Alex Update

KJKK8437 · #1 04-30-2008, 05:11 PM

So, here's the latest. The pulm called today. We may be going in for the bronch on Tuesday or Wednesday. They won't know until Friday which one.

We also talked to the Pediatrician about the mucus pukes. Believe it or not, he has some experience with trach kids. He thinks that Alex is too young for allergies, but there could be some irritation from the pollen and other allergens that is causing excessive mucus to drain. He's not alarmed by the mucus pukes, and he does understand my desire to try to stop them. After all, how we will get this kid over his oral aversion if his stomach is upset all the time?

So, an antihistimine is an option, but not yet. He is concerned that it will cause excessive thickening of the secretions, and he won't recommend it right now. If the pulmonologist wants to try before, during or after the hospital trip, that is one thing, but the Pede is concerned that thickening the secretions will make Alex test badly on the decann attempt. He did say, too, that during the bronch the pulm and ENT will be able to get a better idea of whether we are dealing with upper airway secretions or lower airway secretions, which will give them a better idea of what to do about the mucus.

Finally, he is optimistic that things will improve rapidly once the trach is out, because my descriptions of all Alex's symptoms seem to fall right in line with low-grade tracheal irritation -- his body just still wants the dang tube gone and is still working to lubricate it away.

Of course, everything the Pede says is qualified with, "Check with the pulmonologist, but this is what I think." Of course, we will, but it sure is nice to have a doctor that has time to CALL ME BACK!!!!!!!

Hope · #2 04-30-2008, 05:43 PM

All in all, sounds like good news! You're lucky to have an experienced ped.
Hope

Ola · #3 04-30-2008, 07:56 PM

Less than a week to wait! This is very exciting.
I am glad the mucus puking does not seem to be serious. Hopefully it is really a trach issue and soon Alex will be free of both!

KJKK8437 · #4 04-30-2008, 08:47 PM

Quote:

Originally Posted by Hope Reese

You're lucky to have an experienced ped.
Hope

Luck that he was an option, but not so much luck that we found him. I knew our intended ped. couldn't handle it, so before we were discharged, we asked the neonatologists which peds in the area were best able to handle Alex. They gave me two names of the docs, and we picked from that. I've never been so glad for such a choice in my life. We drive a little further, but it is so, so worth it.

Ainsley's Mom · #5 04-30-2008, 10:52 PM

That is very encouraging Karin. I hope you get some good news at the broch!

My little figther · #6 05-01-2008, 06:50 AM

I hope you will get good results with the bronch. Since you are in Vienna who is your ped. Just curious because we manage to get Cedric out we may need a ped that is experienced with trach as well. - Thanks
Michelle

KJKK8437 · #7 05-01-2008, 07:55 AM

Quote:

Originally Posted by My little figther

I hope you will get good results with the bronch. Since you are in Vienna who is your ped. Just curious because we manage to get Cedric out we may need a ped that is experienced with trach as well. - Thanks
Michelle

Michelle -- We go to Sleepy Hollow Pediatrics in 7 Corners. We see Dr. Crock and Dr. Fox. There are many docs, and they all have admitting priviliges at Fairfax, and they do rounds there every time one of their kids is admitted. (I know they go to Arlington and other places, but I don't know if DC Childrens is one of them. It might be.) I would highly recommend that you make an appointment with Dr. Crock and visit before Cedric comes home. They will walk you through how they work, and how Cedric will be treated a little differently by the practice. (E.g., most kids have to rotate doctors, but Alex does not. He is instructed to see only the full-time doctors except in the event of an emergency, and we are to see one primary doctor and one backup. They feel it important in getting Alex the best care. Sometimes I have to remind the front desk of that, but they usually remember because they know Alex.) Also, I would tell them you are having some problems getting adequate care and need Medicaid info. They have a nurse that likes to take on projects, so Dr. Crock tells me. I've never had to use her, but she was offered as a resource. I'll PM their phone number.