Bad News

[Kitty]

Hi All,
My daughter Tahlia who is due to have surgery in just under 3 weeks has had a few setbacks. She had her appt with the anaesthetist today and discussed the results of some of her tests. It looks like she has a UTI, which they are concerned about and this appears to be a recurring problem. She also had problem with blood co-agulation and have re-done her bloods and will need an appt with haematology. She also had less than a third lung capacity and has been referred to a respiratory physician. They found she has some mild asthma and we will not put her on some puffers for that to ensure that she is functioning at best lung capacity as possible. They're also wanting to have an echocardiogram to ensure that the scoli hasn't impact on her heart the way it has her lungs and breathing. They also want to have a look at her kidneys.

So after all that, my anaesthetist is going to sit with the surgeon and review their options. She (the anaesthetist) indicated the surgery may be cancelled or the surgeon may elect not to do an anterior release as planned because of the risks involved when collapsing the lung. I have another review with the anaesthetist in 2 weeks, so i'll see what happens then.

I am an absolute mess. I broke down in the docs office today and thought this was going to be the last of our appts before the surgery and then all these things happen. THese next 2 weeks are going to be an emotinal roller coaster. I have such a headache, my head hurts and my eyes are red from crying. My daughter has been telling me off becasue she worries when she sees me cry and then doesn't want to cry herself, because she knows she will start to worry and doesn't want to get upset. So i'm trying to keep it all together, but it's so hard.

Anyway, just wanted to keep you all up to date.

LIsa.

[WNCmom]

Lisa--

I'm so sorry you've had these unpleasant surprises. It's hard enough keeping it together right before surgery without hearing about new, previously unknown health issues (which are alarming by themselves) that may well hold up the process.

Because my own son Sidney is scheduled for fusion in two weeks, I don't have any experience with this--I wish I could say something that would help. I'm sure there are others here who are so much more knowledgable than I am. Perhaps there is one small positive bit to this--at least you know Tahlia won't be going into the surgery with a health situation that will put her in greater danger. You know your surgical team won't allow that.

Thanks so much for keeping us up to date. Hearing from you and Catherine is helping ME keep it together. Hang in there, and keep that news coming--and remember to breathe.

Mary Ellen

[luce]

One step at a time

Kitty,
I can only imagine what you might be going through at this time. My daughter had surgery July 2008 and the weeks prior to surgery were the worst.
I would like to suggest that you take one step at a time. Address each issue fully and until you are convenienced of the answers, dont move on. Ask questions (write them down before you go to an appt). Do some research on line but be careful what web sites you take information from. I believe that in having "your" questions answered, you will start to feel more confident about what is to come and also what to expect. I will say that once surgery is over and you see your daughter, you will feel the biggest blessing of all. I will keep yall in my thoughts and prayers.

[ARN010]

Hang in There

Hang in there. I was quite unwell before the surgery even without setbacks. Do something for yourself like a massage. Do your best not to freak out your daughter. I tried to have most of my feelings away from home so I cried at my desk at work a lot. Most of all, do what they say...if they cancel it's for the best. My daughter had a slight cold prior to surgery and the surgeon left it up to the anesthesiologist the morning of surgery...they went ahead but there was a partial lung collapse and we had to really do the breathing exercises. If they're cautious it's for good reason. None of this is predictive of a bad outcome.....it is very rare for anything catastrophic to occur. Call me if you just want to cry and talk....650-245-2781. Take good care of you today.

[gillespie]

Oh Lisa
I am so sorry to hear about these new events I can't imagine this is such a stressful time to begin with. I feel so bad for you, we have not had any problems as of yet (knock on wood) and I have been a mess. The most important thing is that she is at her best for surgery. Danielle and I have had our moments over the last week as well just anxiety and we make sure to make up and we both know why so that helps a bit. I will be thinking of you and praying that everything works it self out. Stay strong
Cath

[Karen Ocker]

It looks like they are taking excellent care of your child in order to have her in excellent condition for this demanding, necessary surgery.
UTI- urinary tract infection is not the end of the world it's treated with antibiotics.
The child's lung capacity has to be strong enough to withstand anesthesia. Getting them in optimum condition is important. Being checked by the hematologist will determine if she will clot properly during surgery. If a clotting factor is deficient then that can be treated also.

