View Full Version : Tufts NEMC for an ICD 8/23
08-13-2007, 11:25 AM
After several more conferences and a family meeting, we have decided to go ahead with Emily's ICD sooner rather than later. Dr. Mark Link will do the procedure Thursday, 8/23/07. Thanks to Lisa, Donna, and other HCMA members for your supportive advice. We'll keep you posted.
08-13-2007, 01:10 PM
I am sure she will do well - it will be a hard few days then you will all adjust to life with an ICD... and the peace of mind it brings.
Best to all,
08-13-2007, 03:15 PM
I'll be thinking of her next week.
08-13-2007, 07:29 PM
My best wishes to you all - Linda
08-14-2007, 08:40 AM
I know it is a tough thing to face for your child and it is new territory but it is the safest and best decision . Best of luck. Will be thinking of you all and especially Emily.
08-14-2007, 11:17 AM
Thanks everyone. If anyone has any words of wisdom of what to bring to the hospital we'd be glad to hear. We are fortunately not very experienced at hospital stays. As Emily is pediatric, one of us will be allowed to stay with her overnight.
08-14-2007, 01:11 PM
I am a big kid at heart so I took my teddy bear with me and my IPOD. My IPOD got me through the many hours of a much longer stay that Emily will have...but even for an overnight stay your favorite music can sometime scare away the jitters. Since one of you will be with her she should be okay.
As a parent I know that the decision may have been difficult but it will give you peace of mind. I have had my ICD for a little over two years and no problems at all.
I'll be thinking of you next week.
08-14-2007, 06:20 PM
My best wishes for Emily and her family. She will be in excellent hands at NEMC. Dr. Link is my electro doctor and I think the world of him. She will be just fine :)
08-15-2007, 08:10 PM
I can't believe its going to be done so soon, its just great for you all and especially Emily. In a few weeks you will have your life back.
Elisha and I will be thinking of you all . . . and sending you warm wishes for a speedy recovery . . . maybe you and Emily will come to Ireland when she's all fit again.
Lots of love & hugs
Laura & Elisha
08-16-2007, 06:47 AM
Thanks. It is soon. Once the decision was made, we decided to do it soon. I was surprised how fast it could be scheduled. Emily, in particular wanted it as soon as possible, because this will give her almost 2 weeks before school starts.
I hope Elisha is doing ok this week and you get some answers in your upcoming consultations.
08-17-2007, 06:48 PM
You're in the best of hands imaginable at NEMC. As for what to bring, as a veteran, I find the iPod, a handheld video game and lots of reading material. I keep it simple, wearing either scrubs or those t-shirt/ sleep pants combo.
A stuffed animal is essential for a child andmost adults like 'em, too.(Myself included)
I remember that the in-house TV had Disney channel.
You all will be in our thoughts and prayers next week.;)
08-20-2007, 12:41 AM
My son James got his ICD at TUFTS by Dr. Link in April of 05. I love Dr. Link. We are going back to Boston on September 6 for follow-up for James. They were really good there with him during his ICD implant and myectomy. Dr. Maron is just amazing as well as everyone on staff.
James was pretty sore. I went to the pediatric side and they let me get James a laptop to use in the room. He enjoyed that. They also have tons of movies over there as well.
James is now 14 and I am so thankful for his AICD. It gives us both a piece of mind.
We will be thinking about you. Janet
08-23-2007, 07:56 PM
Emily had her ICD implanted this morning at Tufts NEMC by Dr. Link. The surgery went well. She is resting now in her room with her mom, and her brother and I are back at the hotel. If everything is ok we'll be going home tomorrow. She is in some pain, and just took some tylenol plus codeine. Dr. Maron stopped by and said she's doing well. An extra bonus was that they were able to coordinate a muscle biopsy with a pathologist while they were into her muscles, so she will avoid another surgery for that. I'll post later. Thanks everybody for your support.
08-24-2007, 12:43 PM
Great news!! She will be sore for a few days then back to her ole self in no time!
08-24-2007, 03:42 PM
Thanks for the update! Like Lisa said it won't take long until she is back in form.
All the best.
08-24-2007, 06:49 PM
Glad it went well and now lots of TLC and Emily will be back to her life and protected.
08-24-2007, 07:20 PM
I'm glad she's doing well. Give her our best.
08-26-2007, 08:20 PM
Well done to you all,
Its a huge trauma for Emily . . . We are sending you all our love and warm hugs and kisses for a real speedy recovery.
Please let us know how she is doing.
08-27-2007, 05:19 PM
Emily is doing pretty well. She's had some minor issues with the recovery. The surgery site is doing fine, and she is moving around and using her left arm fairly well already (4 days). We have struggled a little with finding a balance with the pain meds, but that is working out. Her throat is very sore from the intubation.
NEMC was a great place to be. Dr. Link and his team did an excellent job. The nursing staff in Cardiology were wonderful with Emily. Emily was a trooper, and continues to be in good spirits as she recovers. We are working on perfecting smoothie recipes, and whoever suggested a lot of pillows for the ride home is a genius.
Thanks for all your support and good wishes.
08-27-2007, 06:01 PM
Emily herself here!!
Thanks everybody for your kindness and love.
I love NEMC. It's the perfect place to be. I mean its like tthe set of some movie because everything's so perfect.
Dr. Maron could be a good actor rigt? He has a too-good-to-be-true staff with a fantastic facility right?
MUST BE A MOVIE!!!
Anyways I would swear it was if I didn't actually have an ICD.
No actor would actually cut me up as it would be to risky even for reality TV.
I owe it to the actors/doctors.
THOSE GUYS ROCK MY SOCKS OFF!!! GO DOCTOR MaRON, LINK, AND ALL OTHER NEMC "DUDES" lol
I'm becoming so teenagery
08-28-2007, 12:37 PM
Glad to see you online, Em!
08-28-2007, 12:53 PM
Emily: My son James loved Dr. Maron also. He was too cool! I am so glad you are doing good. We loved the hospital and all the staff. Dr. Link was awesome too. James site healed up great and he has done so well. He is 14 now. We are going back to Boston next week for James' yearly check up.
I hope you continue to do great! Janet
08-29-2007, 02:07 PM
Good luck to James next week. Tell Dr. Maron we said hi!
08-30-2007, 12:06 PM
You sound like you are doing so well! I was 28 (3 years ago) when I had mine put in and was a complete baby. I spent the night at my mom's and made her stay home from work for 3 days after. I give myself a break by realizing that it was my first overnight stay in a hospital and my first surgery. So, if you do start getting anxious in the upcoming days and weeks, know that you are not alone and you will feel less anxious as time goes on. I forget about mine most of the time now until my 90 lbs. Lab decides to lay on my chest!
Best of luck to you!
08-31-2007, 12:02 PM
So glad to hear all is going well .. Keep up that great, positive spirit and outlook That you possess.
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