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Polly's first surgery is Thursday (Read 5620 times)
Gillian
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Polly's first surgery is Thursday
Dec 14th, 2009 at 7:15pm
 
Hi all...two months ago almost to the day our daughter Polly had a stroke.  She was diagnosed with Moyamoya the next day. 

Polly has her first indirect bypass this Thursday, Dec. 17th at Children's Memorial Hospital here in Chicago.  We live ten minutes from the hospital.

OK, so what should I expect?

Polly is three and she also has Down syndrome.  Developmentally she is doing really well but I'm still not sure how to prepare her for this and what to expect after the surgery.  Any advice is appreciated.

And thank God!  So far, Polly has been stroke and TIA free during our wait.
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mg12061
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Re: Polly's first surgery is Thursday
Reply #1 - Dec 15th, 2009 at 10:15am
 
Many many prayers for your family this week, prayers for a successful surgery and quick and uncomplicated recovery. I'm so glad to hear that Polly hasn't had any more strokes or TIA's. I would suggest bringing things wiht you that will comfort and keep Polly occupied. We brought movies, coloring material, favorite books, music,a colorful comfy blanket from home, and family pictures(she loves going through picture albums of familiar people and talking aobut them). You may remember my daughter has Down syndrome also. She was only 5 at the time of surgery so there wasn't much preparing we could do. We just talked about things as they occured, and talked a lot about "when we get home". You can prepare yourself for some swelling after surgery some children swell more than others. I would suggest keeping ahead of any pain she might have because it's easier to stay ahead of it than to wait until she's really uincomfortable. Kathleen didn't have much pain after the first couple of days. Be sure she staying very well hydrated in the days before. I was able to stay with Kathleen right up until the time she was put under so we didn't have a seperation time.( some hospitals have different rules). They also updated us hourly as to how things were going in the OR, this gave us a few minutes to breath, then we'de start waiting for the next update. I was able to stay with her at all times which made it easier for both of us.  REvocery is different for each child but it seems like most bouce back rather quickly after srugery. Do you have any specific questions?
Mary Grace
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yunnanababy
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Re: Polly's first surgery is Thursday
Reply #2 - Dec 15th, 2009 at 4:11pm
 
Hi Gillian,

I will be thinking of Polly on Thursday and praying for her & your family.  My daughter's experience was very similar to what Mary Grace posted.  I was able to stay with Ruby in pre-op until the Versed kicked in so no separation anxiety issues for her.  We also received hourly udpates from the OR nurse liason once surgery was underway - those were a great "lifeline" for me, so to speak.  I think MG's advice about staying ahead of the pain post-surgery is also spot on.  We tried to pull Ruby off the morphine too quickly, IMO, after the 2nd surgery, so if I had it to do over again, would have made different choices for her regarding the pain meds.  She was also very nauseous after both surgeries - Zofran didn't alleviate the nausea for her either so we changed sheets/gowns often, especially the first nights after her surgeries.   

My daughter is 6.5 y/o and had her 2 indirect bypass surgeries in October.  She had prior strokes/TIA that her doctors had missed, but none that left her with noticeable deficits.  However, she was in constant pain from terrible headaches, so I approached preparing her for the surgeries from the perspective of "the surgeries will hopefully help you stop having headaches".  That was really the key for her accepting what needed to happen.

My daughter didn't have much swelling post-surgery either time - more on the left side than the right - and very little bruising/discoloration.  I had prepared myself for rather large bald patches, but her surgeon shaved very little hair both times, so I was really pleased that we weren't dealing with the lack of hair/self-esteem issues I thought we might be as she returned to school. 

Ruby bounced back very quickly after the first surgery (went home Day 3 post-surgery) but took a few extra days after the 2nd surgery  to seem more like her old self (home on Day 6, I think-seemed a lot longer though).  After the first surgery, she was talking to me the same day, eating fairly normally and up to use the bathroom the next day.  After the 2nd surgery, she didn't really speak coherently until Day 3 post-surgery, nor did she get out of bed or eat normally until then either.  I think this was just the way her body responded to having two major surgeries in the span of 10 days. 

