Ken/Anne

[Guest guest]

Hi Ken,

the original physician that put him on the vent was an intensivist. now

is being managed by a different doc and the management is the most thorough

ever and very good. We are in search for a pulmonologist to add to the team,

and I have my eye on one. However the physician who is doing the present

vent management is working very closely with me and understands as well as

supports and agrees with our ventilation decisions at this point. It is the

lack of negative pressure vents in this country that is the problem as well

as having to seek an external battery. I'm sure the battery issues are

solvable, I just need to do my homework and find out the best options; one of

the DME RT's is doing the same.

But I do have serious concerns regarding mode of ventilation. Europe seems

to be the place to live to obtain negative pressure ventilation, not the US.

To exasperate me further, I just discovered last night that the RT is wrong.

's vent is not due to be sent to London in approximately 4 months to have

the bellows changed, it should have been done over 1000 hours of use ago!!!

So I am a little more unnerved knowing what we are facing having only one

vent presently and with his no spontaneous attempts to breathe in sleep

state. You know, I still keep hoping it is just a " spell " . And there is

sometimes an accumulative effect in the amount of stress in trying to manage

it all. Last night we ran our of 02 because they delivered a day early last

week, and now today I have to follow up on their mistake regarding

maintenance.

As far as other means of ventilation, in order to remain non invasive, well

this is all we can do. BI PAP is not an option because he needs something to

actually move the chest wall. If you know of something I am not aware of,

please advise.

Anne,

I hear ya on the docs. I get it all around too. First there were the

cardiologist that one of 's docs declares didn't want to give him a

chance and refused to do his pacemaker. This physician went over their heads

and contacted the cardio-thoraxic surgeon and it was done. Because of this

my son is still alive. His heart rate was so bad he would become bradycardic

with bowel movements, then stop breathing secondary to passing out and become

cyanotic. It was awful. When the pacer was placed, there was a lot of

confusion as the intensivist was trying to be managing physician, but

was admitted under the surgeon. Then the surgeon discovered things about is

heart he had never seen before and got him all unnerved, as well as the

initial surgery was not successful because of the abnormalities to his heart

muscle. ON a side thought, when he had bilateral inquinal hernia surgery,

the surgeon also noted something unusual about his stomach muscles that she

had never seen before. Regarding the pacer placement, what a mess-another

night mare story and doc egos well in the way. However, we now have an

excellent cardiologist I am happy to say.

And just recently, 's RT for the vent (who soon will be different from

his RT for the other respiratory equipment) told me of a discussion between

him and another RT. More or less, the " other " RT said that he didn't

understand why we didn't trach , despite that I had explained about his

autonomic instability being severe ( had what was presumed to be a stroke

event after his last surgery as was, in addition to extreme instability and

crashing upon extubation; he gets worse with every single surgery). the first

RT who has had in the PICU from less of a year of age and into home care

at this point told him that he could come over to the house and talk to me if

he wished, but that I would " chew him up and spit him back out " !! It bothers

me that they are ALL talking about us behind our backs! Reality is, just

because it is the simplest way to go in regard to what is US available does

not mean it is in 's best interest. I even had one doc to say he

couldn't believe the way I have to deal with his emergencies and that

traching would take that off of me. That is the stupidest thing I ever head

of cause then I have to get up and down all night long suctioning him!!!

Either way we go, there is going to be all night care required, but the way

we are doing it requires no risky surgeries and none of the trach related

type issues.

OH well, sorry for the rant. Just wanted to let you know Anne, go for what

is right for your boys; and you aren't alone in fighting for what you know to

be in their best interest. I'm very sorry for all you are dealing with. I

know your boys are very sick and I wish there was an easier way to care for

their needs. I thank God that my children don't have the bone marrow issues.

I wish you much success with physician help and guidance. And if the surgeon

is the best guy for the job, go for it!

Cheri, going to call the DME and get this ventilator shipped to London!

>

>Who is the pulmonary doc helping you out with the vent. they should be

> your best resource to assist with the ventilator issues you are now

> facing. I can't imagine (though assumptions are always dangerous)

> that a pulmonary doc (or whoever ordered the vent to begin with) will

> let you bag for that long. there have to be some other alternatives

> pending the repair/replacement of your vent even if its not a

> negative pressure vent.