Update Post #83. DS2 is going to have open heart surgery. help.

[liz]

Hi all. We just found out a few days ago that DS2 is going to need open heart surgery to repair a hole in his heart. We knew he had a heart murmur, but we were shocked to find out after his Echocardiogram that the type of murmur he has can only be repaired with surgery. The last few days have been really, really hard for DH and me. DS2 is only 5 years old, so we haven't told him anything yet. We have been referred to an excellent childrens hospital. We expect the surgery to be in March.

So, wonderful and supportive BBBers, what advice can you give me? Have you ever had a child hospitalized for surgery? How/when should I tell DS2 and his older 8 year old brother? What do I bring for a long hospital stay? Do you have any books, links or websites for me or the kids to help us through this?

Any words of wisdom or comfort would be appreciated. We are still in shock and are having a tough time dealing with this news. Thank you.

[crl]

I don't have any advice, but want to offer my prayers for your son and whole family.

Catherine

[Ceepa]

:hug: I am saying prayers for your family.

I see you're going through a children's hospital. Often there's a contact person who can help you through some of these questions. I would see what resources they have.

[lizzywednesday]

First, breathe. We've been through corrective procedures ourselves with our not-yet-2-yr-old DD. It's harder on us than it is on her! She's had 3 cath procedures so far - two balloon valvulotomies, one stent insertion, one stent closure and one surgical mesh closure for a PFO. (The 1st balloon valvulotomy took place when she was 12 hours old; the stent was inserted at 6 days; the closure, repeat valvulotomy and mesh device all happened this past September.)

Are they certain it can only be repaired via open-heart and not cath? (Have you seen a 2nd doctor for a 2nd opinion? They're doing insanely awesome work with cath procedures these days.)

Second, there's a great guide for parents to help prep their child for a hospital stay at the Children's Hospital of Philadelphia website here:

http://www.chop.edu/visitors/before-your-visit/preparing-your-child.html

Third, there's a great kids' guide at CHoP, too:

http://www.chop.edu/service/child-life-education-and-creative-arts-therapy/kids-health-galaxy-our-web-site-for-kids-provides-education-and-fun.html

http://www.chop.edu/kidshealthgalaxy/index.html

(If you'll not be at CHoP, check the children's hospital website where you'll be; they probably have the same kinds of resources!)

P&PT to you and your family, mama! Your DS will do fine.

[missym]

No BTDT advice, just lots of P&PT and :grouphug:.

[dogmom]

I would suggest you call the pediatric department where you are having the surgery done and ask to get in touch with the social worker and any support groups. I know my hospital has a lot of resources for parents and families. They also have a patient education center. This can be also very helpful in preparing for some of the mundane aspects of the stay (food, parking, visiting) that will be hospital specific.

[BDKmom]

Just wanted to send lots of P&PT to you and your family. I hope you find the support you need to get through this as easily as possible. :grouphug:

[wendmatt]

Gosh how scary for you. I am so sorry you are all going through this. Sending pt&p for your ds. I know for dd that she has always done well with talking about what is happening/going to happen and reading lots of books about it, Berenstain Bears at that age (not sure if they did a dr one) and stories about what's happening. Can't remember if 5 is too old for Curious George but he has a hospital visit. Just to make things less scary. PP gave great advice.
Good luck and I know it sounds stupid and impossible, but try to relax, it'll be better for you and the fam!

[pinkmomagain]

No advice, but sending you lots of positive thoughts as you go through this. Hope it is a smooth and successful surgery with a swift recovery.

[wimama]

P & PT for everything to go smoothly and for a speedy recovery!

[TxCat]

P&PT for you and your family.:hug:

The CHOP resources posted above are a great place to get started. Most hospitals have a patient liaison office that you can work with and they can probably get you in touch with their office of Child Life - different names at different hospitals but those are therapists and educators who are trained in prepping children for their treatments and hospital stays. They should be able to help you tremendously.

[MMMommy]

I have no words of advice, just words of comfort for you. Lots of P and PT for your son and family. :hug: Hoping for a smooth and successful surgery with a speedy recovery.

[arivecchi]

No advice, but sending you lots of positive thoughts as you go through this. Hope it is a smooth and successful surgery with a swift recovery.:yeahthat:

That must be so scary. Hope everything goes as smoothly as can be. :grouphug:

[Indianamom2]

I'm so sorry you and your little guy are going through this. I will keep you and your family in my thoughts and prayers.

