[tri-med] Blood Vessels

OK - a question that probably cant be answered.
Is anyone aware of any "funkiness" with blood vessels in our kids, specifically 
T-18? 
Why am I asking? Because I think I want to give my t-shirt back!! Actually I 
think I want to give back the one for the human race :-)

The surgery debacle for Alex is not over apparently. Actually I don't think its 
even started, and yep that sigh you just heard originated here.

My "mummy gut" is still not sitting very happily about this surgery especially 
when they put it off for another week, (so we are scheduled for the 8th now - 
maybe). So I rang Alex's old surgeon for an opinion (he has moved to another 
state to take over head of pediatric cardiology there), Nanci, Melissa will be 
pleased because I could hear his eyes rolling over the phone :-)) 

This surgeon we havent seen since 1999 when he operated on Alex and I probably 
havent spoken to him in 6 or 7 years remembered us without any prompts. He 
still remains the only cardiac surgeon that I know who will willingly operate 
on our kids here - he just never gets the chance because we can't get past he 
cardiologists to get to the surgeon.

Anyway he wasn't impressed with the fact that the surgeon was going to operate 
without ever having introduced himself, wasnt surprised that I couldnt get 
cardiology to return a phone call (thats why he accepted the job interstate) 
and isnt at all happy with the recommendations and options that we have been 
given. He doesnt disagree that much of the problem is probably due to the T-18 
label.

One warning that I wasnt given was the risk of thrombosis. When placing a 
pacemaker in adults thrombosis is a risk but apparently its an even bigger risk 
with kids. And he agrees, we have no idea if Alex's blood vessels are "funky" 
that was considered in his equation when he placed the pacemaker where he did. 

Let me see if I can explain this - at the moment Alex's cardiac lead is loose 
in his body. The battery unit is under his ribs and the lead from that to his 
heart simply lays, looped, in his chest. Ten years ago this surgeon said that 
he did that for a good reason (he told me at the time). He said that he wanted 
as much room as possible for growth and time. If he threaded it through Alex's 
veins then there was a high chance that it would embed itself in the vein and 
ultimately when he needed the leads changed (they do break eventually or get 
too short due to growth) that they wouldnt be able to get it out without 
destroying the vein. It was placed where it is (in his chest) rather than the 
abdomen because he has a gastrostomy and because he wanted to give it as much 
protection as possible plus of course he wanted to keep it as warm as possible 
(close to core temperature) given that we were going to be asking it to work in 
lower than normal temperatures - something that Medtronic who make them could 
not guarantee its functioning in. It was an experiment - that worked.

Yesterday he explained that when you thread them through the veins, especially 
in kids, one of the risks you run is destroying the vein whilst threading and 
secondly you run a risk of them developing a clot. If that happens they would 
have problems with their arm, the worse case of course is that Alex could lose 
the use of the arm. To me, when you start talking about clots I also see the 
risk of a brain clot - and oldies know my views on that!! (bottom line, to me, 
for Alex, a stroke would be worse than death - loss of quality of life 
situation). 

Of course this risk is greater if Alex's blood vessels are "funky" and we have 
no idea if they are. So all evening I have been stewing on it and keep thinking 
about the funky blood vessels in his nose (Alex has profuse nose bleeds for no 
apparent reason - possibly from being on PAP for so long and I was stopped from 
using humidification for so long, but we really dont know it could be "funky" 
blood vessels)

His old surgeon gave me the name of two doctors who specialise in MRI's - one 
in Brisbane, and I called him but yep - he is away for a month. However I did 
speak to his fellow, a lovely HUMAN doctor who is also a mother. She didnt 
treat me like an idiot, and understood where I was coming from. Her answer was 
to do a 64 slice CT scan first before pushing for the MRI. (she didnt think we 
needed a 128 because there are no moving parts in his ears, we are trying to 
see the nerves) SHe also suggested that I speak to another ENT surgeon who does 
the implants and talk to him about the bare minimum as she pointed out that in 
Brisbane they don't even do an MRI for cochlear implants anymore, they do the 
64 slice CT's. 

Sooooo I put in a call to another ENT who has placed these implants in adults 
in Australia but I cant speak to him until tomorrow. Right now its 4.30am and I 
am still stewing.

My mummy gut is still not sitting comfortable with this new surgeon. He is 
probably a very good suregon, everyone says so even our old suregon, and 
although he treated me respectfully when I finally did meet him I am still not 
sure whether he was a tad condescending or if I was (and still am) just angry 
that he wasnt going to speak to me or even meet the master before he operated. 

His old surgeon would be happy operate again (and I trust him implicitly) 
however because he has only just taken up the position in Brisbane (a week ago) 
he is still setting up and wont start doing surgeries until May. I have no idea 
if Alex can wait till May as his pacemaker is in basic mode - meaning that its 
not giving us true readings about how much battery life is left.

If he did operate and replace the battery he wouldnt move the pacemaker. He 
disagrees with the other surgeon and said that providing you go slow and very 
carefully you can change the battery where it is 5 or 6 times without undue 
risk to the lung.Yes its always a risk but..........

Sooooo WHAT DO I DO????

As we all know statistics mean nought to us - we have already won the odds 
against lottery but....
If we do the MRI with leads in place there is a less than 2% risk of 
ventricular death. But this is certain death - its totally non recoverable from.

We have a 5 - 10% chance that the lead would break during the MRI and need 
replacing.

We can remove the pacemaker completely, do the MRI and replace it in a more 
accessible spot which gives 

a non quantified risk of thrombosis from placing the leads through his veins. 
Which at best could result in the loss if use of his left arm (Alex is left 
handed but uses right because the mosaicism has made his left side "funky" and 
its not as strong, as big or as developed as the right)

two major surgeries instead of one less major surgery.

Of course just changing the battery gives a risk of puncturing the lung - 
beatable but the risk of a major infection and of course damage to his lungs 
which I have worked so d&^% hard all his life to avoid scarring - its the one 
organ that WORKS and works well for him I dont want to risk them.

The 64 slice CT is a possibility, but our Kids Hospital doesnt have we one (we 
dont think) which means possibly going private to get it - that would cost big 
dollars - and I am probably talking about thousands. I dont have that right now 
- I could probably beg borrow and steal to get it but it would take time and I 
dont know if I have the time and cant find out.

Add into all that the fact that we KNOW this hospital as an unwritten policy 
not to treat kids with T-18 and everyone has to physically meet Alex before 
they agree to do anything I really have no idea who I can trust and how far I 
can trust them. (I actually have that unwritten policy in writing believe it or 
not) I am actually quite dubious that some of these doctors who were happy to 
do things a few weeks ago and who arent happy now have been "gotten to" - 
meaning pressured into no heroic measures, do the basic not the best. For 
example the ENT surgeon who was excited about the soundbridge implant is now 
saying forget it and wait for him to go totally deaf and just go for a cochlear 
implant later.

Given that Alex is already a one in a million kid (the odds of T-18 mosaicism) 
stats dont mean a great deal to me. And this isnt life or death, if it was the 
decision would be easy. 

Dr Carey is away so I cant ask him about blood vessels. I dont want to bug the 
doctors at Texas kids again. Nanci hasnt answered my SMS so I gather she is 
busy at work. (did you know you can send SMS's internationally - Nanci and I 
have been having fun but we may regret it when we get the phone bill :-))  

What does a mum do? Soooo can I give my t-shirt back?

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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