I was also able to stay with my daughter the entire time as she recovered in hospital.  We took lots of crafts, crayons, etc. to the hospital, which kept her occupied after the first surgery, not so much after the 2nd b/c she really didn't feel up to doing much until the day we went home.  We did watch lots of videos from the hospital's video "library".  Child life services also checked in from time to time and they were very good about trying to get her interested in playing/doing things other than watching TV - she just wasn't interested.  She really missed her sister, who was not allowed to visit after the 2nd surgery due to the visitor restrictions in place due to H1N1.

Every child's experience is different, but I hope it helps to hear some details of how things went for another child going thru similar circumstances.  I think you will be amazed at how well Polly will come thru this.  I know that's how I felt watching my kiddo recover - simply amazing!  Smiley

Best regards,

Jennifer



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Gillian
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Re: Polly's first surgery is Thursday
Reply #3 - Dec 15th, 2009 at 9:37pm
 
Thank you both for your thoughtful, detailed responses.  It helps so much to hear from you.

I will plan to bring some things to do in the hospital.  My daughters, Polly's sisters are sad that they can't visit her in the hospital either b/c of H1N1.

Let me know if you can think of anything else that would be useful to know...I'm nervous.  I'll try to think of more questions too.
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Cherry (LuckyMe)
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Re: Polly's first surgery is Thursday
Reply #4 - Dec 16th, 2009 at 10:33am
 
I'll pray for little Polly. I live in Chicago area too.
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mg12061
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Re: Polly's first surgery is Thursday
Reply #5 - Dec 17th, 2009 at 11:59am
 
Your family is in my prayers today.
Mary and Kathleen
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yunnanababy
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Re: Polly's first surgery is Thursday
Reply #6 - Dec 17th, 2009 at 12:41pm
 
Gillian,

Polly, you & your family are all in our prayers today too.  I am looking forward to hearing an update from you as you have the chance.  Until then, know that many of us are thinking of you all today.

Jennifer
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
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Gillian
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Re: Polly's first surgery is Thursday
Reply #7 - Dec 17th, 2009 at 9:54pm
 
Thanks for your prayers and for checking in.

Polly made it through the surgery well.  The whole process lasted three hours.  Tonight she is in ICU (I was there all day and my husband is staying with her overnight).  She's in a lot of pain and is receiving meds for that.  They also are giving her a blood transfusion b/c she lossed a bit too much after the surgery.

So far so good.

She was awake and watching Caillou earlier this evening and showing everyone our family Chrismtas picture...she wanted everyone to see her sissies.
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mg12061
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Re: Polly's first surgery is Thursday
Reply #8 - Dec 17th, 2009 at 10:52pm
 
I came here hoping to hear good news about Polly. It sounds like things are going smoothly. We'll keep her in our prayers for a quick and uncomplicated recovery.Thanks for the update.
Mary Grace
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yunnanababy
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Re: Polly's first surgery is Thursday
Reply #9 - Dec 18th, 2009 at 1:11pm
 
So glad to read the positive news about Polly!  Thanks for letting us know how things went yesterday, and please keep us updated as you're able regarding her recovery progress.

Jenn
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
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mg12061
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Re: Polly's first surgery is Thursday
Reply #10 - Dec 20th, 2009 at 7:26am
 
Praying that Polly's recovery is still going well.
Mary Grace
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Gillian
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Re: Polly's first surgery is Thursday
Reply #11 - Dec 20th, 2009 at 1:04pm
 
Thanks so much for keeping up with us.  Polly is home today!  She was in the ICU for two days (2nd day b/c there wasn't another bed available).  Then yesterday she was transferred to a regular recovery room and was off of everything but IV for fluids.  Last night they took the IV out she slept great and we came home this morning.

She is sitting in the kitchen eating goldfish and asking for Pizza.  She doesn't seem to be in any pain at all right now but I'm keeping a close watch on her and making her drink a lot.

Now we need to heal up and get ready for surgery number two.
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yunnanababy
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Re: Polly's first surgery is Thursday
Reply #12 - Dec 21st, 2009 at 1:23pm
 
Fantastic!  Enjoy your time at home and you both will continue to be in our prayers in the days ahead.

Jenn
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli
WWW 1422039771&ref=profile  
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