Surgery delayed again...

[Amanda_H]

Hi all,

I'm frustrated and just wanted to ask whether anyone else had this as well? We were supposed to have surgery last Monday, which got cancelled as Ollie had an infection. Then it was postponed until this Monday. However, we went into the hospital on Friday and his neutrophil count is still down so it's postponed at least another week... Has anyone else experienced this?

Of course I don't want Ollie to have the surgery if he's at all at risk of developing an infection. It's pretty stressful though as it feels like we get all psyched up ready for him to have the op and then at the last minute it's postponed. The NS and paediatrician are going to speak with a haematologist on Weds this week anyway to see if there is a real threat to Ollie if we were to move ahead with the op while his count is a bit reduced. Although his case isn't urgent the NS really wants to move forward as Ollie is 6 months old and they prefer to do the procedure between 3 and 6 months (although it's not endoscopic, so I know from all of you it can be done later).

Thanks,
Amanda
(mum to Ollie - sagittal synostosis)

[hayley]

Oh no thats awful i never had that but just wanted to say i hope that Ollie gets better and can have surgery soon it must be so hard for you xx

[Perla]

Wow,
I think most of the Moms had a long wait rather than a surgery scheduled right away and then cancelled twice.

Good luck with everything!!!

My son had a Posterior CVR done.. I am not sure if there is any age limitation as far as the endoscopic surgery. You will get some feedback here.

Best,

[China]

I some what understand your stress. I had my sons surgery cancelled twice.
But for different reasons the nuerosurgeon had to go to Haiti to assist the ones in need and the second time his mom in law passed so it was understandable. But finally he had it done on March 15, 2010

[*jules*]

ugh...I can't imagine being cancelled on - TWICE! But, as you know, it's for the best altho knowing that doesn't make it any easier. Sending some hugs and saying a prayer that Ollie's neutrophil count improves and you all can get this show on the road! Hugs!!!

[fitmomof2ae]

So sorry...The waiting is so hard. We had our surgery postponed several times on the day of surgery due to complications from other surgeries, but we were fortunate that surgery occurred on the day scheduled. It was just postponed about 4 hrs. We thought his surgery was going to be postponed because he was a little congested on surgery day, but they said he was good to go.

[Sawyer's_Mom]

Oh, so sorry to hear that! I couldn't imagine having it post-poned twice. The wait is agonizing! We still have 3 1/2 months to go and being that far out I'm afraid of reschedules too. I sure hope they get things figured out and Ollie gets better for surgery. At least it sounds like they really care and want to make sure he's in tip-top shape! Hang in there!

[Amanda_H]

Hi there,

Thanks for all of your kind words... I probably sound impatient as I know we're lucky really that everything has moved so quickly! It's just a bit of a rollercoaster up and down. Anyway, good news is today we were back at the hospital and Ollie's blood tests are now normal

The NS is really keen for him to have his operation as soon as possible (that alone freaks me out somewhat I have to say, but they really want him at 6 months - he's 26 weeks now and I know a lot of you have the op a lot later so I'm not sure why it's so super critical, but hey ho, Germans like their protocols etc!). Anyway, the operation is now scheduled for Tuesday! We go into hospital at 10am on Monday and all being well everything will be done by Tuesday lunch.

Naturally I'm now beginning to freak out about it all... So far I've managed to keep calm and reading everyone's stories, experiences, etc has really helped. The thought of handing over my little boy to the surgeon though... phew that's a hard one to deal with! I find it all really hard. I know when I look at Ollie that his forehead has bossed a lot - and is getting worse. Looking back at photos taken at birth you really can't see it at all and now it's really obvious. He's a healthy, happy little boy though and an absolute delight and I find it really hard to take such a happy boy and put him through such a big operation. Of course I know we have to - even if he has no risk of ICP, I still believe we have no real choice as it needs to be corrected... I just feel guilty about it. I know he'll bounce back, but it's a big worry.

I'm rambling again though, stress does that... At least by this time next week we should be on the other side and his swelling should be improving... I'm sure in the next few days I'll think of questions I've forgotten to ask and so will be asking for lots of advice...

It's great to know you're all out there though with lots of experience and advice to hand!
Thanks,
Amanda