new here, worried, anxious, tearful

[sarahanne]

Hi there everyone

Nothing like introducing myself by describing how I'm feeling in the subject title, eh?!

Firstly, thank you to everyone who has posted here. I've been a lurker over the past few weeks and your posts have helped my husband and I so much... it's a brave thing to share sometimes.

Our DS, Jack (18months) is going in for his operation this Monday, 12 March, and I'm so scared. I was doing fine, organising our hospital stay, arranging childcare for my daughter at home... until I read another forum today and there was a post from someone saying their daughter died during surgery last month.

It's been such a hard decision to make as Jack's condition is "cosmetic" and it was our decision to go ahead with the op. I'm so tearful right now...

Sarah

[MikenAustinsMommy]

Sarah... As with any operation there is a certain amount of risk involved. In my research, I have only seen 2 of the thousands of stories I read in which the surgery had devestating results. In my opinion, the benefits far outweigh the amount of risk.
The also told us that Austin's condition was "cosmetic" but if he didn't have it done, he could be blind and deaf in one ear. He would also more than likely be the target of every childs ridicule growing up.
The most important thing is that you are comfortable with your baby's surgeons. I think the lady on the other board made a comment that she should have gone to a Childrens Hospital that would have been better prepared in dealing with babies.

Take Care and Hang in there

[sarahanne]

Heather, thank you.

I'm feeling more positive again now after speaking to my husband. He basically reasurred by saying exactly what you've said. I don't think we couldn't go ahead with the surgery. Yes, there's a risk with the surgery, but there's a risk with not going for surgery too.

Fortunately, we're are very comfortable with our surgeon.

Thanks again.

Sarah

[Lori]

Hi Sarah. As I read your post I can feel the love you have as a mother. The decision you've made is the best one you can make, it's in a higher power now. I think you are doing your best and it's hard to not think about the bad things you hear or may worry about, but it sounds like you are trying to keep positive. Really, you will stop worring when it's over, so pace yourself!
My prayers will be with you and Jack on Mon.

[Katie]

Hi Sarah, welcome :hugg Like Heather said, in the thousands of cases, the above was the first I'd heard of with such tragic results. I can completely understand your fear! Dillon will be having a second surgery and I go back and forth as to what could happen if we don't have it, what could happen if we do have it. He is going to have it though, it is the best thing for him in the long run. Good luck to you all and Jack on Monday, can't wait to hear how he does :hugg

[sarahanne]

Thank you. I'm feeling better today. Yesterday was tough.

We're taking Jack to the hospital tomorrow for blood tests, signing consent forms, meeting the anaesthetist etc. Then back to hospital on Sunday evening, staying overnight before operating theatre Monday.

I'm hoping I'll feel even stronger after our visit tomorrow, but I guess this is going to be a rollercoaster of emotions until it's all over and done with.

Sarah

[Jennifer]

Sarah- Just wanted to welcome. I also had not heard of a case the ended in worse case scenario until your post. Trusting your surgeons is one of the most important things. If your anything like me, the rest of this week will be full of strong points and incredibaly scared points. :hugg Please keep us posted, and ask, vent, just talk- whatever you need-we're here to help where we can!

[jmal0802]

Hi, Sarah!
We are 5 weeks post-op from left coronal with FOA surgery. Like your case, ours was deemed cosmetic and right before they took our DD out of our arms, the NSG reminded us that it WAS cosmetic and not necessary for brain growth. Two hours later, the NSG AND the plastic surgeon commented on how much pressure they found inside and if we hadn't proceeded now, it would have been an entirely different surgery in 6 months. Both commented on how her brain actually "popped" when the bone was removed! Maybe they'll be more careful when telling tearful parents such a surgery isn't "necessary"! Trust your instincts as a mom and pray! It's easy to say all this now that we're done- it's the waiting that's so difficult. Hang in there... you've got lots of support on this site!!!

Jennifer
Mom to Riley, 14 months, not (too) crooked anymore! :pray

[sarahanne]

Jennifer, Jennifer and everyone, thank you!

We had a full day yesterday meeting with staff including Jack's surgeon and anaesthetist and both filled us with confidence. I talked with our surgeon regarding the risks, and she admitted that in the UK the were two deaths during this type of procedure last year, but reassured us that with her, and in her dept., this has never happened. I suppose there's risks with any surgery and 1% is low... just a very serious risk!

Sarah

[Addy]

Just want to wish Jack the best of luck and you'll all be in my prayers. Keep us updated :)

[sarahanne]

Many thanks. As if there's not enough to worry about... Jack was sick last night, and sleeping it off right now (Sat. morning here). Now concerned that surgery might not go ahead on Monday morning if he doesn't recover soon.

Sx

[Addy]

I hope Jack feels better very soon and monday is still a go. Sending tons of good luck vibes for monday. The worst part is before the surgery once it is done it's just healing and from what I hear it goes fast. Sending Jack lots of (((Hugs)))

[Matthews Mommy]

Any surgery is risky because of blood loss, infection. I know how you feel we all do! I truly was scared I would lose my son the day of surgery...my husband fell to his knees in front of the whole staff and prayed aloud for Matthew between our tears we had confidence in our surgeon that god would guide his magical hands and give him the strength to do his best. When my son was going home absolutely perfect and well...we were so relieved that I bought the surgeon a plack with an angel and a poem he replied "why did you buy me this?" I said "you are my sons angel that god sent to him"...he cried and said "I thought I was just a surgeon!"
God gives us many paths for reasons sometimes we need to meet someone for a special purpose, or maybe just to give us back faith...we may never understand exactly why but to keep our faith we do have and push forward!
Good Luck I will pray for you.

[sarahanne]

Jack seems to be not too bad now, he hasn't been sick since 12am this morning and he's been drinking plenty just not eating too much. We're going to see what he's like tomorrow - then I might need to phone the hospital.

Thank you for all your comments, thoughts and prayers. If all goes well, we'll be travelling tomorrow and I won't be online until we're back home, whenever that will be (they've given me a guideline of 7-10days post op...although after reading everyone's stories here it sounds like we might get out quicker than that).

I've gotten so much from your posts, thank you everyone. I'll be thinking of everyone else here on this board too.

Speak to you once this is all over.

Sx