[tweetybirdus]

We've got an appointment for the Cardiac Surgical Consult next week.

If anyone could offer any questions that we should ask the surgeon and the Pediatric Cardiologist, I'd greatly appreciate it.

[SuzBerg]

Tweety - Hmmmm I should know the answer to this one . Usually I have my husband go with me cuz he speaks "doctor" so much better than I do. We ask what exactly they are going to do with the surgery (ie re-routing E's hepatic blood flow) and what they expect the results to be (increase in O2 sats etc.). We ask what they think the recovery time will be and how long she will be in the ICU and how long in the hospital all together.

Let me tell you in advance the docs will most likely NOT have an answer to these questions. I usually get "we are planning blah, blah, blah but when we get in there things might change" and "we have no idea how long she will be in the hospital anywhere from 3 days to 3 weeks to 3 months depending on how she does". If this is a surgery they do a lot for her specific heart defect they should have pretty routine answers. They should be able to tell you how long the surgery should last (ball-park), and a few other things (I'm having a hard time thinking right now).

I will keep thinking about this and have some better answers for you (it's early and I haven't had enough diet coke yet). You might ask the doctors office staff things like, can you take a tour of the hospital, what is the policy on staying with your daughter (especially in ICU), having visitors etc. It's good to have a plan in place ahead of time for all these things.

I am thinking good thoughts for you and sending cyberhugs. Keep us posted on when the surgery is etc. - Suz

[devildogwife]

I've been trying to think of things too. For the first surgery, I was too numb and in shock to even really think, plus his surgeon literally had no time to explain anything.

For the Norwood, I asked approximately how long it could take. Overall, I think it was 11 hours from when he left his room in the PICU to when he returned from the OR. They can most likely give you a general timeframe, dependant on many factors. His surgeon would explain exactly what he would do (with pictures he drew) and the process of the surgery. You may want to ask if your child will need any blood transfusions. Will she need the heart lung machine (I don't know that much about TOF)? I'm really just echoing Suz. Do they have an approximate idea of how long she'll need to be in the hospital?

A couple other thoughts for you. After each of Cameron's surgeries, we could not hold him for a time. After the open heart surgeries, it was anywhere from a week to nine days (I think!). Know that you may not be able to hold her for a while due to all of the equipment they may be using on her. Honestly, it's shocking to see your child hooked up to so many things ( I think Cameron had 15 at one time maybe?). Maybe ask what equipment and monitors she'll come out of the OR on? I hope they are able to prepare you somewhat. For Cameron's 2nd OHS, they showed us pictures to prepare us for seeing his open chest and beating heart. He was also paralyzed and sedated for a while and was on the respirator for quite a while. Be prepared for 2 steps forward, 1 step back. I would also encourage you to be involved in rounds in the morning if you can. Ask questions if you don't understand something.

Another thing (I find somewhat humorous now), I started hearing all of the monitors alarming in my dreams. You ever have that Suz?

Hope that was somewhat helpful.

[SuzBerg]

Yes DDW I do hear the moniters alarming in my dreams too and it's been 4 months since Em's last surgery.

I wanted to post some post-op pics after E's surgery. She is on the vent and hooked up to a lot of tubes and machines (we counted 15 different tubes, wires, iv's etc). The third pic is 2 weeks post-op and the last pic is her NOW. She is doing so much better. I thought it would help to compare and see that she doesn't always look like a sick kid (although she is never really healthy, she does look a lot better now ).

(I'm not very technologically advanced so I hope this works and you can see them).

[devildogwife]

Here's some of ours too.

Attachment 73408 Attachment 73409



Attachment 73410 Attachment 73411


The first pic I hope will give you an idea of the extent of monitors/iv's etc (and vent) that can be used. The 2nd is after his first OHS at 10 hours old. The 2nd two are around 3 months old at home, happily getting ready for stage 2!
I hope that helps.

Suz-she's such a pretty little girl.

[SuzBerg]

Okay - I thought of a couple of more things, not questions for the surgeon but just things for you to prep once you get a surgery date.