I don't have any advice except to say that kids are so very resilient and they often do better with this sort of stuff than parents. Many many Hugs!:grouphug:

[misshollygolightly]

Lots of PPT coming your way!!! I wonder if the Ronald McDonald House nearest your hospital might be a good resource?

[Green_Tea]

No advice, but sending P&PT!

[BabyBearsMom]

Couldn't read and not post lots of :grouphug: and PT's for your family!

[lizzywednesday]

Lots of PPT coming your way!!! I wonder if the Ronald McDonald House nearest your hospital might be a good resource?

They might be a good resource for things to help the older DC with the situation, for sure, but I wouldn't count on it.

Their support services are slightly different from the things provided by the hospital to patients and families. At CHoP, they did sponsor a few parents' lounge areas and often helped coordinate meal deliveries (DD was born during March Madness, for example, and RMH-Philadelphia provided game-friendly munchies and treats for Dads in their TV-lounge area) and other activities, but the Child Life and Social Work offices were the primary go-to for what to expect in the hospital, where can you ask questions and what kinds of resources are available for non-physical needs. YMMV, of course, OP, but I'd start with the hospital and work your way out.

[larig]

hugs and PTs for you and DS2

[zag95]

DD has had several surgeries for cleft lip and palate, the most recent being in the summer.

I highly recommend as PP suggested contacting the hospital's Child Life group to assist you. We also during our pre-op appt were given booklets that explain the process- and sometimes they may give you a tour.

We waited to tell DD about her procedure just a couple of days before. We didn't want her to be overly worried about it- or project our anxiety (which as parents is probably more than the child's). We tried to be very matter of fact about the procedure- this is what they are doing, you will stay over night, your mouth etc may hurt. Everyone is going to take great care of you and most importantly, mommy and daddy will be with you. (although not during the surgery).

There are things that can be done prior to surgery- distractions in pre-op; a little versed or other medicine to take the edge off and make kids more relaxed etc. You may want to have the pre-op or team explain all the information to you, esp how they do anesthesia, if they have blood on standby (or other products since it is heart surgery) etc.

Saying a prayer for you guys that all goes well and that your DS has an excellent recovery!:grouphug:

[TwinFoxes]

I'm so very sorry to hear this. My SIL is a pediatric cardiac nurse at a highly rated hospital. I would be happy to ask her any questions you might have. Feel free to PM me. I don't know where you are, maybe you'll be at her hospital! She was a big help to me when DDs were in the NICU. D had to have heart surgery at approx one week old. I understand what you're going through. :hug:

[anonomom]

I'm sorry I don't have advice, but I wanted to offer hugs. :hug::hug:

[Nechums]

My friend's DD had a similar surgery at a similar age. While it was an emotional roller coaster for the family, she's now a healthy and very happy four year old. Stay strong!

Sent from my Galaxy Nexus using Tapatalk

[mommylamb]

I'm sorry you're all going through this.

My nephew was born with a hole in his heart that was quite substantial and had to have open heart surgery at around 10 months. they also replaced a valve. He will need to have surgery again when he's a little older (maybe 9 or 10), and hopefully that will be it. He sees a cardiologist at least annually, but he's totally fine. My SIL has been told he probably won't ever be a star athlete, but there shouldn't be any other problems for him. He lives in England, so the particulars of his situation (it was all paid for through the National Health Service, so no private insurance involved) and the supports available to them are different than they are here.

Wishing you lots and lots of luck through this all.

[mctlaw]

Sending to you and your DS lots of P & PT. :hug:

[KrisM]

I also have no advice, but wanted to add support and positive thoughts to you all.

[trcy]

No BTDT, but wanted to send :grouphug:

[SkyrMommy]

No advice either, but many, many P&PTs to your DS and your family. :grouphug:

[HonoluluMom]

No advice, but sending lots of positive thoughts to your DS and your family and lots of :22:. I hope all goes smoothly.

[hellokitty]

:hug: Thinking about you and your little one and lots of positive thoughts that the procedure goes smoothly.

[BabbyO]

Wow...sending lots of P&PT your way.

