Friday, April 13, 2012

Cleft update

First of all, thanks to all my friends who offered their support and comments in relation to my last post. It was really helpful for me to vocalise in advance what I needed to say at this appointment, and I went away thinking that it went about as well as it could have, given all the circumstances. Thanks also to those who offered suggestions - in particular, a friend suggested that I bring Bernard along with me. For some reason, I hadn't even thought of that but he came along and I was especially thankful for his support.

Today, our regular cleft doctor was on vacation (!!!) and our appointment was with one of his colleagues. That meant that he could not comment on some of the specifics - for example, he did not know whether our doctor had attempted to schedule surgery yet or not. He also could not comment on why Maddy's doctor would tell me 1-2 months and write 3 months in her file (although he failed to see why I would be bothered by that, "Two or three months is practically the same", he said).

He did seem to listen to our situation and he said they would attempt to schedule the surgery in early May. Usually with cleft repairs, the children are in hospital for 4 days. Maddy's cleft is wide and she does have a theoretically "weaker" airway so we should expect that she may be in hospital for longer than that. I'm really hoping she doesn't have more than 24 hours in PICU because I really don't want to be up there on the same floor where she spent her first 4 months (with the same ridiculous visiting hours - 3pm-8pm only)...

My main frustration today was that the doctor was extremely hesitant to give us ANY contact details, insisting that if we wanted to contact Maddy's doctor, we should do so through the hotline. After telling him "that is not good enough" over and over (I've tried that MANY times before and a) people don't answer the phone, or b) if they do, they don't speak English, or c) if they do, they are pretty useless at answering any of my questions), he did give us another number to call where we could specifically pass a message on to Maddy's doctor and ask for HIM to contact US. I could see that was the best we were getting for now so we'll see how that goes. I may have more success if I ask Maddy's doctor himself next time - I know that doctors are reluctant to pass out details for other doctors...

Maddy's doctor should be getting back from his vacation next week and the doctor we saw today said he would pass on the details of our discussion and he may get back to us - but I will not be holding my breath for that either. I might wait a week or two and try calling and leaving him a message. If all else fails, I do have the email address for Maddy's hospital pediatrician and in the past, he has forwarded emails on to other doctors for me. It's not something I want to abuse, but if I really do not hear anything from Maddy's doctor within the next couple of weeks, I may need to do that.

So for now, I'm hoping that surgery actually WILL be in early May - as to whether that happens or not, we'll just have to wait and see...


  1. Saw this in the ny times today:

  2. Goodness Nicole! I read your posts and I feel like going in with you and straightening out those doctor's myself! Jeez, if I may, what $%#$! ( jerks politely )

    In any case, I can understand your frusteration, it seems that doctor's feel that because they see what may be 1000 cases a year of what our children have that they don't need to take that extra step to make things a bit more comfortable for the parents. Our children can be a handful and we did not expect to be spending 5-15 days out of the month in hospitals, they forget that we did not choose the job they have and therefore sitting in hospitals waiting for answers is not only frusterating, but depressing and a feeling of powerlessness seeps in. Not getting answers and having to come back and hear the same thing after the last 10 appointments were fruitless is so un-nerving! Anyhow, I just wanted to say that I am thinking about you and little Maddy and sending positve vibes your way and answer vibes to your doctor's!!

  3. hi nicole, I started reading your blog after seeing your message from Ryan's, my child also stayed at NICU at QM a few years ago, and I still remember how bad it was having to deal with these people in the hospital, i still remember they used my child as a study case, and a group of students would stand around her bed and discussing loudly about her situation one to two times a day everyday! it was so loud that my child can't even get her sleep. One day, i got so mad, I screamed at all of them, I said" if you can't save my child, at least let her get some sleep" after that, there was no more groups around her bed anymore,, sometime, you have to let it all out to make them understand what you are going through.. carmen

    1. Carmen - thanks for your message - QM can be really rough, particularly when I hear of people's experiences in other countries where the medical system is far more "friendly". I've had so many annoyances it's not funny. Some of the doctors are fantastic and kind, but they really are the minority...