We found out when we were about 5 minutes from Wesley’s lung biopsy that he had a whole in his heart and pulmonary hypertension: oops did they forget to mention that 6 months before when he had his echo, nope haven’t been seen by cardiology. A freakin nurse mentioned it to us, not realizing we didn’t know. It was ugly.

Sometimes you want to strangle the hospitals/attendings.

The other thing to try is going up a cath size. Our urologist told us that if we kept seeing a lot of urine retained even after cathing that we could go up from an 8 fr coude to a 10 fr coude catheter and that this ought to help.

Eithene still has a fair number of UTIs, so we know that for her the retention is harmful. I hope that Ky’s cultures look ok!

I am glad to hear about the no allergies, although Ky could still have a lot of intolerances (simply means the ‘allergic’ reaction is NOT mediated by IG antibodies) which is what EIthene has. So, if you see a lot of food issues still, I would consider that type of problem.

As for the pulmo issue- well that stinks Before getting the fundo though I would make them re-do a swallow study to see if they can find the source of the aspiration Because if she is aspirating from above (ie it goes down wrong when she swallows) then the fundo won’t help you at all, and what you have to do is thicken her drinks. Just for thought- Eithene has a fundo, she doesn’t aspirate from above (on a regular basis) but, she STILL has aspiration of stomach fluids on all her bronchs.

Hope you can get to the bottom of that- yay for adding another dr- not.

Overall though, it sounds like a pretty positive few appointments!

Jessica
http://www.caringbridge.org/visit/eithenerosehilliard

I hope you guys have finally found some answers for that sweet little girl of yours. It sounds like you have!!!