I can't say I have any advice from a parents perspective, but I was 5 when I had my first surgery (not nearly as serious) and there are a few things that stuck with me (for good and bad).

keep in mind my surgery was 30 years ago and NOT at a children's hospital. First, I wish that my parents/doctors had explained a bit more to me about what to expect. I remember waking up in the recovery room and being scared to death because I was there alone for what felt like an eternity (it was probably 15 min at most). I know I ended up crying because I was scared.

So maybe you should talk to the doctors about what exactly will happen...and think like a kid. Will he be wheeled into surgery by himself, explain the mask that the anesthesiologist will use (this creeped me out too), will he have shots, IV's, oxygen, etc. Will he have a scar (I'm assuming). Maybe talk to the doctors about the best way to discuss this with your son...especially since they are at a children's facility. Ask what "fun" things you son can look forward to, as well. (The nurses made fun "people" balloons from the latex gloves and did a few other fun things).

Perhaps there is a book out there that talks about surgery for kids?

[maestramommy]

:hug::hug::hug:. My niece underwent lacroscopic surgery last year to repair a hole in her heart, I think to avoid what your DS will be having. It was so stressful. No btdt, but my prayers and good thoughts are with your DS. :hug::hug::hug:

[wencit]

Sending lots of P&PT for your little guy! :hug:

[Globetrotter]

As scary as it is, I'm sure everything will work out. Thank goodness for modern medicine!

Find a support group for parents with similar issues, if you haven't already (online or IRL). At that age, I used books to prepare the kids for new situations, so perhaps other BTDT folks will have specific recos, but here are some books about surgery and preparing for the hospital:

http://www.amazon.com/s?ie=UTF8&keywords=Surgery&rh=n%3A4%2Ck%3ASurgery&page=1

http://tchin.org/books/index.htm#Childrens_Non-Fiction

[Kindra178]

We will keep you guys in our thoughts and prayers.

[Melaine]

So glad you have plenty here with good advice. I don't know anything about it, but I'm praying for your family that you will have peace and the surgery will go super smoothly.

[trales]

Lots of hugs and prayers for you.

[madsmama]

Big hugs to you! My DD (2.5 now) was born with a large hole in her heart and had open heart surgery at 3 weeks old. We were at the hospital for 2 weeks. Is the Children’s Hospital close to your home? Ours was about 20 minutes away so we didn’t have to find a place to stay, but there was a Ronald McDonald house nearby and the whole family can stay there. I suggest what PP’s have recommended and contact the Children’s Hospital to see what is offered.

The hospital provided a parent bag which included toothbrush kit, comb, soap/shampoo & notepad/pen, but they were generic and I recommend bringing your own. After eating hospital food for a few days we started bringing food/snacks to eat. It saved money and there were microwave ovens/refrigerators for parents to use. Allow yourself some breaks away from DS’s room. Get outside for a few minutes of sunshine and fresh air. We even went to lunch a few times and went to a late movie once for a mental break.

Two tough moments – Last hug and kiss before the surgery and the first time you see DS after surgery will be very tough. (It was for us when we saw DD). There will be a lot of tubes coming out from the chest/arms/neck, but it gets easier and everyday there are less tubes. We took a few photos (none from the 1st few days), but I wish we took more to capture her progress. Kids recover so quickly, it’s amazing. The nurses were caring and wonderful, but be your DS’s advocate. No one knows him like you do. A social worker and chaplain visited us several times to talk and see how we were doing.

I don’t have any words of wisdom on telling him since my DD was a newborn, but I can say it all becomes a distant memory. I had a lot of tears/guilt when we first found out because I thought I somehow broke her in my belly and that she had to have surgery. It’s been 2 years since DD’s surgery and I can barely recall how traumatic it was at the time. My thoughts are with you! (Sorry this is so long!)

[AJP]

I don't have any advice but want to send p & pt to you all!

[luli13]

Wishing your family, especially your DS2, the very best :hug:

[boogiemomz]

Oh Liz, my heart literally hurts for you. How utterly devastating to find that out. I'm so sorry. Many hugs and prayers that it will be a neat and clean fix for him and you will NEVER have to worry about it again. No advice, just heartfelt sympathy and support for you, your sweet DS, and the whole family. :hug:

[MaiseyDog]

Just wanted to send hugs your way. I haven't read all the replies, so I'm sorry if any of this is a repeat.

