HLHS-Glenn

[tbulkley]

So Maddox is approaching 4 months and I've been really thinking about what's next. So far things have gone as planned and expected. With the exception of the infection that landed us in the hospital for an extra 10 days. Of course I have a ton of questions about the Glenn procedure. We see Dr. Pinto next week, so I can ask her. But I'd love to hear from some of you, about your experiences.

So in the Glenn they remove the sano shunt and attach the superior vena cava to the pulmonary arteries, right? Is there anything else I should expect?

How old was your child when they had the Glenn?

When did you check into the hospital? Day of surgery? Prior too?

Was there anything you had to do for your child in preparation for the surgery?

How long did the surgery take?

What was recovery like?

Did you feel like you needed to be at the hospital more than you were the 1st time?

How did you prepare your other children?

I'm sure I have a ton of other questions, but I'll start with these. :confused:

We are really hoping the surgery is closer to 6 months, but I want to be prepared for it to happen sooner. I'd love any help or insight you guys could give us.

Thanks!
Traci

[SBAimee]

For most kids the Glenn is the easiest of the 3 surgeries so they tend to spend the least amount of time in the hospital - usually around a week. Jack had surgery Monday, was extubated that night, and I'm pretty sure we were out of the PICU by Tuesday night. Everything moves a lot faster. The surgery time is a lot faster too. I remember being surprised when they came out and said they were already done. 3-4 hours I think.

We slept at home each night, even after he moved up to the 3rd floor, unlike after his Norwood when we were afraid to go futher than the University Guest house. We just made sure he had his toys and was comfortable, but the nurses took good care of him and he usually slept through the night for them, so i went home and did the same.

After the Glenn they get really bad headaches because of the change in pressures. They are pretty miserable for a few days. Jack looked like he had a massive hang over for about 4 days.

Also, something I didn't know before was that they have to keep their heads elevated after the surgery so the prop them up on lots of pillows. I had Jack sleep on his boppy for a few weeks after we brought him home just to keep him elevated.

In all, the Glenn was much easier than the Norwood, if for no other reason than this time you are not trying to deal with everything a few days after having given birth. That in and of itself makes the whole thing a lot better.

Good luck, and keep us posted.

Aimee
Mom to Jack, HLHS, 15 months
www.jacksonhardy.blogspot.com

[tbulkley]

Thanks Aimee! That helps give me an idea. How was Jack leading up to the surgery? I have Maddox sleeping in his boppy now. At first it was a precaution in case he had reflux, and now he's just so used to it he prefers it.

This week I've really been having this feeling that it's going to be soon. Maddox is doing well, but somethings different. Not sure exactly what. We're supposed to go see Dr. Pinto next week, but I think I'm going to call and see if someone can see him tomorrow. I don't want to be overly anxious, but it's hard to find that line of being intuitive and being anxious.

[Heart Mommy]

Well Gator is a totally different story as always... He wasn't able to have his Glenn until ten months due to heart failure. We rescheduled it 3 times... There was a whole list of things that I wanted to accomplish before we were at the hospital again. I am a little OCD, so having things perfect at home meant that I wouldn't even think about it or worry and everything would be perfect when we got home. We had to do another repair while Gator was having his Glenn so we expected to stay longer. He stayed 22 days... One thing we did right before the Glenn is have family pictures. Then we also had a little book a photo's on his hospital bed of how happy he was at home. All the nurses and Dr.s loved to look at him in his normal every day life. Our daughter got to take the big sister class at the hospital that helped her prepare. It is a big deal for life to shift again...The head aches are a pain. But they helped us manage them well with meds...
Lots to look forward to... Good luck

[tbulkley]

Aimee, I just read like a ton of Jack's blog. Thank you for posting so much!! Dr. Kaza did Maddox's surgery as well, and he really is an angel. From reading the blog it sounds like Maddox and Jack were about the same through the first surgery. Maddox did have a co-arc so they repaired that when they did the Norwood. Did Jack have one? I actually thought that was just part of HLHS, but the more I read it seems like not all baby's have that. Daddy was born with a co-arc though, so maybe it is genetic.

