Have the date!

[FauxClaud]

So, I went ahead and asked for the surgery to be scheduled.

It's set for Monday July 25th. We will have pre-testing, etc somewhere the week before.
After all the research and talking to everyone, I feel OK with the decision to go composite aorta/ mechanical. They are already setting us up with a home tester since Garin is young..so I feel OK with the coumidin aspect also.

It's scheduled for a monday..so that's a good thing. Grandma is off monday's for the two little ones at home..and then my husband is off tuesday and wednesday.
I need to start planning the rest of the time. I have the two kids to deal with, plus Garin in the hospital. I will just take myself off the work schedule until I see what things pan out to be here with recovery.

Any hints on things I need to know for time management? Do I want people to come down to the hospital with me to wait it out? I know I will be there, his dad ( ex hubbie, but on good terms) probably his grandmother...what the heck do you do while they cut open your child???

 

[Phyllis]

I put Garin's surgery on the calendar. Bring a book (maybe you will be able to concentrate), needlework or anything else to keep your hands busy. It helps to have someone with you while you wait. Since you have a good relationship with Garin's father, that may do or you may want a good friend or family member along. Those will be the longest 4-5 hours of your life, but we have faith that all will go fine and he will have successful surgery and an uneventful recovery!

 

[gijanet]

It's hard to say..........

It's hard to say..........

I need to start planning the rest of the time. I have the two kids to deal with, plus Garin in the hospital. I will just take myself off the work schedule until I see what things pan out to be here with recovery.

Any hints on things I need to know for time management? Do I want people to come down to the hospital with me to wait it out? I know I will be there, his dad ( ex hubbie, but on good terms) probably his grandmother...what the heck do you do while they cut open your child???

This is such an individual thing. some people like company; some don't. Take the time that you have been most anxious in your life - parent, sibling, or spouse having surgery or waiting for a diagnosis or ???? and multiply that times 100 - and that is how you are going to feel. Did you want to be around others or not? Yes, take crossword puzzles and a good book, but you won't be able to concentrate on either. I'm a pacer. (You always want to have at least one person in the waiting room, just in case they update.) I take the cell with me and go outside and pace and pace and pace..........

well, you get the picture. Good luck and many hugs and prayers. Janet

 

[cocoalab]

Fauxclaud,
It is a very individual thing. Time goes slow and yet when it is over you wonder where the day went. At least that is how it was for me. I had my husband, my inlaws, and one of our pastors.

I spent alot of time journaling, writing times and happenings so I wouldn't forget. I had a book but didn't read much. I got a call or two on my cell and that was a nice diversion, one was my sister and two were from heart moms I had met on line over the years.

If it is a long surgery take time to eat. You will need the energy after the surgery.

Do you have any good friends that can take the kids for a while? We had his two younger brothers stay with friends the night before surgery and for a few days afterwards. We had the Ronald Mc donald house and brought them there I think on Sunday the third which was mainly because we wanted to have them for the fireworks in chicago. They really didn't see much though anyways. If they are real young it is so hard to keep them happy in a hospital situation and frustrating for you. I know Andrew could only handle a few minutes with his brothers in the room at a time in the begining of their stay.

i know how scary this must seem. i will be thinking of Garin and praying for a flawless surgery. If you want I can give you my cell and you can call if you want to. I will probably still be home from work. Send me a private email.

God bless,

wendy mom to andrew 15 (l-TGA, bovine valve in r-a/v position 6/29/05)

 

[FauxClaud]

Countdown is on...

Countdown is on...

So it was his 14th birthday yesterday...the family came out in droves for this one and he made out like a bandit..I guess if there was a time to be spoiled this is it!
TOmorrow AM I am taking him to the hospital for Pre OPs....I can't beleive it is going to happen in 5 days!!
There will probably be a ton of folks at the hospital on Monday..mostly from his dad's side..as I have minimum family left, but I think two dear freinds are coming up from LI and Brooklyn to run "In-law" interfereence for me...not that I mind any of them being there. I am glad that they wiill be for Garin's sake, but having my girls there will be good. I don't have to think about my other two little ones for at least three days...
My anxiety level keeps rising everyday...what if's what ifs....bad stuff that I SHOUT at myself to turn off. I have awful luck..it makes me very nervous. I know it sounds crazy, but that freaks me out more than anything.
So just keep us on the good thoughts list please...

 

[Brad72]

I would like to wish you all the best for your procedure and will be having mine (AVR) the day after yours. I too am very nervous but have accepted that that there is nothing more i can do apart from pray and think positively. I have 2 young boys , Zac (4) Ethan (2), and use them for mental and physical strength as they will need their dad around for a long time to come. I think acceptance, visualising my recovery and being there for my boys are things that have helped me so far. Plus this wonderful site of course. Stay strong and best wishes Brad.

