So glad I found you guys!

[Elisa]

Got the pre-op package in the mail and just finished reading it. I need to take my son for some blood work as well as a nose swab for MRSA after Feb. 21st. Also received a list of nearby hotels with prices and info so that's good.

I am confused about something. In the surgery details part of the letter (handwritten by admissions) that my son will have: a posterior release, halo application, traction and then posterior spinal fusion with instruments.

I could have sworn when we were at Shriners they said he was going to have an 'anterior release' first not a posterior release. Does this sound right or do you think she wrote it wrong. Is it possible that he could have a posterior release first and then a second posterior surgery? Has anyone heard of this? I know it was a lot to take in that day, especially the whole halo thing but I was sure Dr. K pointed to his front/side when he was describing the first surgery but honestly I can't be sure now. Too much information to take in all at once and I was stuck on the halo ordeal at that time.

[Elisa]

So no one here is familiar with a 'posterior release and then posterior fusion' and I haven't been able to find anything about it by searching the Net. I can find tonnes of stuff about 'anterior release' and then posterior fusion so maybe the admissions wrote it down wrong or maybe Dr. K has something unusual planned for my son. Either way I guess I'll find out when we get there. 1 month 5 days to go.

[leahdragonfly]

Hi Elisa,

I'd be willing to bet it's an anterior release first. That would be an easy mistake for admissions to make. You could always call and leave a message for Kelly Alexander to clarify.


Gayle

[Elisa]

Gayle, I'm willing to bet that it's an anterior release also. I remember Dr. K pointing to the front/side when he as talking about the first surgery to "loosen up the spine". He was a bit difficult to understand even though his English was fluent, he had an Eastern European accent (Czechoslovakian) and spoke quietly. I'm not going to call Kelly A again and will wait until we're down there again next month for ALL the details. It was so much to take in all at once and again, the halo-bomb threw me for a giant loop and my mind went blank.

I was so shocked about the halo-traction procedure that I immediately popped a full Ativan (1mg.) when he left the room and by the time we got back to our hotel room I could hardly make it into my bed. Elias said I slept for at least two hours. Seemed like just minutes to me. Then the phone rang and woke me up and it was the coordinator from Shriners giving me all kinds of information about the pulmonary test and the MRI scheduled for the next day and I couldn't find a pen in the hotel room so I wrote all the info down with a lip liner. How can a hotel 'not' have a pen in the room!?

[Elisa]

Now I am curious about my son's pulmonary results but won't call the hospital b/c we'll be down there in four weeks anyway but he seems so tired lately and even his math teacher said he puts his head down on his desk like he's exhausted. She had no idea he had severe scoliosis until I told her; he hides it well. Also, he seems to have dark circles under his eyes. I actually went to brush something off his face but there wasn't anything there, just a black circle. Today I asked him how he was and he said he was okay but was tired. Not hungry or sore like he usually is so that was different.

Does anyone know anything about these breathing tests they do? What's a normal score? I know nothing about lungs but want/need to learn b/c with a 110* curve, you'd think it might cause some fatigue all of a sudden?

Okay, now I'm thinking it will be exactly two months between being diagnosed and first surgery... what if his spine is even more? I suppose it doesn't matter much at this point but still curious to see what it ends up at.

[hdugger]

I know a little about the test because I have asthma. The tests they give you at the hospital are much more involved - I had to sit in a pressurized chamber and go through all kinds of different breathing tests - but there's a simple test you can pick up at drugstore that gives you one measure of breathing called the peak flow. The peak flow measures the force of your breath out (while the other tests measure the volume of air in your lungs).

The peak flow meter is just a little hand-held thing - here's the description http://en.wikipedia.org/wiki/Peak_expiratory_flow - but it mostly gives me a number that's pretty close to the one measured at the hospital.

I don't know for scoliosis, though, if peak flow is an interesting measure, or if the volume tests are the ones that matter. I actually have a little, more expensive (but not *that* expensive) device which measures both the peak flow and volume. (Here it is at Amazon - http://www.amazon.com/gp/product/B000BH8TUA) For either one of them, you have to correct the "expected value" chart for what his height would actually be. I know there's a way to calculate true height by measuring the arm span, but I'm not sure what the calculation is.

