My explanation now that I'm more awake

iVillage Member
Registered: 09-06-2009
My explanation now that I'm more awake
4
Thu, 10-22-2009 - 8:28am

As everyone knows we went to Boston for a 2nd. opinion about 3 weeks ago. The dr. there wanted to do a bronchosophy to look down dh's throat & check it all out, yesterday was that appointment. he (dr) had asked for the records of when dh was in the hospital & we of course signed the release for them from all hospitals in the last yr. We were told dh had trachial malccia & could never not have a trach because his throat would collaspe & he would die. Trachial malaccia is when the throat muscles go slack & the damage can be seen, its usually caused from yrs. of having a trach, which dh had only had a trach for a few months at this time. I didn't question anything because there was some damage in his throat.


Yesterday I brought his extra trach w/me & told the nurse she could have it if they wanted to put the newer one back after they took out the old one which was going to be changed next week anyhow. She told me the dr. was thinking of a different trach & would be out to speak to us (ds & me). The dr. came out & told me if everything looked ok when he looked he was pulling the trach out & putting in a button to keep the trach hole open in his neck just in case a trach would be needed again. After about an hr. the nurse came out to expalin to us that the button was put in & 3 of the best drs. were in that room looking at dh's trachia, it was decided that he would use a bipap to blow off the CO2 he may or may not be retaining anymore & did I know his vent settings. I did & she needed to call the vent company to set up a bipap for last night w/them. In the meantime I told ds to call them & tell them to expect the call. He did & I know now the vent lady (J) was texting him while we were sitting waiting .


The dr. explained to us that he found no trachial malaccia at all. The throat may have been injured at one point due to all the trach changes being done in the hospital but that damge had been healed. That damage is very different looking from mallaccia. There is no need for a trach if the bipap can clear the CO2 which is why they put the button in as a precaution in case the bipap in dh's case doesn't work. The nurse told us that this dr. was expert in mallacia which I had already known because I did my research on him. He also called in an ENT during the procedure & already had another dr. in there w/him. The nurse told us we had 3 of the top drs. in this field in dh's procedure room. Dh told us that he was watching & saw everything they saw on a 40 in. flat screen sony. They were all in agreement after much scrutinizing his throat that his throat was fine & nothing was wrong, no damage anywhere therefore no need for the trach. NO Malaccia at all! We were also told after looking at many of dh's catscans from his time in the hospital that there is NO lung damage, no COPD

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Avatar for squeakyone
iVillage Member
Registered: 04-09-2003
Thu, 10-22-2009 - 11:34am

This sounds great and I think you found a great Dr in Boston. I would call their (Boston) office today and ask to talk to the nurse. Tell her what the vent company person said yesterday and ask if they can give you the name of a different place to deal with. You are doing the right thing in letting Nik stay home today but tell her that it's for one day until you can find a new vent company to deal with as what they said is not what the Dr's told you.

Avatar for coellis
iVillage Member
Registered: 03-26-2003
Thu, 10-22-2009 - 11:56am

Isn't it funny (not funny haha) how $$$ can rule the medical field?

 

iVillage Member
Registered: 09-06-2009
Thu, 10-22-2009 - 12:18pm

If I win the lottery I would look up there the medical sure is better. How can the drs. here have been so wrong? Now I'm being told if medicare won't pay for a bipap machine it will cost us $700.00 a month to rent out of our own pocket. Of course I called another company today & found out the cost out of our pocket would be $168.00 a month & to buy would be about 2,000. Our vent company wants 13,000 to buy it. Sounds like we're not the only ones they're taking advantage of.


As for my ds I can't figure out why a 50 yr. old woman would want to talk excessively to a 36 yr. old. Something strange is going on there & if I just mention her name or that company the hostility towards me is unbelievable. I told dh something isn't right there & if she & he have something going & it blows up in her face because she is married I won't be wanting to hear any of it. As far as dh's medical she needs to speak to us & leave ds out of it unless something so important comes up &she can't get us & calls him.


I smekk a rat.

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iVillage Member
Registered: 02-28-2007
Fri, 10-23-2009 - 1:52pm

I know your son has been most helpful over the course of events this past year, and I know he's gotten a bit irritable with your boxed items in the basement, etc.


Kathy