DD2 had surgery to correct a congental bladder defect when she was about 2 years old. We didn't tell DD1 about it until a few days before. Even then, we didn't go into all the details of what was going to happen. We just told her that DD2 was going to go into the hospital for a couple of days. That she was going to have surgery to fix a problem which would take a couple of hours and then she would stay so the doctor could make sure everything started healing up like it was supposed to. DH and I tried to remain VERY positive in front of the kids. I really am a big believer that kids pick up on the signals of anxiety that we send out.

We had the surgery at the Children's Hospital and they had some amazing resources. So as others have said, get in touch with the hospital. We took some small toys and puzzles that she could play with in bed, but really she slept a lot. Bring snacks for you to keep up there. I'm not sure how other hopsitals work, but parents are not provided a meal tray and there were times were I was starving waiting for someone to come stay with DD so I could go grab a bite to eat. The nurses always said I could go and they would stay with her, but I couldn't stand the though to her waking up and there not being someone she knew in the room. Also, ask about having a second bed brought in the room. I slept on the pull out sofa for 2 nights before one of the nurses asked if I would like to have them wheel a bed in. DD2 was in a crib so I didn't have the option to sleep with her but really with the iv's and the catheter I'm think I would have worried about accidentally pulling something out if I slept with her.

I hope everything goes smoothly and he has a speedy recovery.

[elephantmeg]

oh goodness, lots of P+PT to you all. DD spent 2 weeks in the hospital at not quite 2 but I would think it would be a totally different thing at 5.

[citymama]

Sending major P&PT your way. I hope he has phenomenal doctors, an uncomplicated surgery, speedy recovery and is back to normal before you know it!

[edurnemk]

No advice, but I'll be praying for him and you.

[ett]

No advice but just wanted to send you P&PT. :hug:

[vejemom]

No advice, but P & PT!

[Liziz]

Sorry, no advice here, but just wanted to send you lots of support.

[Gracemom]

My nephew had open heart surgery at Texas Children's Hospital when he was 4 years old to repair several defects. He did great! Children's hospitals know what they are doing with kids. He had a lot of fun during recovery. They managed his pain really well, but he was a little loopy for a while. He loved playing his DS as much as he wanted, and making his bed go up really high. My sister had a hard time, of course, worrying about him. I lived in Houston at the time and spent the night with him one night so she could get some sleep. Definitely accept help wherever it is offered. All the best to you and your little guy!

[hillview]

P&PT DS1 has had some minor surgery. DS2 had brain surgery (as well as tonsils etc surgery). The brain surgery was scary. I am sending you lots of positive vibes. IME kids bounce back really really fast it is the parents who struggle :). Feel free to PM me if you want to talk more.
/hillary

[R2sweetboys]

Oh how scary for you all! Unfortunately I don't have advice, but I will pray that the surgery goes well. Please do keep us posted. :hug5:

[JTsMom]

Hope you're hanging in there Liz. :hug:

[alien_host]

No advice, but I wanted to offer lots of positive thoughts. :hug:

[rlu]

Prayers coming your way.

[Mopey]

I also don't have any advice but am sending lots and lots of good thoughts your families way. :grouphug:

[anamika]

Just wanted to send some PTs. Hope everythign goes without a hitch.

[infomama]

Praying for you all!

[MamaKath]

:grouphug:I have not BTDT, but wanted to let you know that I will be sending lots of P&PT to your whole family.

[lmh2402]

no advice but many p&pts :hug: :hug:

[army_mom]

I don't have any advice to offer but want to send P & PTs for you and your family! such an emotionally draining time. I'm sure your DS will be in great care. hugs to you.:grouphug:

[boilermakermom]

My thoughts and prayers go out to your family!

[ZeeBaby]

Prayers for you and your family.

[Melbel]

I am so sorry you have to go through this. Sending more prayers and positive thoughts for a successful surgery and a speedy recovery.

I think a second opinion is a great idea, preferably with someone who specializes and/or is known for repairing your son's type of heart defect. We know of families who have travelled to the best known specialist (also to repair holes in hearts).

[MissyAg94]

Prayers for all of you!

[lablover]

More prayers for you all.

[gatorsmom]

No BTDT advice.

I'm saying prayers to guide the surgeons' hands, prayers of peace for you, and prayers of well-being for your daughter.