 

[Lynlw]

Hi I just went thru surgery w/ my son too, he just turned 17. as janet and wendy said who you want there is a personally thing, I prefer just to have my husband and I anymore since an earlier surgery family was driving ME nuts instead of being supportive. I usually (gee it stinks when you say what you usually do when your child is having surgery) can't really read so do word searches, then every time I get an update I update Justin's page and of course eat junk.
If Garin doesn't have a carepage or caringbridge page i really suggest starting one, it is so much easier to just do updates instead of having to remember to call people and since you usually can't use cell phones in CICU it is just so much easier, plus it's nice to read all the great messages.
If Garin has any questions, feel free to ask, Justin is pretty helpful we can't help w/ any med questions since Justin got a bovine valve for his pulm valve, but anything else, you can just email us or if Garin talks on AIM email me and I can give you Justin sn.
I will keep you in my prayers, please keep us posted I know this will be such a tough week on you. so if you want to email me please do,Lyn www.caringbridge.org/nj/justinw

 

[catwoman]

Claud:

Give Garin a big birthday hug for me. I'm sending wishes upward that he will have a very very boring surgery and a smooth & quick recovery. And that mom, dad & the rest of the family is OK, too!

 

[PJmomrunner]

Claud:

I'll be hoping, praying, wishing and believing in an uneventful surgery and recovery for Garin. Take care.

 

[FauxClaud]

So we went today for the Pre-Op at te hospital.

I have to say those folks are trying to make it as easy and "painless" as possible. We got walked though with Susan the Nurse Practiciner from Dr. Sett's Office, and Nancy, the Pediatric Card Social Worker. First a simple form, then a few vials of blood, than a quick chest x-ray, and a physical. The physical reveled a slight swimmers ear..so we got a script for some drops, and he also has some stuff to put up his nose. I was told there is some bacteria in the nose that can cause infection on the incesion line..so it's preventitive.

So..Monday is the big day..yikes!

We have to be there at 7am. ( not 6 as originially thought!!) He goes to OR and is put out first. I get to stay with him until he is alseep. Once out, they put in all the lines...He will have a central line in his neck, an artierial line in his right wrist and then two regular IVs. Catheter, breathing tube, etc..all get done while he is out.

The actual surgery will be starting about an hour and a half after he is in there. It is expected to be...EIGHT HOURS!!!! I am hoping that they just told me the longest possible time frame..and it will be less, but it is going to be a LONG day! Expected time on the heart lung machine is about 3 of those eight hours...yeah..that makes me FREAK. It just seems VERY long to me..I will be reading up more tonight on pumptimes. I know he is having the valve and the aorta both done, but it is a composite..so wouldn't that make it easier? Maybe I just expected it to be less..I was thinking 5 hours..not 8!

Right form OR, he goes to recovery and then the ICU..where he very well could stay. The breathing tube might or might not be out by then, depending. He will have 2 to 3 chest tubes for suction, leader lines to his heart surface as well as the central, arterial, and IVs...lots of machines, lots of beeping. We get to see him then...whether or not he remembers it.

Could be out by Friday and home for the weekend, or he might stay..depending on his INR levels..thats monitoring the Coumidin and his bloods ability to clot...if it's stable quick..then home we go..if not a weekend in paradise.

The hopsital is VERY nice. ( Maria Fareri Children's Hospital) ....all brandy new. 42" screen in his room..private room...all the comforts of a fancy hospital. and the Au ba Pain ( or whatever!...sheezz I'm not French!) in the lobby has some tasty looking foods...good coffee, and KRISPY CREME DONUTS!!!

He is also getting referred to the "Make a Wish" foundation. I guess they have expanded..so you don't have to be dying anymore..just a BIG deal. I am of course pushing for Disney...he is thinking more along the lines of a skatepark in the back yard..I have veto'd that already.

Tuesday is declared "Grumpy day" by the nurses.. I guess they are at their worst the day after. He will be walking around by then...they are very cognicent of pain control so hopefully he will be as comfortable as possible.


So that's the scoop...no, I am not as chipper about it all as I "sound", but what the hell is a mom to do? He is all and all pretty damn OK about it..seems resigned, not too nervous, and looking forward to the positive outcome of it all. I beleive we have Green Day tickets for September first...so we have a goal. Tomorrow we go out for slippers and PJs with buttons on the shirt so the heart leads have a place to poke though! Wooppee!

Just please..on Monday...say a little prayer, light a candle, send a happy vibe..whatever works for you!!

Thanks!