[Pooka1]

Important new development in chinchillas...

http://icanhascheezburger.com/2011/0...lla-belly-rub/

[Elisa]

hdugger, thanks, I'll look at that link in a few minutes. Kelly A did call me last Friday but of course I missed the call and she left a message that I could call her back on Monday if I wanted to. I'm pretty sure she was returning my call about wanting the results of the pulmonary test but I didn't bother calling back again b/c I figured we'd find out in a few weeks when we're down there anyway. It also means that I have to carry my cell phone around work/everywhere and sometimes it's just awkward.

Later on last night I was listening to my son talk to his friends on his computer/mic and he was laughing hysterically and talking nonstop so he definitely wasn't tired or winded. I think he's feeling tired right when he comes home from school as it's a fairly long day and he does walk to and from as well with his pack sack, it's only about six blocks or so but by 3:00 pm he's pooped. At least he seems to get his energy back once he relaxes in his comfy chair with his pj bottoms, tea, snack and of course a huge dinner. The boy has hollow legs!

Pooka, that is SO cute. None of my chinchillas would let me hold them like that and scratch their belly b/c mine are all lil stinkers with attitude. I have a lot of work to do in my chin room as I've been getting behind and it doesn't take much slacking off b/c they are very messy. Maybe later on today when I'm down cleaning up their room I'll snap a pic or two so you guys can see how big their cages are and how much work it is keeping up to them.

[Elisa]

Both my son and I had an appointment this morning with our GP and it went really well. Updated him all about BC Children's complete disappearance and Shriners amazing ability to help us in this situation. He had a look at my son's back, felt around his spine etc. and was disappointed that he was not even looked at up here in BC but was very glad to hear we're heading to Portland for care and wished us both well. I had no trouble getting those extra anti-anxiety meds that I asked for and there's no way I'm going to use them all but he didn't want me running out while down in the US.

Then I took my son for blood work, lunch and to get a super short haircut so while he has his halo on it will be much easier to care for.

Results of blood work and nose swab (MRSA) should be back early next week and I will fax them myself to make sure it actually gets done.

Snapped a pic of my son which is very difficult b/c he is extremely camera shy but I think it turned out pretty good. If he was looking up a little higher you'd see both his dimples on his cheeks.

The boy lives in PJ bottoms. It's the first thing he does when he walks in the door from school. Must buy more as he's growing out of the ones he has.

[Pooka1]

Beautiful child!

Spiny Mouse, your son looks like such a great kid!

You guys are going to get through this and get on with your life.

[Elisa]

Thanks Pooka, I think he's a beautiful child too but I might be a bit bias, lol.

Everyone loves Elias: sister, brother, aunts, grandparents, teachers etc. There's nothing to dislike about him and honestly I do not ever recall him even having a temper tantrum or bad word. It's too bad that his back got so wonky and now he has to go through all of this but he is ready to go and get it dealt with and will be a "pro".

Edit: I WISH I had his eyebrows!!

[mariaf]

Beautiful, indeed! And those baby blue eyes!! Sounds like a beautiful person both inside and out. Thanks so much for sharing - it's always nice to put a face with a name.

[Lorraine 1966]

Hi Elisa, I have been following your progress and it was so lovely to see your beautiful sons smile, he and you dear are going to be fine. I realize it will not be easy for either of you, but what worthwhile isn't. He is going to feel so much better and will be able to get on with his life where nothing will be impossible.

As you can see I had the operation a long, long time ago and went on and had and still am having a wonderful life, besides for a few setbacks only as explained in my signature. My son has just had a double kidney, pancreas transplant he is 35 and after 20 years because of the pancreas bit he is no longer a diabetic. Eliza there were times when I thought I would go just crazy with the stress of it, but everything so far has turned out just wonderfully and I know it will for you all as well.

I have told you this only because I just wanted to encourage you and say just keep positive and imagine him when this is over with that beautiful smile on his face, all will be so, so good.

I truly am so glad you have shared this with us and please keep doing so, and you will have from me nothing but positive thoughts coming over to you.

Regards
Lorraine.

[Pooka1]

Excellent post Lorraine. You always hit the perfect note.

Great news about your son! Congratulations. These surgeons are amazing.

[Elisa]

Lorraine, your comment made me tear up. Thank you so much for such a lovely and encouraging post and I will remember everything you said. You all have been so very helpful to me, a total stranger to you but I never felt like stranger from the first day I posted here and I am truly grateful and oh so glad I found you guys! =D