5 Weeks To Go!!

[Kitty]

Hi All,

My daughter, Tahlia has just 5 weeks till her surgery now and we are currently about to go through all the pre-op assessments and tests. I am nervous but also looking forward to getting to the other side and seeing my daughter with a straighter back, so kind of have mixed feelings at the moment.

She seems to be coming down with something at the moment though, maybe just a cold or the flu even, so I'm hoping that she'll recover from that soon, so we won't have to reschedule. I couldn't bear to start the waiting period all over again. She has a lung function test in 3 days so I don't know how that will go if she's got a cold.

Thanks again to all who have replied to my messages so far - I only wish I had come across this site sooner. The support from people has been amazing and as I don't have people in my own life who understand what this is like, it's been a much-needed lifeline that I can't speak more highly of.

*HUGS* to all

Lisa

[gillespie]

Lisa I am right there with you. My daughters surgery is Nov 24 and I to am relieve it will be over soon but also scared. I thought my daughter was getting a cold about 4 days before the pulmunary function test but it really did not develop in to anything and she did fine on the test. I to was worried about having to go back on the list I think that was the worst thing to hang over your head not knowing when. I will be thinking of you and your baby. Hang in there
Catherine

[Kitty]

Hi Catherine,

Tahlia's gotten worse. She hasn't slept the last couple of nights, has chest pains, is not eating and feels like throwing up. Plus she's got sinus congestion and constnatly sneezing, so i think she's coming down with the flu. I rang the hospital today and they said to call the afternoon before the test (that is, tomorrow) and see how she is then. Otherwise we'll have to reschedule. They said this test has to be done before her preop clinic which is only next week, so not a lot of time.

Uggh!! I'm irritated, but it'll be okay I"m sure.

We will support each other through this, I'm sure. My daughter is only a year older than yours, so I;ll be thinking of you also.

*hugs*
Lisa

[gillespie]

Hi Lisa
So how is your daughter? Did she end up having to rebook. I hope not for everyones sake. We are going this week to get the first eop shots to boost her red blood cells for surgery and then Tues to see the Dr. and make sure everything is a go. We start blood donation on the 28th. Just can't wait for Dec then this will be all over with. I have been thinking of you and your daughter. Hope all is well my prayers are with you
Catherine

[Kitty]

Hi Catherine,

Yes we had to reschedule and the new appt is next Wednesday then pre-op on Friday. Tahlia is getting better every day, still coughing but not as bad as she was last week.

What is eop tests?? Our doctor hasn't said anything to us about blood donation, so maybe this is something we'll bring up on Friday. I wonder if this is something that they'll do then.

Please let me know how your appt goes Tuesday and i'll keep you posted too.

I know what you mean about not being able to wait till December - I feel that way too. The worst of it will be over and we'll be looking back on our worries with a hugh relief and glad to be moving forward.

Take care,

Lisa

[gillespie]

Hi Lisa
Epo injections are to boost the red blood cells in order to avoid blood tranfusions. We are going to hold off until we see if Danielle can donate her own blood. We go next tuesday for the first donation. As well I am a match for her so if she can not donate I will donate for her. We do not want to have donor (stranger) blood if she needs a tranfusion as we all know there are some risk involved with that. Some kids do not need blood as the cell saver machine that they use during surgery cleans their own blood and sends it back into their system. I would definatly ask your Dr. about blood donation. I am begining to feel overwhelmed with all of this as I am sure you are but one day at a time and we will get through. Thinking of you
Catherine

[txmarinemom]

Banked blood is SAFE.

... We do not want to have donor (stranger) blood if she needs a tranfusion as we all know there are some risk involved with that. ...

Catherine,

No ... we don't "all know" that, and I can't let this statement slide.

I don't know about the blood supply in Canada, but the US stocks of "stranger blood" are as trustworthy as having a friend or relative donate for you or your child. The risk of banked blood is inaccurately overrated.

Donors are screened *thoroughly*, and so are the blood or blood components they give.

I donated one autologous pint and thought "Pfffbbbbt. If I need more, bank's fine.". Ended up I didn't even *really* need mine, but my counts were slightly low at 2 days post-op, so I made them run it in. The thought of it getting tossed really bugged me (autologous donations are NOT screened fully, and cannot go into the bank supply). I donate regularly anyway (every 8-10 weeks - as do both my kids), and have the utmost confidence in the blood bank supplies.

Now if I can just convince the Nat'l Marrow registry to let me stay on ... scoli surgery makes you ineligible, and no one can give me a reason that satisfies me OR my surgeon.

Regards,
Pam

[Kitty]

Hi Catherine,
Thanks for into. Please know that you are not alone and that I too, am thinking of you. We are going through this together, albeit half a world apart.