Gator's mommy (sorry I don't know your name yet...) Thanks for the ideas about the picture book. I think that's so great. I just had some pics done of Maddox and Bailee, and we are planning a family one in the next week or so. I know this is going to be hard for sister, I'll have to look into the sibling class. She did a little one with Joy before she saw Maddox in the hospital the first time and I do think it helped her.

[SBAimee]

Traci,

I'm glad you were able to read Jack's blog and hopefully get a little better sense of what to expect by what we went through. That's part of why we did post so often. We wanted to remember and we wanted to share it with other heart families like you.

I can't remember if Jack had a co-arc or not, to be honest. His aorta was small, but I don't recall them ever discussing co-arc.

I think you will be amazed how much stronger Maddox will be after the Glenn. They are so fragile after the Norwood and you are always waiting for when they will have their next surgery. Then suddenly they get the next one over with and start to really grow and thrive like a normal kid. Other than having to be careful about germs so we're now done with taking Jack to chruch for the winter, we are so normal it amazes me. Hopefully maddox will be the same.

Good luck and stay strong. You really are in the hardest phase right now and it only gets better.

Aimee

[Alli and Kyle Hicken]

Traci,

Our experience was a lot like Jack's experience, though we really expected it to be more like Gator's experience that Brynn shared. Grant had a really rough start in the beginning of his life and so we knew even before he left the hospital the first time (after 2.5 months) that Grant needed to have his Glenn at four months old. Due to family things happening, I begged to put it off a few weeks and we were able to, but truly the Glenn made our son so much more stable. It is incredible the difference (after the first several weeks of being home and getting them adjusted again!). We were told they like to schedule the Glenn in most cases around 6 months, so I would bet that after talking with Dr. Pinto you will probably at least have a time frame in mind for surgery. They might actually choose to delay based on the amount of germs in the hospital right now, so be sure to ask about that. Grant had his Glenn on August 6th and we were home exactly 7 days later (a true miracle considering Grant's history!). Feel free to visit our blog grantmeaheart.blogspot.com and read through the archives (June-August) to get a good idea of what we learned pre, during, and post Glenn. I too tried to document even little things to help other families as they approached the surgeries. Good Luck!

Alli Hicken
mom to Grant (HLHS, Heterotaxy, Asplenia, etc.)

[tbulkley]

Thanks for your input and for sharing your blogs/stories. It helps us out so much.

So we saw Dr. Pinto this morning and it went just as I had imagined. Maddox will be having his Glenn in the next 4 weeks. I never thought I would say this, but I'm glad. In some weird way I've been looking forward to this surgery. Probably because I know it will help him so much. So we're just waiting for the call to schedule the sedated echo and any other imaging that Dr. AK wants. And then we'll move ahead.

[rainsplats]

>things I remember about the glen
the surgery seemed longer even though it wasn't.

If you have a cell phone, (after checking in at the waiting room) head up to the room with the piano and all the comfortable couches (3rd floor north end). They'll call you with updates and phones get good reception there because there's nothing built above it.

right after surgery, she had all the same tubes and wires as the first surgery but she was bigger so it didn't look as scary.

it was harder to hand her over to the surgeons when it was time.


Seraph's glen didn't go that well. I mean the surgery went fine, but she didn't recover well. She was in the hospital for almost 2 months and came home on palliative care.

Don't be afraid of the palliative care team. They are fantastic. Though it's not great to have to work with them, they made everything easier and still follow Seraph's progress and jump up to help any time they can even though she is no longer on palliative care.


It seems like they started worrying more about the reflux along with the glen - I think most kids have the nissan around the same time if they need it.

After the glen, her upper body started growing better. her feet are tiny, but her hands are the same size as her twin's hands now. Her teeth started coming in and her hair started growing. It was harder to keep oxygen on her...sometimes we had to switch to blow-by oxygen.

she started rolling and being more interactive - definitely had more energy after the glen. She started tolerating being held...which led to liking being held and wanting to be held which I love :)

Hope things go well for you guys
~~

[tbulkley]

There was a cancellation so we are doing the sedated echo on Monday at 12pm. Is this a long procedure? I feel like a have a million things going on in my head now and no nurses milling around to ask. :) Is it like a major thing? I'm not sure if I should worry or what I should worry about. Or if I should have Dad take the day off and come with us? This is what I was waiting for, and now that we are scheduled I'm freaking out a little. So what can I expect???