[Kitty]

Hi,

Thanks to all for replying and for all your kind words and support. I am feeling better (apart from the flu I got recently) and am holding hope that whatever they find they'll be able to address it and that they'll make the right decisions for my daughter.

We have several appts next week with various specialists - urology, haematology, respiratory, an ECG, and of course the scoli appt with surgeon. Plus next week back to the anaesthetist. I am so sick of doctor's appts. IT was supposed to be the last one last week, but now we've got all these others this coming week. So I'm a little bit nervous, but confident that they can treat whatever it is and look after her when she has her operation, even if she may need a little bit of extra care.

Mary Ellen - you're son's surgery is on the 14th right? How are you both coping? Are you getting ready for it?

Thanks all,
Lisa

[WNCmom]

Lisa--

I really appreciate your asking about us, with all you're going through. You sound like you're in a good place now.

Sidney is 13. His surgery is Nov 13, less than 2 weeks away. He has just one more set of lab tests to do locally (there was a mix-up and something was left out on the first order, so he has to have it done again next week--sigh) before we leave on Nov 10 for Shriners in Philadelphia (we are in the NC Smokies). He gave blood for himself a few weeks ago, as did his father and I, since we are all the same blood type.

He is doing well. He doesn't talk about it much. I get the sense he is trying not to think about it a lot--probably a good thing. We are doing our best to keep all of us healthy for the next two weeks.

I'm holding on pretty well and surprisingly, sleeping fine. I have many worries, but two that keep coming back at the moment are: 1) hoping his curve hasn't progressed so much (it has gotten visibly worse since the summer, when it was 57T) that the surgeon won't be able to get as good a correction, and 2) worrying that I won't be adequate to the situation--that it will be so hard to see him so much pain in recovery. I know it's not going to be pretty. No doubt as we get closer I'll just be worrying much more about him coming through the surgery okay. A week ago I was feeling overwhelmed and numb.

This is a child who has never had an antibiotic. The strongest medicine he's ever had is childrens tylenol, and I remember the two doses I gave him. He only had one earache, ever. He's always been so totally healthy, and he's my only child. So I don't have much experience with this kind of event. Thanks to this forum (I can't IMAGINE where I'd be without it), I have a lot of information, but I still don't know if I'm mentally prepared. I myself have had 2 abdominal surgeries, not counting the C-section with Sidney, but it's much harder having him go through it.

My husband will be coming with us, of course. We are self-employed and have the flexibility to both be away for two weeks-plus (we will stay in Philadelphia for a week after Sidney is discharged because we live so far away--this was our choice). He and I are hoping to tag-team staying nights in the hospital with Sidney. We stayed in a Ronald McDonald House in Philly when we went for the first consult and thought it was wonderful, so we're on the list and are hoping to get a room there.

Life is very busy with things to finish up--mostly business items--before we leave. When we get to Philly we'll have a clinic with Dr. Cahill on Nov. 11, plus a final MRI to make sure the tiny syrinx in his spinal cord that has been unchanged for two years is still the same. Sidney will be admitted on Nov. 12. Surgery will begin early Nov. 13.

I guess that's all the news....I want to thank all of you for your willingness to share your experiences and answer questions. My situation would feel totally different if I didn't have your collective knowledge at my fingertips. I worked so hard to keep Sidney from ending up in this place with fusion, but since we are here, I feel as positive about it as I can, and you all are in large part responsible for that. As always, thanks for being there. This has been a long post!

Mary Ellen
(someday I'm going to do a signature!)

[Pooka1]

Hi Lisa,

I'm sorry you have to deal with all these extras on top of surgery.

My daughter had some "incidental" findings on her MRI which had to be chased down with new appointments with new doctors. It felt almost like the last straw on top the hard work we were doing to mentally prepare for the surgery.

