Monday, July 9, 2007

ENT update....

That I forgot to do.....ah yes it is true, you really do loose brain cells with every child you have. After four, mine are gone. Reason number 1,465 why we are not having any more kiddos. But I won't get into that subject.....

We got up there late because it was morning rush hour traffic. We got stuck in traffic for four different accidents. I call when I am just about there to let them know I am running a few minutes behind. I get some snobby girl saying, "Well you better hurry because if you are more than 15 min late we will have to reschedule you."

Yeah right: over my dead body. I did not just drive 95 miles to see a doctor who I would rather NOT be seeing for nothing. I tell her that I don't care if I have to sit in the office all day, they WILL see us. After all I did leave my house at 6:45 am for a 9:00 am appointment. I gave myself plenty of time.

I get in there, and the nurse asks me if I brought in the sleep study results. What? Nobody ever told me that I needed to take those in. So they make me call the pulmonologist to have them fax over the results that the ENT was supposed to have had over 3 weeks ago.

Then the Dr. comes in and starts telling me WHEN we take out the tonsils and adenoids that Rhett will have to be in the PICU for an unknown amount of time until he recovers.

Um wait a minute...I don't believe I recall ever saying that I was ready for those tonsils to come out. I start to go on about the Tracheomalacia, and the Subglottic Stenosis, and tell him that rather than risking Rhett's airway collapsing I would rather try CPAP.

He looks at me like he is just realizing that I am actually sitting in the room with him, and he says, "But people come to me to avoid CPAP." Then I go on to tell him about all of the traumatic experiences that we have had, and he tells me "Well my T&A's very rarely come with complications. Just the fact that your son has Down Syndrome is enough for me to want to take the tonsils and adenoids out."

Ok, well then, would he want me to come in and have open heart surgery just because I am a woman? There is no difference! I ask him if he can guarantee that it will work, and he says no. There is only a 70% chance of it working. Then he says that he knows all about "mom's like me" who are very educated about their children's conditions. But he can guarantee that I will be back in his office in a month begging him to do the T&A.

So he basically "humors" me and gives me the CPAP machine to "try out." So now I am more determined than ever to use it, and get Rhett used to it. It never ceases to amaze me how some doctors put children with Down Syndrome in to these little cookie cutter molds where they categorize them as all the same.

There is a chance that Rhett will outgrow his upper airway issues. So all hope is not lost if we don't do the T&A.

We go in on the 17th for a sedated echo cardiogram on Rhett's heart. There we will be able to get some answers as to what the pressures in his lungs are. The last two echos that he has had have shown pressures at 58 where the average person would be around 22. Granted they were done when his intestines were in his chest, and just after he had aspirated all of that yucky vomit when they did the chest compressions on him.

Just those factors alone could cause for some pretty elevated pressures in his lungs.

So that is how our appointment went with the ENT. I didn't find him to have the best bedside manner, but he is supposedly the best in the state, so I think we are stuck with him. Nicest guy till you don't see eye to eye with him, then he turns in to Mr. Hyde.

What really matters is that we have the CPAP machine, and we are working on getting him to tolerate it. Wanna see some pictures of him in the mask?

He looks like a little astronaut elephant!!

Trust my boy to make something as silly as a CPAP look cute huh? Have I ever mentioned how much I love this boy?????


~Melissa~ said...

Oh my - that sounds very frustrating! He looks very cute with the cpap. I hope it gets the results you need. Rhett is lucky to have you be so informed and in tune to his needs :)

Jodie said...

Oh good golly! Nothing irritates me more than when the doctors assume that Tyler is one way or the other simply because he has DS. It drives me crazy. I am getting quite good at standing up for him and saying what I think is right. I have switched doctors more than once!

I have to say that Rhett is a doll no matter what and yes, he looks adorable in his little CPAP! What a cutie bug.

Killlashandra said...

I admit I do not know what a cpap is, however it reminds me of a nebulizer which I have had lots of experience with. My son has had an on again off again respiratory issues.

However, I do agree with you about the doctor. When W.W. started having chronic ear infections one winter after the next, I couldn't get his PCP to even give me a referral. I switched to a Family Nurse Practitioner I know, who got me the referral, got me the ENT appointment, and I didn't let the ENT doc say no. Same doctor I saw a year ago when I could get a referral for the same problem. Then she told me he'll just grow out of it.

That got old really fast. I'm very glad you got the cpap. :) I did get tubes after much arguing and he hasn't had an ear infection since. He has an ENT apt tomorrow actually.

Christina said...

Rhett rocks, he can carry anything and still look cool, He is totally Vince' idol.

Sara said...

awwww, good for him getting that much on! Nathaniel wont even let us come close with just the mask :p

Jodi said...

Oh, SO cute! I hope the CPAP works out for you.

Anonymous said...

good for you... i am a mom of a now young men of 25 with many many medical issues and one thing i learned very fast..go with your instinct ( my child allmost died at the age of 1 week in the hands of a doctor (he was head of picu)..
my neuro-surgeon had lousy bedside manner but was great at his we learned how to deal with him...very often they are intimidated by parents of chroniclly ill children..i come on very strong and that is not what they are used tooo..tuff. its my way or the highway
good luck keep up the good work