Just got another call and Dr. Kaza wants a cath lab. I don't even know what that entails. I'm going to have to do some research. I thought I was ready for this.

Also, for those of you with boys.... did you have them circumcised? We had planned on it, and had hoped to be able to do it while we were in the hospital for the Glenn. Dr. Pinto had suggested that, but I just spoke with an NP and she said not for at least 6 weeks after surgery. But then there's the whole need to be off asprin thing. It seems like such a minor thing, but it's something we want to have done. I just want it to be the best time for him. So any thoughts on that as well would be appreciated.

[SBAimee]

Sedated Echos aren't too big of a deal. They just put in an IV, knock them out while a tech does the echo (usually about an hour and you can sit in with them), then they send you to the 2nd floor same day recovery unit.

Maddox is still tiny so they may make you stay a full 12 hours after they sedate him. That's what we had to do for Jack's first sedated echo, but for his second and all of them since then we were able to go home just a little while after he woke up and got down some fluids. I can't remember what the difference is. You may want to check with them beforehand to see how long you will have to stay. If it's the full 12 hours you'll want your husband there just to help with your sanity. If not, then it's usually not too terribly long.

Jack's never had a cath, but I know those take a little longer and they give you a pager to call you back when they are done.

Regarding circumcision, we really wanted to get it done and met with a urologist a few months after Jack's Glenn to make it happen and the doctor actually talked us out of doing it. We sometimes wonder if we made the right decision and hope Jack doesn't get made fun of some day, but we just decided not to put him through one more thing. It's a tough one.

Good luck, and just remember that he's going to be so much stronger after all this.

Aimee

[deanna.m.gourley]

I have a love-hate relationship with heart caths, Gracie has had more than I would like to say she has had and I never feel easy about them.

You'll check in with same day surgery and the anethesiologist will come and meet you and then you will be able to walk down with him and Maddox to the cath lab. Once there the nurses will let you kiss and love on him as they explain that you will be given a pager and they will page you when they are done. There is a phone outside the cath lab that you will pick up when paged and then they will let you in. Also it is good to know if the cath takes longer than the estimated time you can pick it up for an update if you haven't gotten one.

Usually pre-glenn they can go in through the groin and leave his neck alone. Unless of course they can't get the images and pressure they need. The entry sight is so minor, Gracie always has little cut about 1/2-1 inch in length that are bandaged with pressure gauze that can be removed 72 hours later. (Make sure you get some adhesive remover if you don't have any, other wise both you and Maddox will be miserable during the removal of the bandages. Just ask the nurses for some packets, or contact me, we live in PG too and have a whole bottle.)

When you are paged the doctor that did the cath will sit down with you and show you all the images they took and what they saw during the cath. Most likely while you are talking to the doctor, they will wheel Maddox by and you can get a quick kiss in before they take him up to recovery, while you stay behind and finish getting filled in.

Gracie has gone up to recover in both the PACU and up to the floor, it really just depends on how the cath is tolerated and how long they want to monitor him. If only 23 hours or less you'll go to the PACU, I always pack an overnight bag just in case (if I don't have it packed and in the car we always end up having to stay). After you go over all the images and stuff, the doctor will walk you up to your baby. Gracie is usually always awake and miserable by then. The major reason he would end up in the PICU is if they can't extubate.

Gracie is a complicated girl so her caths have ALWAYS gone longer than the estimated time, but I think they normally plan 3-4 hours. Try not to get too concerned if it takes longer, its usually because there is difficulty manuvering through their little bodies.

We have had all of the cardiologists that due the cath, I think there are three--Dr. Cowley, Dr. Day, and Dr. Gray. Personally I love Dr. Day, he has done the majority of Gracie's caths and I think he goes through the images and findings in more detail than the other two.