And positive thoughts for your family all around. :hug:

[elizabethkott]

Many, many prayers and positive thoughts for your little guy, and your entire family.
If you'll be near Long Island, please PM me. I'd be happy to help in any way you and your family might need.
(((((hugs)))))

[shishamo]

Big hugs to you!
I want to third the pp to get a second opinion, just to make sure. My DH is a cardiologist (non- pediatric), so it might be different, but he has seen enough surgery cases that could have repaired in non-surgical manner.

[Jo..]

That must be super scary. I wish I could be there to help. In fact, I WANT to help.

Please lmk if I am local (within a hundred miles or so). I will bring you some food and give you a BIG hug.

[justlearning]

My prayers are with you, your daughter, and your family. I've watched my son go through surgeries before so I understand how hard it is as a parent to worry like crazy about your child. Huge hugs going out to you...

[kijip]

No wisdom or experience to add, just lots of hugs and support. :hug:

[Reina]

My darling, sending all the positivity your way. Stay strong!

We stayed in the pediatric cardiology unit for a little over one week when my DS was 7 months old. DS did not have surgery. We were rushed to the hospital in an emergency and ended up staying over a week. So I had no chance to get ready. I'd like to give you a few tips about extended hospital stays.

* Hospital food was inedible at our hospital. There was a parents' kitchen with a fridge. So I had my husband and mother in law bring food. Bring your own food and put it in that fridge. Ask your cardiologist what your DS will be allowed to eat after surgery. If your Doctor approves, bring food for your DS as well.
* Bring a pillow and a blanket for yourself. If your DS has a favorite blanket or other comfort items, bring those along as well.
* Bring your own toiletries and even hand soap. Hospitals only have extremely abrasive antibacterial soap. That soap dries hands badly. Don't forget moisturizer. Where the tubes attached on my DS's arms, his skin was getting very dry and itchy. So we applied moisturizer often.
* Bring clorox wipes.
* Wear and bring very comfortable clothes. Nobody will judge what you are wearing. Be comfortable.
Don't worry about how much stuff you're bringing to the hospital. You are going to live there for a few days and you need to feel comfortable. So bring your comfort with you.
Our hospital had free wi-fi and lots of toys for the kids. I had my laptop, and watched a ton of movies on netflix every night.
Wishing you all the best.
:hug::hug::hug::hug:

Antoinette

[MontrealMum]

I don't have any advice but I just wanted to offer you P&PT, and send some hugs. :grouphug:

[mjs64]

PPs have great advice. You and your family are in my thoughts.

[YouAreTheFocus]

My goodness, I am so sorry to hear this. My thoughts will be with your family and dear son!

[amandabea]

I'm so sorry you and your little guy are going through this. I will keep you and your family in my thoughts and prayers.

I don't have any advice except to say that kids are so very resilient and they often do better with this sort of stuff than parents. Many many Hugs!:grouphug:

:yeahthat: I'm so sorry about the need for the surgery. Sending you many P&PT.

[MamaMolly]

Liz, I'm sorry to be late posting, your little one has been in my thoughts and prayers since I read your post yesterday.

I don't know if anyone has mentioned it yet, but have you considered role playing? Maybe using a paper mask to pretend with the anesthetic, etc? We did something similar on a MUCH smaller scale when Lula needed several blood draws. She had a really horrendous one at about 2 yo, and I was concerned that it would be an ongoing issue since she has to have them for allergy testing.

A friend who's daughter went through major surgery suggested getting a toy doctor kit and role playing the whole thing, as much as we could. Her daughter's doctors were amazed when she hopped up on the bed and popped on the mask, taking huge deep breaths. They were so used to frightened, teary little ones.

I hope this helps, and that knowing the collective love, prayers and support of the BBB are with you helps too!

[Melarina]

Sending much love and many prayers to your family.

DS had open heart surgery when he was not quite 3 months old to correct a VSD, ASD, and PDA.

If there is a support group for families with CHD kids in your area, seek them out and get that support -- our state organization was a great source of information as well as emotional and financial support.

Much love and many hugs to you.

[A1icia]

My thoughts and prayers go out to you and your son and family. So scary to think about.

I had heart surgery when I was 7 years old about 34 years ago. Like the other poster, certain things stuck with me.

From my mom I learned that they told me nothing about the surgery until about a month before hand and then they told me I had a "special heart" and was going to spend the summer in the hospital at NIH and they would do lots of tests and then fix it. I remeber clearly visiting the hospital and getting a coloring book in preparation.

