Reply to Anyone here with experience with open heart surgery at Children's?

Forum Index » Kids With Special Needs and Disabilities

Reply to "Anyone here with experience with open heart surgery at Children's?"

Subject:

Emoticons





More smilies

Text Color: Font: Close Marks

[quote=Anonymous][quote=Anonymous]I'll try to write more later to your e-mail address, but wanted to reassure you that your son will be in the best possible hands.  Our DD had a repair surgery with Dr. Jonas when she was 1 week old; we were home 6 days later and had excellent care in the CICU and amazing follow-up care after we were home and had to bring her back for check-ups. We now only get checked 1x/year (Dr. Doroshow is our regular cardiologist) and all is well, 4 years later.

The CICU nurses are top-notch and you generally get one nurse/each 12-hour shift so you do get to know them. You will also have access to a social worker; we had Heather Langlois and she's amazing. She would check in on us each day, see if we needed anything (like checking to make sure we had family help or someone helping with meals at home, time off from work to be there, or help coordinating insurance with employers, etc.), and was just a great person to talk to as we passed the time.

My best advice would be to line up someone to be with you during the actual surgery. It's hard to pass those hours alone. My parents were there as was one of the clergy from our church and we sat, told stories, prayed, sat quietly and were just together, which helped pass the time and also be quietly supportive as my husband and I awaited news of the surgery. You get a pager and they text you several times during the surgery to let you know how things are going in a general way. We found it very comforting.

You should ask as many questions before and after as will make you feel comfortable. You'll have a specific consult with the operating surgeon a day or two before which is a good time to ask a lot of questions. The docs were uniformly great (including Dr. Jonas) in drawing diagrams of what was going on, explaining what would unfold during the surgery, etc. The nurses gave us a very accurate picture of what the post-surgery wounds would look like, how we would be able to hold and care for our child while she still had various lines & oxygen, etc., and how the recovery period would progress.  As I said, we were home 6 days later, so recovery was rapid, as our little ones do heal much more quickly than we would.

My DH and I took turns at the hospital which gave pretty full coverage for our DD, but meant we didn't spend as much time together as probably would have been good for us, in terms of mutual support.

OK, that was more than I had intended to write here, but it's an experience that makes a huge impression on your life, so there's lots to share. I'll try to write more to you later this week.[/quote]

Thank you so much for all this. It is really helpful. I would love for you to email me if you have the time. Thanks again for all the encouragement! I am so glad your DD is doing so well.  [/quote]

Options

	Disable HTML in this message
	Disable BB Code in this message
	Disable smilies in this message

Review message

Search Recent Topics Hottest Topics