Personally if you have to chose when to have dad take off from work, I'd say do it on cath day. The sedated echo really is so minor, that if you are like us and have to conserve days taken, you'd be ok alone. Just remember the tech that does the echo won't say much, then she'll leave to make sure she got all the images the cardiologist wants. Are dr. always comes and talks to me before we go up to recovery.

Hopefully this was helpful, if you have any other questions I'm here. My husband, Jason just informed me that him and your husband went to school together.

Deanna, mother to Gracie HLHS, Morgan HH

[Alli and Kyle Hicken]

For us, we only wanted to put him under anesthesia once and so they combined his sedated echo and his pre Glenn cath into the same day. It was nice because he was knocked out only once and we didn't have to travel back another time. That also meant that we were not present when they did the echo, but we had done so many by that point that I didn't care. If you would prefer it all at once, it can be a trick to get the scheduling, but it is doable. We had to do it that way since we live 4 hours from the hospital.

Deanna gave a really great picture of what the process is like, so that should help. Just be prepared that waking up from anesthesia post cath lab is no fun and you will probably have a pretty miserable little guy for a few hours. Grant hates being restrained to keep his legs straight for the recovery time afterward and he was more mad about that the last time than he was actually in pain! Eventually he got some morphine that made him fall asleep again and I watched movies on the laptop until he had sufficiently recovered so we could go home.

As far as circumcision, it is a tough decision. We wanted Grant to be circumcised while in surgery (again to let him recover while he had the good drugs!) but our surgeon, Dr. Burch would not do it combined with a heart surgery. We had many complications and Grant ended up going in for many stomach and intestine surgeries and our GI surgeon did it without a problem. I would caution you to check with your insurance if you can get your surgeon to do the procedure during the Glenn. I know we had to argue it after the fact because the bill for doing it during surgery was a LOT higher than what it would have been to pay an office co pay at the pediatrician's office to have it done. I also felt bad because when they put the Foley catheter in after surgery, it seemed cruel since he had just been circumcised! Good Luck!

Alli Hicken
mom to Grant (HLHS, Heterotaxy)

[Heart Mommy]

Wow it is moving so fast... I can feel the stress. I am sorry those feelings are scary, but what you are feeling is valid and normal for us heart mommies...

The Cardiac Cath is a very good way and tool for the dr.s to be able to tell what is going on inside. It gives pressure readings and tell them if there is blockage and narrowing. They give sleepy meds to the baby and take him down to the lab. Instead of having updates by a nurse they give you a beeper to let you know when you can come and see him... I like having the personal updates a little better. Then when you go see him he will either still be sleepy or waking up.. His little groin area is sore and you have to try and keep it straight.. I think...The Dr. will go over with you the findings and what is really neat is you get to actually see part of the proceedure. With Gator they found a coarct that needed an angyoplasty. Because they were already in process they did the proceedure. I was glad that they did so we wouldn't needlessly be putting him under again very soon. The coarct has been something we are constantly watching but we have yet to need a stent. If we did need a stent it would have been done durring the Glenn. He had double pulmonary surgery durring the Glenn which is why our stay was much longer than most.
The circ is one thing I really wanted to research.. I wanted to make sure I wasn't doing something on "purpose" something I thought might hurt him... But we did it while he was having a sedated echo about six months after the Glenn.. Besides ear tubes it was one of the easiest surgeries that Gator has been through... We even went home the same day... It still blows my mind. His little boy parts were well taken care of and because of his heart they made him really comfortable. Although I did a lot of research, in the end I left it all up to his daddy. This was one thing that I felt he could make the most informed decision on. Also, I am the one home with him and would be more active in potty training and hygene and I just could not see myself having to teach him about cleaning and why he was different... I know it is silly... But he already has so much that makes him different we thought he would be happy we did it when he couldn't remember. One of the websites that I remember is nocirc.org ....

Good luck... I don't know if we will see you on Wed. but I plan on going to Abel's Funeral. I actually live in their stake and didn't even know Jill, Steve, or little Abel.

Brynn Homer,
I am the IHH Sec, I am married to Jeff, we have two kiddo's- Ryleigh who is 5 and heart healthy, and Alex (gator) who is 2 and HLHS.

