Wednesday, January 6, 2010

medical mumbo-jumbo

We had a pulmonology appointment today. Have I said how much I love her? Every time we see her she spends an hour with us, talking about everything under the sun with him.
It was a trach follow-up, but also I wanted to talk to her about how he still doesn't sleep at night. I've caught him desatting twice while sound asleep. Some people say he probably had a mucous plug, but he was not junky, and he never even stirs. It was just like before the trach. So here comes the medical jargon..
We talked a little about lung disease. I wanted her take on what causes lung disease. I had heard that being intubated and on the vent causes lung disease. Well she said that just being on the vent doesn't cause lung disease, its the pressure the vent is pushing. So if they are really sick and have a really high peep, thats causing more damage. And he's definitely had some extremely high pressure support on the vent. Looking back, there was a couple of times were they probably should have put him on the oscillator just to save lung tissue. There was twice were he was at a peep of 15, which is the highest they will do on the conventional vent. Extubation is usually around 5, and they consider 8 and 9 to be a lot of support. So 15 was basically trying to shove air into his lungs, not good.
Also she said the DS kids in general have smaller, weaker lungs. And of course refluxing and aspirating does a lot of damage. And then you have pulmonary hypertension, that does damage. So there are a lot of reasons why Jaxson's lungs in particular are toast! She said he probably will never be able to come off the high doses of diuretics he still requires, that his sick lungs sluff off a lot of fluid.
She does a lot of shaking her head when she meets with us. Not in a bad way, just amazed at how complicated he is. When looking at him, you have to think of everything before you make decisions. He has pleural effusions on both lungs. Its chylus fluid, which he has a history of having out of the blue. But chylus fluid is fatty fluid, and he is on an all fat diet for his seizures, so it makes the effusions worse, but we can't do anything about it because he needs the diet. How this kids lungs even work is beyond me!
She wants another sleep study, yipee! (Sense the sarcasm?)
She thinks he needs the vent at night. I knew that was the direction we were headed. But if it will help the kid sleep at night then bring it on. She thinks with his already sick lungs and severe hypotonia, that he just needs a little extra help when he sleeps. She's thinking c-pap settings on the vent will give him the extra push he needs to oxygenate well.
So we will have the sleep study with a full EEG because of his seizures and go from there.

15 comments:

Team Carter Jay said...

I love her too! It sounds like she's taking great care of Jax.

ABandCsMom said...

Good Lord Lacey...that's a ton of info for just one appt. I'm with you. Bring on the vent if it means Jax will sleep peacefully. And you too. Plus, your mind will be at ease knowing the has that extra support during the night.

Love the blanket that Sarah got in the mail the other day. I can just imagine how excited she was. I just love her. Hoping to meet her one day.

mandd3 said...

Lacey, I love Tomas' pulminologist too! She takes 1-2 hours also. Out of the 10 specialists he has she is the one who sort of watches the big picture. She has made such a difference in his health. Question, when Jax desats does it last long or does he bounce back up after 10-30 seconds? I am very glad to have "met" you. I love the blogs of people a few years ahead of me on this road, You are indeed a special mommy.

Anderson Family said...

So glad to talk to you today! I love the information and maybe that information will help me make the decisions that need to be made for Carter. Maybe I need to go see the pulmonologist too! Jaxson is so cute - I love his work out pictures!

Dotty said...

sounds like a wonderful dr, so glad she listens and cares!!! i know the appointment was kinda expected and yet somewhat overwhelming too. hang in there, your doing a wonderful job for Jax:)

Phoenix's Mom said...

Sounds likes Jaxs is in good hands. Give our cute boy big hugs from us. Let's hope this all helps him get a good nights rest.
Phenny Man loves his Mickey Mouse blanket. It goes every where with us!

The VW's said...

Jax, you just love to keep everyone on their toes, don't you?!

I'm so glad that you like this doctor and that she is so helpful to you! I hope that the vent/c-pap makes a difference for him and that you both can get more sleep!

Love, Hugs and Prayers!!!

Alicia said...

Great doctors are a true gem! So glad you love his pulmo, so important.

Jax, you little rascal! Ya think you could be straightforward on just one little thing? ; )

Hugs and prayers...

Anne and Whitney: Up, Down and All Around said...

I hope the c-pap settings at night will finally bring some much needed sleeping through the night (with out any de-sats!) I love the blanket you made and sent to Sarah!!!!!! :)

LisaL said...

Love the new blog layout! Cute!!

Junior said...

prayers that you will find an answer to teh sleep issue
love the new layout

ParkerMama said...

We were just up at PCMC today doing a FEES study.

ugh.

And the results were less than stellar as well.



The word botox was used as well.

Kristen's mom said...

The medical mumbo-jumbo is so fustrating! Your new blog look is so cute!

My name is Sarah said...

This is Joyce. It sounds like a good plan is in place. I just wish someone could figure out a better way of dealing with these lungs. I sure hope you can get some sleep soon Lacey. I know that feeling of total exhaustion and your body just can't keep it up long term. Hugs and prayers to you.

sturpin said...

She sounds like a wonderful doctor. I hope you can get some answers from these tests.