4 Weeks To Go!!!

[Kitty]

Hi All,

I am going to do the big weekly countdown. I think it helps keep me sane if I can write about what I'm going through and share my experiences.

Tahlia (15 yr old) has a lung function test tomorrow (Wednesday) and her pre-op clinic on Friday. I'm told the pre-op is all day and pretty much a day of waiting around for various tests and can be pretty monotonous. So maybe I'll take a book

At the moment, I think I"m okay and probably dealing with this better than i did about 4-6 weeks ago, but I think that's because I've had access to so much info and support on here. Thanks guys!!!

My daughter still isn't talking much but i expect things will change over the next couple of weeks once we've had all our tests and things start to seem a bit more "real" and as the date gets closer.

Any replies welcomed and appreciated. I check here most days and look forward to reading the comments. Like i said, I think it keeps me sane and honestly, it helps me get through.

Thanks heaps.

Love
Lisa

[Pooka1]

I think this is a good strategy to have this count down. I think it will help others in the future in addition to helping you.

My daughter never really wanted to talk about the surgery right up to the day. And that was fine... her choice.

Good luck.

sharon

[WNCmom]

Lisa and Catherine--

My son Sidney (13) is also scheduled in November for fusion. His surgery will be on the 13th at Shriners in Philly. He, my husband, and I, who all have the same blood type, gave for him blood yesterday. It went well. He has had all his pre-op tests done, and only the final lab work and an MRI--("just to be sure") remain. We're holding up pretty well, but some days are hard. We are trying to keep busy, which isn't difficult--life is very full, in addition to the upcoming major event. Sidney was quite nervous at the thought of giving blood but did fine. Both he and my husband had to stay lying down for 15 minutes afterwards, though.

We are not doing EPO shots (they weren't mentioned), but when we gave blood, my son's blood count was very good (as was both of ours), so we feel good about that. Now we have to keep him in good health and well nourished so he can replace the blood he gave for himself as much as possible between now and then.

I've been out of town for the past week and haven't had time to catch up on other posts except yours.....it's good to know you are both out there, along with all the other experienced well-wishers. This site does help a person get through, doesn't it?

Mary Ellen

[gillespie]

Glad to hear from you. I will be thinking of you and praying for you and your family.

[Kitty]

HI All

Pooka - thank you for your kind wishes.

Mary Ellen - we had the MRI pretty much first test, about 2 months ago. Pre-op tomorrow and don't yet know about blood donation. I am glad you posted, am here if you need me. We all are. Our kids' surgery dates are all so close - Sidney 13th, Tahlia 18th and Danielle 22nd. We will support each other through this.

Stay in touch and let us know how you're going.

Take care,

Lisa

[WNCmom]

Lisa--

Sidney has had 2 MRIs over the last two years, but it has been over a year since his most recent one (which showed no change in a very small syrinx), and we all felt it would be a good idea to make a last check. He actually had lab work done last week, but there was a mix-up and one test didn't get requested, so he has to go again after Nov. 1 (sigh).

It's funny how relatively small things cause me to worry--one of my biggest worries right now is that I need to have a crown on one of my teeth and I'm scheduled to have the temporary done on Monday. I'm worried it will cause problems during the time we're in Philadelphia--it's a long way from home and we'll be there for 17 days since we will stay in Philly for several days post op to be sure all is going well. I've never had trouble with a temporary crown before, but now I'm obsessed, worried I might not be able to give Sidney my full attention. I think I'm going to go ahead with it, since that's what the dentist recommends.... I'm such a catastrophizer anyway, but I see I'm tending to focus on the small things. I'm feeling pretty solid about the surgery at the moment. I just want to be sure I'm able to be fully present. Of course my husband will be there...

We're now three weeks from the day. I'm sure it will go fast.

Mary Ellen

[Kitty]

Hi Mary Ellen,

I would go ahead and have the crown done, because at least your husband is there as you say. Is it a very long procedure? You need to take care of your needs too so if not having this done is something that will bother you, then best to get it off your chest now. I'm sure it will all turn out fine and you will be giving 150% to your son when he needs you.

Sorry to hear they forgot one of the tests. But sounds like they're back on schedule and have another date set. We had out pre-op tests (blood, urine, swabs, ECG) x-rays, paperwork, lung function test, etc., last week so we've gotten all those things out the way. Now we just have a neurology appt and final doctor (surgeon) appt left.

So like you say, not long to go now!!!! I am still okay at the moment, but thinking about it more and more, and I'd say i'll be on that emotional rollercoaster the week before.

Take care,
Lisa

[WNCmom]

Lisa--

I did decide to have the crown done on Monday, and I'm feeling okay about it. Today my big concern is keeping us all healthy. I'm feeling a little tight in the chest and slightly "off" ; I'm hoping it's just allergies as all the leaves are coming off the trees here in the western NC Smokies and we have just begun to fire up our woodstove a little, which dries out the house some. Sidney and my husband seem to be fine, but if one of us does get sick now we should have time to get well. In the meantime we are taking vitamin C, immune-boosting foods, drinking lots of water, etc.

I'm feeling the urge to clean--nesting instinct always kicks in before we go somewhere; I just want to have an orderly house when we return.

I also have this feeling that time will speed up even more as we get closer. Just over two weeks before we leave for Philadelphia (a scary thought!), since we have a pre-op clinic before he is admitted on Nov. 12. And in between, lots of things to do--it's just life!

Mary Ellen