We actually have so dang much in common it is silly... Same amount of kids, in order, same genders, same heart baby diagnosis... You even spaced them the same as us...

[Heart Mommy]

You had the cath today... Oh man I hope everything went well...
I will have to buzz over to your blog and leave you a comment.. and see how it went...:D

[tbulkley]

Thanks everyone! I LOVE this board and all of your help! It makes this much easier. Maddox had his sedated echo yesterday. It was a long day, went and had his 4 month immunizations at 9 and then up to Primary's at 12. We got home at 5:30. Maddox cried most of the way home. He'd be fine and then just start screaming. Then when we got home he wouldn't eat, he just cried and cried. It's so unlike him so I was thinking it was maybe just an effect of the sedation. Finally around 7:30 I was getting so frustrated. I had a thought to take off his socks and I found the problem. The nurse that took his iv out of his foot wrapped it way too tight! His little foot was so swollen and purple! I was seriously ticked, but grateful I finally figured out what was wrong. As soon as we got the coband off he was so much happier, ate, and went to sleep. He has a nice bruise this morning. Ugh!

On the way home they called and scheduled the Cath for the 4th. Which happens to be daddy's birthday, guess we'll have a date at the hospital cafeteria. :) Hoping to have a surgery date today or tomorrow.

Brynn, I am planning on going tomorrow so I'll look for you. Thanks for the blog comment. That's so sweet of Gator to pray for his heart friends. Awww

[Heart Mommy]

Traci,
Did you just say that you had Maddox's 4 month vacci's done... Shoot, If he has surgery in the next couple of weeks he will have to have all those shots again... Something like when he goes on bypass for the Glenn it erradicates them from his system... Check with the nurse but they ALWAYS had us wait on those for at least six weeks... before and after a big surgery... Poor baby.... Man you can't win for loosing... you might want to call your cardiologist and make sure I am not up in the night... See you tomorrow...

Brynn

[tbulkley]

That's just crazy. I actually had called and talked to Dr. Pinto and Annie (NP) to be sure he could have the shots and the echo in the same day. Both know that we are having surgery like any day now. Hmmm. I guess there are so many things he doesn't have to deal with though, that a few extra shots shouldn't be so bad.

It seems like most of the kiddos with HLHS also have at least one other issue. I was starting to think that maybe Maddox's co-arc was his 'extra' thing. But I asked about that when we had our echo 2 weeks ago, and the tech told me that all HLHS kiddos have a co-arc, it's just part of it. Weird. I think I'll ask Dr. AK.

[tbulkley]

We got the call. Maddox's Glenn will be on December 8th. Here's hoping for sanity in the next 2 weeks. :)

Brynn,
Linda confirmed the part about immunizations. He'll have to have them again after 6 weeks. I was so worried about making sure he was up to date before the surgery. (saw you at the funeral, sorry we didn't get to chat. Your kids are so cute! Seeing Gator was nice, a little glimpse of what the future holds.)

[Heart Mommy]

As you could probably tell those two kids were being rather naughty. I am incredibly grateful for those little naughties. I wanted to stay and meet you, but I just knew that being respectful was the better path. There will be many more occasions. Hopefully when things are more settled with Jill and Steve they will join the angels portion and our group/family and still be a part of the heart community. Although I do understand that everyone grieves differently and some are more private then others so it might not suite them... Either way we wanted to be there to honor Abel, if only for a short time... If found out we are actually in the same stake. We just live down the road from them.

Dang it about the shots. I did the same thing before with Gator. That is how I knew about them. I wondered and hoped it had changed. Well, if it is just shots we can live with that right...

Are you blonde? were you wearing a purple shirt?... If so I know who you are.. If not... well dang it, I might have to come visit Maddox in the hospital.
We have Cardiology on the 14th of Dec....

[Heart Mommy]

Duh.... We KNOW Maddox is going to do really good in the Glenn and will be home super fast. So I might not catch you guys on the 14th... But, I did want you to know that I have a crib wedge if you would like it... It is a foam thingy you put under their crib mattress to elevate it.. This helps with those crazy Glenn headaches... If you would like it, it is yours.. Just pass it along to another heart baby when your done.