Pam, thanks for clarification - I don't know where Tahlia stands with the blood donation thing, but I figure if I can come to terms with donor bone, then I can handle donor blood. This isn't a concern for me. In fact, I have always wanted to donate myself but as i am on meds, i am unable to. Good on you for donating!!

CHeers,
Lisa

[gillespie]

Just to clarify***. I was not at all slamming "blood donation". I do believe it is a gift of life and if it was not for donors my husband would not be here today, He was hospitalized with a rare disease and hemmoraged into his lungs he received 10 units of donor blood as well as 5 treatments of plasmapherisis and without he would have without a doubt died. I know it is screened, but when he required blood I also had to sign a waiver to *release the hospital and Canadian Blood service from any liability from effects of blood transfusions. It is as safe as it can be but nothing is 100 percent and I feel better knowing that my childs own blood is going to be used if needed. I also am not a Dr. and do not advise just give my personal opinion and my feelings toward care a treatment of my child.
Catherine

[gillespie]

Hi Lisa
Our appointment with the surgeon went good today her pulmonary function test was fine. We are undecided on the EPO as not really necessary if she is donating blood. The surgeon advised us that when you donate blood it stimulates your bone marrow and signifigantly reduces the need for tranfusions. So not only will she have her own blood but because of donating she may not even need it. We also did a tour of the hospital today to see where we will be spending the week, waiting rooms, etc. Thanks again

[Jacque's Mom]

Stimulates your bone marrow?

"The surgeon advised us that when you donate blood it stimulates your bone marrow and signifigantly reduces the need for tranfusions"

Catherine - Very interesting as I never heard of that. I also agree with you that nothing is ever 100%, risks are always involved, and I would certainly do exactly as you are doing for your child. I wish all of you the best. Regards, Lynn

[gillespie]

Thanks for the support I need all I can get right now. It if very difficult to make these kind of decisions for your child. I am just doing the best I can for her right now.

[gillespie]

Hi Lisa
Did your daughter have her pulmonary function test today. I had a rough time last night could not get the wheels to stop turning not much sleep. I think maybe our hospital tour really brought the reality that this is happening and soon. I have such anxiety when it comes to spending anytime in hospitals. Guess I better get over that! Hope all is well.

[txmarinemom]

... Thanks for the support I need all I can get right now. It if very difficult to make these kind of decisions for your child. I am just doing the best I can for her right now.

Catherine,

I'm sure you're doing what is best for her, and no ... the decisions aren't easy.

Apologies for reading more into what you wrote than was intended. There are far too many people here in the States who absolutely refuse transfusions (those outside religious reasons) because they're still under the misconception the banked supply is loosely screened and exceedingly risky. It's always frustrating when I hear someone say that, and that was definitely the mistaken filter your post went through before it hit my brain.

I have heard the body kicks into overdrive after donation, but I've always wondered why (and you'll see it pretty frequently across these boards) people need the exact number of pints they donate. Would you need 3 pints if you hadn't pumped OUT three pints in a 20 day window before surgery? (BTW, I say 20 days because my surgeon goes with "no more than 30 days prior, no less than 10 days prior" - although I *think* it can be 45 days if they freeze it.)

Someone mentioned Cell Saver, and it is indeed good stuff. Hopefully she won't need a transfusion at all: Like I said, I didn't ~really (and yes, they recycled during surgery with me) ... I just reclaimed it because I already had an IV in place, my counts were ~slightly low, and I couldn't stand the thought of that pint being tossed.

If Danielle is able to donate for herself (and even if not), here are some things she (and her donors) can do to boost hemoglobin ...

http://www.scoliosis.org/forum/showt...ght=hemoglobin

Kitty mentioned donor bone/allograft (I had it in addition to BMP): What are they planning to use for grafting with Danielle?

I can only imagine how trying it is when your child is the patient vs. you, but really ... it's going to be fine. My suspicion is you'll be pleasantly surprised how quickly and easily she bounces back.

Best regards,
Pam

[gillespie]

Hi Pam
No need to apologize. I would never want anyone to refuse blood tranfusion based on fear. I don't really know why people tend to need what they have donated and I am not so sure that it is a need but like in you case the blood was there and even though it would not have hurt you not to have it, if your levels were low why not. Our blood services allows up to 45 days for donation.
I wish I could take this one for her but I can't and I know in the long run we are doing the right thing, as well we have also made sure that Danielle has been a part of every decision in this process. This is not just a cosmetic thing for her. She is very athletic and she is in pain everyday and does not want to live in pain. As well she knows that it will most likely limit her ability to do the sports that she loves so much. She has been doing Physio therapy for 6 months to prepare for surgery and it has helped some what with the pain but the goal is to prepare those muscles for recovery. Thanks for your knowledge I have read many of your responses and post and you obviously are very experienced with this process and that is very important for people going through this, thats why we are here so thanks for that