7 yr old daughter's surgery

[DanielCohen]

After all the research, after all the doc visits, after all the reading, after all the interviews...it comes downs to may 20th. i have to watch my beautiful little girl go into a room without me and trust the people, and God, that she will live thru this pulmonary valve replacement. I know Dr. Spray at CHOP is one the best, but i'm still so worried. Worried about her pain. Worried about complications. Worried about not worrying about the right things. How will i face my 3 sons if something horrible happens? Is there someone on this sight who's child has gone thru a PVR surgery? How did it go? What should i be preparing for? So many people were so helpful when I was researching type of valves, i'm hoping a few can ease my concerns. God Bless....Daniel

 

[hall]

I am so sorry your daughter has to go through this. I know there are parents of children who have had surgery. Prayers for your daughter and family.

 

[ALCapshaw2]

Daniel,

We have a few "Heart Mom's" here on VR.com with LOTS of experience seeing their kids through OHS. From what I can tell, the kids 'bounce back' better than the adults.

Probably our most experienced "Heart Mom" is GIJanet.
You can see her profile and then find posts and threads written by her by going to the Members List on the Blue Line at the top of the page, click on it, then click on G, and scroll down until you find her listing. Click on her name and you will be taken to her member profile and links that will lead you to her posts.

Also see "Emma" (I hope that is her screen name) and LynW? and BriansMom (male teenager).

Some of their stories will make you think your daughter is just going for a tonsilectomy by comparison. These are EXPERIENCED Mom's!

Best wishes for a completely successful surgery and recovery for your beloved daughter.

'AL Capshaw'

 

[Lynlw]

Hi, I'm glad I checked one last time. My 21 (as of Easter) YO son Justin actually had a PVR and conduit replacement at CHOP by Spray. He's had quite a few surgeries at Started at CHOP with Dr. Norwood for his first 2 then went to dupont when he was 10 for a conduit revision done by Norwood (he didn't have a pulm valve until he was 17, he just had the conduit from his right ventricle /PA) then when Justin was 17 Norwood wasn't practicing anymore We talked to a few Surgeons/centers and ended up choosing Spray because Justin was pretty comlex and we knew going into the surgery his heart was fused to his sternum and there is a reason CHOP /spray is ALWAYS ranked either 1 or 2 (with Boston) for CHD surgery. He ended up needing a section of his conduit replaced 2 years later because of scarring and we went to Spray again.
Last time we were there inpatient was 2 years ago and it is really nice since they redid everything the CCICU and stepdown are pretty much brand new. It is great for kids about your daughter age, very bright and cheerfull, playstation in all the rooms (I think) a couch for a parent to sleep on right by the bed. and I really like centers that have CICUs for just heart patients and not general ICUs.
My nephew is about 2 now and he also had surgery at CHOP when he was about a month old. but he didn't have Spray, but they liked CHOP alot too.
FWIW CHOP has great stats and PVRs are one of the "best" surgeries to need IF your child needs surgery.
I'm sorry but I won't be able to answer any questions for a few days, My Mom died Monday and we are going out of town in a few hours for the funeral ect and they don't have internet. BUT we will be back Monday at the latest. (We also had to put down outr 14 yo Golden Retriever Comet today it is NOT a good week)
Justin's page is in my link
Lyn

 

[westie]

words

words

.
daniel

this is one of those times when one word is too many and a thousand words are too few.

i just pray everything goes ok for your little girl

westie

 

[lcwhitney]

My prayer for you and your daughter is that by the time she is an adult her surgery will be a very distant memory.
Lettitia

 

[lbecker]

Daniel, I will be praying for your daughter. Our children are the most important thing
we have and having to make the best decision for them is so hard. I don't know
what it would be like to have to experience what you are but so glad there are those
who know exactly what you are going though. Laura

 

[RI Mom]

Hey Daniel,

Just now looking at your post from Sept. but know exactly how you feel. My son had his first repair at 10 mos. then needed mitral and pulmonary valve replacement at age 4. The surgery went well but it is totally different dealing with a child at this age than it was having an infant. He needed a lot of emotional support!! Take tons of DVD's, comfort items, distractions of all kinds and please request the Child Life experts to be present for blood draws, tube removals, etc..... These are the things that made my child lose his mind completely!! He would have an out of body experience each time a nurse came in the room with a syringe or even to remove ECG leads. Be prepared!! Let her do as much as she can (taking off bandaids, leads, etc....). The Child Life folks are great at helping kids through these things and they will work with your other children who will be feeling the stress too...although they may not talk about it.

Best wishes for the 20th and if you need more suggestions on surgery with a school-aged child, let me know. If is all too fresh in my mind.