One thing which was very helpful to me was that the surgeon (not some other doctor, but the guy who was going to cut me open) explained to ME what was wrong with my heart and what he was going to do to fix it. He even drew pictures. He also told me that I had to have my heart fixed or I would get very sick. He felt that it was important that I understood why I was having to go through all this scary and painful stuff.

I remember the first morning of my hospital stay waking up and waiting for my parents and a nurse coming to take my blood. I didn't cry but was very very mad that she would do that without my mother there to hold my hand.

Befor surgery, I remember clearly worrying that the drugs wouldn't work and that I would be awake when they cut me open.

And most of all I remember how scared and miserable I was post-op in the ICU. The surgeon had given the chance of a sucessful surgery to be about 50/50 - so everyone was happy because the surgery had gone well. Waking up was horrible - I was in this dark room surrounded by equipment and had lots of tubes coming out of me and couln't really speak. Soon the my parents were there but then they were gone. They were only allowed back one at a time every 15 min. I was sort of going in and out of it for awhile but I remember the pain and feeling alone and frightened. There was a nice nurse but then she left and I didn't like the next one. It was much better once I got of the ICU although it was still a long and often painful recovery.

Things are MUCH different now but I agree with the other poster about trying to think about it from a kids prespective in preparing them for what is going to happen. Details are important.

Good luck - I'm sure everything will work out well.

[3isEnough]

Liz, I'm so sorry you and your little one are going through this. My DS has a congenital heart defect and we thought he would need open heart surgery a few years ago but so far he is holding steady. We researched every pediatric hospital and heart surgeon in the country in an effort to find the best. Since that time I've met many parents of kids who have had several heart surgeries and every single one I've met has had successful outcomes.

If you don't mind sharing, which Children's Hospital will you be at? Like others on this board, I'd be happy to bring you a meal and other assistance if you're anywhere near me.

Sending you P&PT.

[niccig]

PPTs for you and your DS. We're all here to help anyway we can.

[amldaley]

I have no wisdom to offer either but loads of P & PT. This was one of my biggest fears with DD when she was diagnosed with a heart murmur and began having seizures. Please keep up posted and super :hug: to you!

[liz]

I want to thank you all for all your posts and hugs. I have read each post (a few times over) and each one has given me comfort. I even showed the thread to DH. I think he now understands a bit more why I spend so much time on the BBB.

I want to share a bit more information about our situation. All of the results (the Echocardiogram and ECG) are being forwarded to the Childrens Hospital where it will be reviewed by a panel of doctors (different group than DS2 cardiologist). My understanding is that all the physicians must agree on how to treat DS2, so in essence they are giving us a second opinion. Our cardiologist explained to us that the type of murmur DS2 has cannot be repaired by catheterization nor will he outgrow it. If it is not repaired he will have life threatening issues later in life. Because he is so young and is asymptomatic, right now is the best time to do this.

We have been referred to the Childrens Hospital in Boston. Thankfully it just happens to be one of the top rated childrens cardiac hospitals (thanks to JTsMom for looking this up for me- and for everything else :kisscheek:). I have since been on the website and have seen the links for the Child Life Specialists, so thank you to all who pointed me in that direction. There also seems to be a lot of information for parents. Right now I can only stand to do a bit of research at a time, but knowledge is power and slowly things are starting to look a bit less bleak. Still, I have these moments where I just feel dread and can't help but think about all the things that could go wrong. I hate that I feel this way, but I can't help it.

Right now we are waiting to hear from the physicians at the childrens hospital. It's so hard to wait. We are trying our best to be normal and save the worry/anxiety for when the kids are not around. DH wants to plan a few fun things to do with the kids so we can have some positive things to look forward to.

Anyway, to sum it up- I am so grateful for this board and for all the support that is given when asked. From subjects ranging from silly to serious, this has been a great place for friendships. I will definitely update about our situation in the future. For now I plan on continuing to participate on these boards and hopefully return the love.

:love5: Liz

[DietCokeLover]

I missed this the first time around. How scary for you. Your family will be in my thoughts and prayers.

[JTsMom]

I'm glad you updated, Liz. I've been thinking about you a lot, and hoping things were settling down a bit. :hug:

Our hospital took the team approach also, and it's almost like getting 6 or more opinions! I found it really comforting. We were able to meet most of the doctors and other team members at various points, and the way the all work together blew me away. They all knew our story, and all were willing to talk to us about their thoughts on Jason's case.

