Tuesday, January 22, 2008

What's next?

I've been hearing this question from family and friends and the answer is we still don't know. The teams from UCSF and UCD usually conference on Fridays, but since our case was on Friday I doubt they had a chance to discuss it. We have an appointment with cardiology on Thursday, and I don't know if they will have any information for us then either. I will be calling Drew's cardiologist today though, because he should at least have the results and can share what his opinion is. I think it may be better to take Drew to the appointment on Thursday and just talk to the doctor on the phone on Friday. He's old enough now to understand some of what we're talking about and I don't want him to be scared. This cath is the first time that we had the doctor explain the risks and sign consent in another room. We really need to be careful about what we say in front of him.

Since Friday I have been waiting for my very bad day to happen. So far I have avoided it. It is my hope that since today we will be resuming our normal activities I may not have one this time. What a blessing that would be! Thank you to our wonderful friends and family who have watched the kids, made us dinner, and let us know they cared. Your support really means a lot to us.

I've had this rolling around in my head for a few days now so I think I'll just get it out now. Right before our appointment someone asked me if the cath is a big deal. And while it's not a big deal in the way that having my newborn sliced open, his chest cracked and his heart stopped is, it is a big deal. This time I was not as worried about him physically, although there was a small seed of worry that he'd be ok. (This was not helped when the doctor explained that they might tickle his heart and cause it to beat an extra beat which would require them to shock him out of it, or that they might puncture his heart causing it to bleed requiring emergency surgery, minutes before they took him up to the cath lab.)

The bigger issue for me is the potential long-term emotional damage that this is causing in my little son. And the fact that I can't do anything about it. This was the first time that Drew was scared before we left. He cried in the car and said he didn't want to go to the hospital. I just realized that he grinds his teeth in his sleep. My poor kid, who is the tender age of 4, is so stressed about his little life that he grinds his teeth at night. When we got home from the hospital Friday night we tried to discuss what happened that day with him. I asked him if he remembered what happened and he said "I was scared. I was scared of the operation." I tried to reassure him that it was ok to be scared, but that it was over and he was safe now with his mommy and daddy. But it breaks my heart. The things I have to say to him, that I never thought I'd say. As I explain that it's ok to be scared and angry and sad, but that being brave means doing what you have to do anyway, it hurts me. It's all I can do not to cry while I say it. And then there's the IV issue. God, that is by far the worst part of any of this. This time we were waiting in the hallway for them to get it placed. Well after three tries they gave up and did the procedure without the IV. But we had to hear him screaming while they tried. That is the only time I cried that day. Listening to them torture my child, powerless to stop his pain.

Anyway, things went pretty well with the cath, we got favorable results and we did get to go home the same day. But it was still a traumatic event. I am immensely relieved that it's over. And just enjoying the few days we have before we know when the next battle is coming.

8 comments:

Dina said...

You know - Jilly grinds her teeth like crazy at night. We can hear her grinding them from the other room it's so bad. I never thought about stress as being the reason she grinds - that would make sense though. And she has been having nightmares about monsters tying her down - I always wonder how much she remembers about her surgery in May and wonder if these nightmares have anything to do with that. It is sad that we have to have these talks with them. I would much rather have the "sex" talk with my teenagers than have to talk about Jilly's heart issues, surgeries, procedures with her.
Maybe someday it will get easier.
I'm glad Drew did ok with the cath though and you get a plan here soon so you know how to plan for what is next.
Dina

Anne Marie said...

We've been wondering what is coming next, so we'll be checking in with your blog later in the week as you talk to doctors. I know it has got to be so hard to talk about such a difficult subject with Drew, since he understands so much and probably has MANY tough questions to answer. It sounds like you are doing a great job! And as for the worry of emotional scarring, I have no professional training on the subject- but just from knowing Drew, and other young children who have had to deal with this type of bravery at a young age- I think that these experiences may be traumatic at the time- but are also what contribute to his greatness. Drew is one special little man! Hang in there and keep on being the amazing mom that you are.

Molly said...

Nobody could ever wish this on their little angel. I can't even imagine how hard it would be to help your little one process through such big events. But I know that God is going to do amazing things with Drew's life... in him and through him. His story touches people already!

UbrStrBksMom said...

Having been in Drew shoes I can honestly say that the memories fade. It doesn't make it easier and having to go back in makes them some what fresh again... just know that in this case time does heal....

All 3 of my kids did the teeth grinding thing at night and they outgrew it around 7 years old....humm maybe i had stressed kids...

Praying for you sistah.... feel the cyber hugs coming your way? Take good care of you and just believe that the "bad day" isn't coming....

Michael said...

Great post.
Thanks for sharing your thoughts with us. We have been considering the same type of issues lately. Sophia is about 40 months old and is much more aware of her situation. She will be having some minor surgery in February and a cath in June. But I am guessing she will be 4 before she has her VSD closure. We are doing our best to make since of it all for her. But as she gets older it certainly gets more difficult. Best wishes to Drew and family.

Anonymous said...

Never once did it cross my mind that this is not a big deal. One would have to think that anytime you hear your child scream out of pain and there is nothing a mother can do about it is a HUGE deal. Hang in there!!

Vanessa said...

By no means is a cath a little thing. They are messing around the heart and that is a HUGE thing. You did so well and I'm so glad this is over. I will be checking back to see what the game plan is. I am always thinking and praying for you all. We will get through this next surgery TOGETHER! Your not alone!

Mother in Chief said...

I've been wanting to respond to this post for days... I guess I wish I had something wonderful to say, or something reassuring about how kids will forget all this stuff. But I don't. Riley talks about the hospital frequently. He often starts out by saying, "Mommy, remember when I was in the hospital and .... " And when friends come over and we read books, he often picks out hospital books, like "Gaspard in the Hospital" or Mr. Rogers's "Going to the Hospital." It's like he wants other kids to know that part of him. All I can say is that it seems like smaller kids don't hang on to the bad stuff as much as the parents do. When Riley talks about the hospital, he often thinks of the playroom or the wagon rides or looking out the window at the cars or playing Bingo. I think the worst of it, he doesn't really remember that much because a lot of those medicines have a bit of amnesia medicine in them... On the other hand, those are the worst parts for parents. We remember the worst stuff because it was the most traumatic for us. That said, I do wonder what it will be like the bigger he gets and the more he can worry and fret about stuff that is going to happen or might happen. Hang in there... xxoo Suzanne
p.s. Love that new picture of Dandrea!