But I soon came around to being grateful these other things were found... one issue was a cyst in her kidney and in her throat... we actually have to watch the kidney one in the future. I suspect it's all in the constellation of issues with whatever connective tissue condition she might have though we don't yet have a diagnosis. It's better knowing that than not knowing it though I wish we didn't learn it in the immediate run-up to surgery!

Anyway, they told me it's not unusual to have some incidental finding come up in the pre-op testing. It's good your surgeon is on top of things.

I know you will stay strong and focused.

Good luck to Tahlia and your family.

sharon

[Pooka1]

(snip)I'm holding on pretty well and surprisingly, sleeping fine. I have many worries, but two that keep coming back at the moment are: 1) hoping his curve hasn't progressed so much (it has gotten visibly worse since the summer, when it was 57T) that the surgeon won't be able to get as good a correction, (snip)

Mary Ellen,

I have an article somewhere about how the success of the surgery in terms of pain levels (or lack of pain) later in life was similar between those corrected a lot versus a little in terms of straightness. I wrote about this in an earlier post. If I'm understanding this article correctly, corrections to near straightness like my daughter had appear to be grandstanding. That is, a smaller correction would have the same long-term outcome in terms of pain (or lack of it) with presumably slightly less risk.

I also was left with questions after reading that about whether leaving a small curve might be better than bringing the spine back to near straightness in terms of long-term disc health above and below the fused area. I can imagine that it might be easier on the discs if a small curve is left. I have NO idea if this is even an issue.

So my bottom line is I will not be worried if my other daughter doesn't get a correction to near straightness if she needs fusion.

I might be misunderstanding the article. Maybe there is no more risk going that last bit to near straightness. I have not done 1/100 of the reading I should have done to have an adequate handle on this situation by my standards.

Good luck to Sidney, you and your husband. You will all come through with flying colors!

sharon

[WNCmom]

Thanks for that input, Sharon. Helps put things in perspective.

Mary Ellen

[pmsmom]

Dear Lisa,

I read your post a few days ago and I do feel for you. But I have to say that I agree with the others that it's great that the doctors are finding things now they can address so that your child is as healthy as can be before the surgery.
That is a real blessing!

And Mary Ellen, my thoughts are with you, too. I understand about the medications as my dd is highly allergic to medications and we do what we can to avoid having to give them to her. I look at her and wonder how she will do with all of the meds she will have thrown at her and then I realize that everything will work out and to take one day at a time. We are actually working on the swallowing of the pills issue and it is coming along. She is now able to swallow those mini m & m's. Next it's on to tic-tacs.

Also to Mary Ellen, I see where you are having your child's surgery and where you live. How do you plan to get back and forth? How many hours will your trip be? Ours will eventually be 3 (4 or more if dh drives home slowly). Looking for suggestions.

[WNCmom]

pmsmom--

We will fly both ways. It's a 14 hour drive from here to Philly. Besides the fact that we wanted to stay close in case anything came up immediately after discharge, we thought another week to heal before getting on a plane (and having to change planes) for a total 3.5 hours of flying would be easier for Sidney. From the closest airport on our end, we have an additional 1.5 hour drive to get home. We live far out and are used to that, but when it comes to hospitals, we really have to go far to get anywhere.

I'd also be interested to hear how folks have dealt with drives/flights post-op.

Mary Ellen

[pmsmom]

pmsmom--

We will fly both ways. It's a 14 hour drive from here to Philly. Besides the fact that we wanted to stay close in case anything came up immediately after discharge, we thought another week to heal before getting on a plane (and having to change planes) for a total 3.5 hours of flying would be easier for Sidney. From the closest airport on our end, we have an additional 1.5 hour drive to get home. We live far out and are used to that, but when it comes to hospitals, we really have to go far to get anywhere.

I'd also be interested to hear how folks have dealt with drives/flights post-op.

Mary Ellen

Makes sense to me about the flying and staying nearby. I had wondered--I know some people have to fly b/c of the distance with the surgeon they chose. But we do what we have to!

We used to live in the country but moved closer towards town. Even though we have hospitals that are closer, we chose a surgeon who's 3 hrs. away from us. We will take it slowly coming home--of course, at least while we're in DC, I doubt the traffic will be moving very fast.