 

[Mary]

Daniel,
My very best wishes are with you as your daughter awaits replacement. I've put the surgery on our calendar, and many prayers and good thoughts will be offered that day for a successful surgery and easy recovery.

 

[Karlynn]

I've said a million times here (it seems) that I'm glad it was me that went through the surgery and not my children. I know you'd go through it all for her if you could. Because of all who have gone before your daughter, her prognosis is so bright. 50 years ago it would have been a much more sad process for all of you. Now it is a process full of success and hope and new life. I know she is going to do just fine. You all have my prayers.

 

[laurad37]

unfortunately I am not the mother of a heart child but my mother is.... I had my PV repaired at 2 days old and again at 6 years old... We talk alot about how things were back then (I am now 37). I led a very normal life as a child and my repair lasted over 30 years.

I know how it feels though to be helpless and not be able to help or be there for your child. My husband and I had a baby that only weighed 1 pound 11oz. We weren't even allowed to touch her. The first time we could hold her she was 2 months old. That's all we could do was talk to her through a plastic closed isolet. We had to put our faith in the doctors and nurses and God... the rest was beyond our control. I will pray for your family and I know that things will be ok and before you know it she will be running around with her friends. Good luck to you and keep us posted.

 

[WayneGM]

Sorry to hear your daughter has to go through all this. Best wishes and good luck to you and your daughter.

 

[dot4toto]

Sending positive thoughts and prayers to your daughter,your family and you...

 

[jax]

so sorry your daughter has to go through surgery. as a parent i know you feel helpless but remember what it would be like if you didn't have it done. Kids are very resilient and after this is said and done your daughter will handle this probably better than you did. But as one of the other posts said the worst part is when they have to draw blood and things like that where your child is a wake. Children's hospital's are wonderful with the kids and they have excellent people there just to help the kids through their experiences. so make sure to take advantage of everything they offer. it will definitely help your daughter. I am not a heart mom but my son was diagnosed with leukemia when he was 3 and we had to spend hours in the hospital and except for the procedures it is harder on the parent i think than it is the children because as a parent you feel helpless and you want it to be you instead of them. It is still going to be very difficult for her and my prayers go out to her. And all the best to you as you are going to need as much support as she is. Having a sick child has got to be one of the worst things that a parent has to go through and once she gets through this and is acting like a normal kid you are going to look at her and be amazed at how well she goes through it all. I still look at my son and can't believe how well he has handled everything. he's been done chemo for 6 years now and it just amazes me how very good he does.

 

[CA Pigg]

I am praying for your daughters surgery and for you and your family....

 

[MissMelis]

Hi Daniel,

I am the same as Laura - not a 'surgery mom' but my mother is.
For what it's worth - I don't remember anything about my surgery at age 6 except for riding around in the wheelchair (thrill of a lifetime for me!) and being angry at the nurse for giving me what I thought was water when it was actually some gross-tasting liquid (which I now know was part of the anesthetic). That tricky nurse!

Lots of moms and dads on here who have gone through the same thing, I'm sure they will have lots of advice to offer.
It sounds like you are in really good hands, and everyone here is praying for you and your little girl! Just remember - it's to make all your lives better.

Take care
Melissa

 

[laurad37]

Hi Daniel,

I am the same as Laura - not a 'surgery mom' but my mother is.
For what it's worth - I don't remember anything about my surgery at age 6 except for riding around in the wheelchair (thrill of a lifetime for me!) and being angry at the nurse for giving me what I thought was water when it was actually some gross-tasting liquid (which I now know was part of the anesthetic). That tricky nurse!

the only thing I remember from the surgery at 6 was my roomate and the bandage on my chest... That's it...

 

[kfay]

Daniel, I also am not a parent of a child with a congenital heart condition, but am the patient. I had many procedures done during my childhood and was hospitalized almost 100 times before I had my first surgery at 17. You know, kids are very resilent and bounce back quickly. I don't really remember anything "horrid" as a child being in the hospital that often. I thought I lived my life like any other child. I think this will be much harder on you, as her parent, then it will be on her. She will come out of this just fine.

Kim

 

[bugchucker]

Hey Daniel. I teared up reading your post. I too am not a parent of child going through this. Just remembering how hard my surgury was on my wife and son. As a parent we are supposed to protect them and now you are faced with having to trust others as you said. So sorry you and your daughter have to go through this. Youth will be on her side. She'll be in my prayers.

Phil

 

[njean]

I just wanted to tell you that my prayers & thoughts are with you & your daughter. Like others have said, youth is on her side & I'm sure she will do just fine.

Hang in there, trust in God & put your faith in the doctors that will be giving your child a 2nd chance at a better & healthier life.

Godspeed!