I think contacting Child Life is a great idea. We took advantage of their services here in Atlanta during an MRI, and they were very helpful, even though we had such a simple procedure to deal with that day. As far as a time frame for telling DS, one guideline I've heard is 1 day in advance per year of age. Personally, that never worked for me, but I just thought I'd throw it out there. I usually start talking about more minor visits in general ways about a week in advance, then give specifics as it gets closer. Jason has a lot of anxiety, so we read appropriate books, role play things, use his doctor kit, etc. When we go for cardiologist visits, I actually drag it with us, and the nurses always play along and let him have masks and gloves and listen to their hearts and stuff. I teach him the real names for things and always tell him the truth, and make sure to tell him that I do, and that he can trust me.

Can you get your hands on an anesthesia mask? It might help to see one of those in advance, and talk about it. They actually let us keep ours from our last sedated MRI, so if you can't get one, let me know if you want me to mail it to you or something.


I think planning some fun stuff is an excellent idea. It's hard to stay strong all the time, but it makes such a huge difference when you can hold it together for the kids, which I'm sure you know. Just make sure you also take care of yourself, and let it all out. Lean on everyone around you, here and in real life too.

Counting the days until we can throw a virtual party for his successful recovery. :hug::hug::hug:

[SnuggleBuggles]

:hug: Wishing you and your family all the best.

[boogiemomz]

Thinking of you, sending more prayers, waiting for updates. :hug:

[JTsMom]

And before I forget, this links to a list of books that might help:
http://www.congenitalheartdefects.com/books.html

I've heard good things about Matty's Heart.

[Giantbear]

wow, praying for the best for your ds. That is a great hospital.

[fumofu]

Didn't see your thread until now.

Lots of hugs to you, DS2, and your family. I wish DS2 a successful surgery, and hope that by the time he goes in, you and DH will feel well-informed.

[cindys]

Lots of prayers, hugs and positive thoughts for you and your family! :hug:

Cindy
Mama to 3 boys...20, 5 & 3 :heartbeat::heartbeat::heartbeat:

[Jacksmommy2b]

Keeping you in our prayers!

Boston is an excellent hospital!

[tribe pride]

I missed your post the first time around and am just now reading this, but wanted to let you know I'll be praying for your DS, you, and your family. :hug:

[Kitten007]

Lots of prayers, hugs and positive thoughts for you and your family! :hug:

Amen! Lots of love and prayers for your family.

[hillview]

Boston Childrens is the best of the best. P&PT!

[curiousgeorge]

Wow. Just saw this and your update. Sounds like you are in great hands with your doctors. I am sending P & PT your way that all goes well.

[novmber]

sending tons of good thoughts.

[KpbS]

Thank you for the update! I think you are on the right path, doing a bit of research at a time--otherwise it becomes overwhelming quick. Child life can be wonderful--they were amazing when we were at Cincinnati Children's.

Praying for you and your DS :hug:

[lizzywednesday]

GREAT news!

Our daughter's heart surgeon trained at Children's Hospital of Boston; the year she was born, Boston was the #1 spot for cardiac surgery while Philly was #2 or 3 ... we are very grateful to the surgeon & his team. (They and CHoP are consistently rated in the top 5 in cardiac treatment by US News.)

I know it's hard to wait, but surgical schedules for "elective" but necessary procedures are a bit tighter than for emergency/immediate surgeries. (Our DD's cath this past September was "supposed to" be in August, for example, but the surgeon had quite a bit on his plate for the summer.)

Limiting yourself to only a site or two for research is a good idea. I still wake up in a cold sweat thinking about things that are discussed in meetings with anaesthesiology or listed on consent forms ... and then I listen to DD's breathing while she sleeps and I chill out.

Dealing with a treatment team can be challenging; we were directed to a social worker as well as a program nurse coordinator. Will you have the same resources? They can help a lot with the "human" side of things, which you will need while your DS is in the hospital. (Without those folks, I think I would have melted down more than once. Seriously.)

P&PT to you & your family. I think your idea to plan fun things for your kids during the hospital stuff is a good one and I wish I knew Boston better so I could give you suggestions! (Right now, I know Philly and NYC.)