Surgery Date

[mattricia]

They finally called with the date for Jack's sagittal surgery. It will be March 12. While i'm relieved to finally know the date, he'll be 8 months and one week by then.

I can't help but worry, b/c as many of us know, and the ps even said it's preferable between 4-6 months! The most frustrating thing is that it's due to the three month wait to see the neurologist and then another month for the neurosurgeon!!! I can't make peace with this right now. I just can't. No one cares that this might affect his future functioning. That's just how it goes... I want to scream.

[Jenny]

I'm sorry! I know how it feels when it seems like no one cares about your timeline. You want it done asap, and they have to go and make you wait like they have better things to do! You'll get through it fine though, just try to enjoy the next few months, because you can't get them back later..

[xl1200c]

It may be only a small consolation, but I would not think they would put you in a situation where they expected poor results, because it would reflect poorly on them too, and I'd think they would want to maintain a positive reputation for themselves. So, I would hope this means they are confident that they can do an excellent job in March.

Regardless of anything else, the waiting sucks, and I'm so sorry they are stressing you out.

[EmmaLacey]

Cathy - you always have such a smart outlook on things.

Tricia, I can totally relate to how you feel. The PS at Emma's first consult said 4-6 months was the optimum time for surgery and she was already 6 months old at that appt. When we first called for a surgery appt. it was going to be for early Feb (3 months later) & Emma would be 9 months old. I felt the same way you did. I was lucky that I was able to get the date pushed up and we only had to wait 1 month. I just made 1 phone call to the craniofacial program director and basically said that we really didn't want to wait that long.

Did they explain the procedure to you today in a way that you could understand exactly what they are doing. Our NS told us the reason they like to perform surgery earlier is so the bones are easier to cut through. With Emma, it ended up her bones weren't too thick anyway so it wasn't too difficult. Maybe it will be the same with Jack. They also had to "shorten" the length of her skull a little due to her age as the lengthening had already started to show in the back and forehead areas. They have the technology to do it and I'm sure they will for Jack as well. I don't think it makes the procedure any more complicated when the baby is a couple months older, just different. I would think that a difference of a couple of months isn't going to cause damage to your son developmentally. It just means they may have to dosome things different during surgery to get the best possible head shape possible. I hope I am making sense. I really feel for you and what you are going through.

[mrs j]

Tricia, i can totally relate to how you are feeling, when we first saw a n/s when Bradley was 18mths, we were told that surgery would be within the following 8wks, huh that was hard enough, until he was 2/12 and still no date, although we are sorted now, i know how frustrating this is, but please don't think that because you are having to wait a while that this will cause problems with Jack, as Cathy said, what they do does reflect on themselves. Getting a date is horrible, but at the same time a great relief, i had a hard time with it when i found out Bradleys surgery date, but now i am dealing with it and feel a lot better that things are now finally moving, and i can't wait to have it all behind us, big hugs to you.xx

[mattricia]

Thanks Jenny, Kathy, Heather, and Nancy for the encouragement. Somehow posting about wanting to scream to you all is almost as satisfying as actually doing it (and much better for my family...haha). Great point about their reputation on the line, as well. That really helped me.

Also, I found out that if there was pressure, he would be "inconsolably fussy" as the nurse put it. Not the case at all...he's a very happy, giggly boy.

I asked to be put on a cancellation list today to hopefully expedite the surgery. It gives me hope.

Hugs to you all.

[maddysmom518]

I can understand your frustration. We had our daughter's surgery for right coronal cranio scheduled for Nov. 28 and the plastic surgeon put it off until Jan 30. I know it hurts. You want to go ahead and get all of this over with. You and your family get prepared and then they go and change everything. Madison's surgery is scheduled for 2 weeks from tomorrow. As it gets closer, I realize that it was probably better that we did wait the extra 2 months. She'll be 8 1/2 months old at the time of surgery. I'm sure they don't postpone these surgeries without good reason. I'm sure eveything will work out for the best in the end. Keep your head up!

[sarahob]

I'm glad you got your surgery date. Gavin was diagnosed at 7 months and didn't have surgery until 5 days before his first birthday. It went great even though he wasn't the "optimal" age. Will be thinking of you. The period of waiting was the hardest part of the process for me.

[krisrabideau]

Tricia,
I can totally relate to your story. I also want to scream. Our daughter Devon is now 7 months old and we had her diagnosis when she was almost 3 months old. She is now booked for surgery on Feb 12, (she will be 1 day under 8 months) and we go for her pre-op appointment this friday the 18th. It has been so frustrating that the doctors do not seem worried that the wait might affect Devon's future. I am happy that the pre-op appointment is here, but now I am even more scared and I am worried I won't ask the right questions. We were supposed to have our surgery the first of Jan. but we were pushed back for another child that was older than Devon. I do not begrudge the other child I know that age is a factor, but at the same time my little one is also getting older. I sometimes feel they only do one surgery per month, but I know the doctors are really busy. I really liked our PS and NS and I have to believe they would only do the best for Devon. We will get through this, I only want what is best for our daughter.
Good luck to Jack in March and stay strong. My thoughts will be with you.

Kristine

Devon - 7 months (Sagital Synostosis)
Jessica - 13 years
Brandy - 19 years

[mrs j]

Tricia, the waiting is definately the hardest part, i feel completely helpless at the minute, i need something to do, something to keep my mind of whats coming, ive been writing lists of what to take for hospital, ive been ripping them up and then starting all over again, its weird cause i want something to take my mind of it but at the same time i dont want to think of anything else, i suppose thats why im on here so much, this place is definately a life line for me. I hope you get a cancellation and if you do let us know, thinking of ya.:hugg xx

[Springy]

Hi Tricia, I am sorry that the date is farther off than you would like. I do know that when they scheduled Libby it was a matter of both surgeons having to get together and have a date that they both can do it together. I know it is hard because Libby will be 15 months and 1day when she has her surgery! We knew something was wrong with her when she was three months old! Same story as everyone else except a different kid! Hang tough! We are all here for you.