New here...

[BennyJam]

Hi everyone!

My name is Haley and I'm a stay-home mom to a 4-year-old and 18 mos preemie twins. My youngest son Ben was trached when he was 5 months old, for ventilator dependence due to BPD. We have since found out that he also has grade I/II subglottic stenosis. Ben has been home since he was 9 mos old and doing very well. When he is well (which is most of the time!) we can sprint him off the vent but he still goes on CPAP for sleeping.

The nurses at the hospital where Ben was trached told me about this message board, but I am just now getting around to checking it out! I am really looking forward to connecting with some parents in my situation. Sometimes I feel like an alien around my local mommy friends!!!

~Haley

[My little figther]

Welcome to the boards!!! I am glad you finally found a little bit of time to get to it. You will see that the group of parents here are wonderful - very supportive and very knowledgeable - ask a question you will find an answer or you may give us one as well.
Michelle

[haltec]

Hi Haley and welcome! I'm glad you found the time to find us. It's a wonderful support group!

[alizesmom]

Welcome! Got to ask. Where in PA? We're starting to get several from here. Karen

[Kaylie]

Hi Haley and welcome to the board.
Kathy

[faywrayy]

Hi Haley and welcome! Glad you were told about the board, that's awesome!

This is a great group and they carried me through some rough times...they still do!!

Yes, where in PA???

[BennyJam]

Yes, where in PA???

We are just outside Philadelphia, to the north.

[JWorthington]

Hi Haley and welcome. Looking forward to getting to know you and your family. glad you finally found the time to take a look around.

Julie

[Gretchen(Celia's mom)]

Welcome!!!!

[JM'sMom]

Welcome Haley!! Cant wait to hear more about you all!:)

[faywrayy]

We are just outside Philadelphia, to the north.

What hospital was Ben in?? Kate was in CHOP for several months and no one told me about this board...I wish they had!! :)

[babysupermansmommy]

welcome! i look forward to getting to know you!

[BennyJam]

What hospital was Ben in?? Kate was in CHOP for several months and no one told me about this board...I wish they had!! :)

Hi Angela--Ben was born at Jefferson and he was there for about 9.5 months. We mostly see CHOP docs now.

[faywrayy]

Gotcha! Who's your ENT at CHOP? Kate's seen by Ian Jacobs. I love him!


Hi Angela--Ben was born at Jefferson and he was there for about 9.5 months. We mostly see CHOP docs now.

[BennyJam]

Gotcha! Who's your ENT at CHOP? Kate's seen by Ian Jacobs. I love him!

We see Karen Zur. I have mixed feelings about her, but the wait for Jacobs was outrageous (because Ben was a new patient). Maybe we'll see you at airway clinic one of these Thursdays!!!

[faywrayy]

Hmm, we've only seen her once, and Kate was still in the NICU at that point. She seemed nice enough. We'd have been on her service permanently I bet, if not for Kate crapping out over a weekend and Jacobs being on call.

Actually, I think they work pretty closely together. When Kate was scheduled for her LTP this past July, Dr. Zur was going to take her stent out and bronch her. Dh and I were fine with that. That said, Jacobs is an excellent excellent doctor, but he isn't warm and fuzzy. He's pretty serious, but he knows his stuff and we worked really hard to make him think of Kate as a person, not just a trach with a baby attached. We're not scheduled to see him now until Feb 12. But if Kate's ears don't drain, we'll need to go sooner!!!

If you're not crazy about Zur, you should ask to see Jacobs. Now that Ben is a patient, maybe they won't make a huge deal about it.