I'm not sure how close you live to the Children's Hospital or if you would need it (depends on how long she's in ICU and if you can stay with her etc.) But I would definatley check into staying at a Ronald McDonald House if it's necessary and if there is one near your hospital. In Houston where we went last fall there is one IN the hospital that we were able to stay in (it was for parents of kiddos in NICU, PICU or CVICU it had a limited number of rooms and you only stayed there for the night had to "check-out" each am. They also had "Nap rooms" available that I took advantage of while hubby stayed with Em). The also had one close to the hospital that hubby and my boys stayed in when they came on the weekends to visit. And Em and I stayed there for 4 days after she was released from the hospital. It was such a benefit for our family and much cheaper than hotels.

Another thing that helped us was a website. We were able to update Em's webpage and instantly let everyone know how she was doing. It was much easier than calling a bunch of people and also helped people to understand what was going on easier than phone call. We post pics there and I keep a journal (which has been great therapy for me). CairingBridge.org and CarePages.org both are great sites specifically for people affected by illness, hospital-stays, surgerys, etc.
(I will pm you Em's caringbridge site info if you are interested in checking out)

There are also some really great online sources for info about CHD. You may already know this so I'm sorry if I'm being repeptetive. Welcome to Little Hearts - Parental and child support groups, health resources, family networking, information and hope for families affected by congenital heart defects CHD such as Ebstein's Anomoly, Pulmonary Stenosis, Total Anomalous Pulmonary Ven and Congenital Heart Information Network are two really good sites. There are tons more. "It's My Heart" published by The Children's Heart Foundation is a great book for parents. I also have several books written for kids about hospitalizations, chd's, etc. I also have a color book for when a kid needs a catheterization and when they get a pacemaker (so when your kiddos are older ddw and tweety let me know and I'll send you some). I realize your kids are still babies but these resources have really helped Emily to understand her "heart-leaf" as she calls it.

Okay I think I've written enough! Please let me know if there are any other questions or concerns I can help with!

[tweetybirdus]

We're about an hour away from the hospital. That wouldn't be too bad of a drive. Do you think I should still look into the RM House, in case I needed to get there fast? I guess I'll see if I can stay at the hospital with her before checking into that.

We have Webspace set up for Sabrina already with our internet provider, but I would probably email everyone rather than call. I think calling everyone would be just too much. Her site is Sabrina's Home Page .

Anyway, I want to thank you both for all the input and the pics. It helps me to know what to expect.

Kat

[tweetybirdus]

Isn't she sweet.

[athikers]

Your kids are all so adorable!!!! Wishin' I could post my chubby cheeked boy, but you'll just have to believe me. Good luck with the surgery.

[Lylac]

As ALWAYS Em is Gorgeous!! Tweety your baby is so PRECIOUS!! I second the good luck for surgery, we'll all be sending prayers atcha!

[devildogwife]

Glad we can be of help. Sabrina is a pretty girl!

I understand you wanting to stay in your own home. We stayed with my parents during Cameron's hospitalization, but we are only 10 minutes away. I felt like since we were so close, someone else might really need the room a lot more than we did.

I would recommend that you at least stay at some type of RM house the first 24-48 hours as they are the most critical.

Emailing everyone is a good idea. Doing that was even too much for me, so I'd call my mother and she'd email people. It was pretty amazing; people all over the world (Nicaragua, Dominican Republic, Canada, Ukraine) would be updated and prayed for our son.

[tweetybirdus]

Okay, we have surgery scheduled for the 24th of March and I'm a nervous wreck already.

[SuzBerg]

I think the hardest part about all of this medical stuff is the waiting and the worrying! I know it's going to be long couple of weeks until the 24th for you. Try to relax (I know impossible) and concentrate on that adorable baby (and her picture is ADORABLE). Keep posting here and we will support you! HUGS - Suz

[devildogwife]

So tweety do you feel like you got a lot of your questions answered at the consult? Did it just make you more nervous?

I know heart surgery is so terrifying. I really feel for you going through this. I can't imagine knowing about a heart defect and having to wait, as Cameron's was a BIG surprise! Cameron will be following with his next (4th surgery) shortly after your daughter. Looks like we'll all be able to support each other a lot this spring.

[tweetybirdus]

Yes, they answered our questions. We reserved a room at the RM house right down the street.

Do you have a date for Cameron's procedure?

Thanks for all the support.