Colin is now in ICU. The surgeon felt it went well: no blood needed, no abnormal rhythms, no pacemaker needed, valve was repaired, tissue was not too bad, a small hole in his heart was repaired. Went in to see him a couple of minutes ago but he is in lala land. He had...
  6. BarbJean

    Preop has gone well

    Hi all, we arrived in Baltimore last night. Right now we are in the lobby of Hopkins as Colin is having some labs done. Just love that they have wireless here. It is strange, but I actually feel less nervous being here in the hospital. We had a great PA who did alot of the intake and reassured...
  7. BarbJean

    Can't sleep wondering if we have made the right decision

    I can tell this is going to be a long night. What if we are wrong and should wait for Colin to have this surgery? I am reading a million Marfan posts and keep worrying we are having surgery done too soon. The geneticist and surgeon told us it was up to us to make the call. I have read that for...
  8. BarbJean

    19 Days to go-the questions begin

    Time is flying by and Colin's surgery quickly approaches. I know I will have many questions with each new day. Here are two I have right now: -When we drive home from Hopkins, about a 6 hour drive, should he sit in the back seat to avoid the risk of an airbag going off? If he lays down in the...
  9. BarbJean

    Brain Fog? Could it be beta blockers? Anxiety?

    Hi friends, I told my son I would post here and ask your opinions on this issue. I know there was a recent thread on heart related dizziness and lightheadedness, but this does not really seem to be the issue with him. For a long time, I would say about 4 years now, he has these periods where he...
  10. BarbJean

    Dental visits before surgery

    It seems like so many of you have mentioned going to the dentist before surgery. I asked the surgeon and he said Colin should just have his teeth checked to be sure there were no problems or infections. I really forgot to ask alot of details about that with so many other questions on my list...
  11. BarbJean

    Back from Hopkins - to operate or not to operate, that is the question

    Hi Friends, We got back from Johns Hopkins a little while ago. On Thursday, we saw Colin's geneticist in Philadelphia at UPenn Hospital. Colin had an MRA done there. Basically, he told us that Colin is right on the borderline as far as having the repair done. I asked him if I would be able to...
  12. BarbJean

    Insurance Issues- RRRRRRR

    Not sure if this is where I should post this question. I am sure most of you are better at navigating insurance issues than most people based on your experience. My son, Colin, will be needing surgery soon on his aortic root due to Marfan Syndrome. I called Empire to see how many opinions we...
  13. BarbJean

    Choosing a Surgeon

    Hi to all. I am new to this board, but I am so thankful I have found it. It has given me sooooo much info. Last week, my 24 year old son was told that it was time for aortic surgery. He was diagnosed at age 5 with Marfan Syndrome. For 20 years, I have waited for the day to come, but the initial...


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