Am I the only DU parent of a trach kid?

[vi5]

Never asked that question, for a multitude of reasons. Too busy dealing with my son's issues to post much, privacy (at least as far as anonymous internet posting goes), etc.

I posted very, very briefly about my sons issues in other forums but it's been a hell of a 14 months since he was born and a life altering experience in about a million different ways. He's doing so much better now than we had ever hoped he would be when we were in the thick of our 4 month, Kafka-esque hospital ordeal after he was born in July of last year. And long term, lifetime wise he's going to be 100% (well, maybe 90-95%, but still better than a lot of kids we saw over our year of hospital/doctor visits).

But between doctors, insurance, nursing, keeping a marriage together, also raising a 5 year old.....hoo boy the stories that could be told.

[BlueIris]

1. Spill it here, vi5.

We like to hear parenting ordeals here in the Lounge.

[Rabrrrrrr]

2. What's a trach kid?

[vi5]

3. A child with a tracheostomy...

You know the thing they do on medical shows when someone is not breathing and they cut a hole in the base of the neck to open up a direct airway to the lungs? Or if you see someone with a valve in that spot for them to breath through.

[NC_Nurse]

4. Does he have Pierre-Robin (sp?) syndrome?

I feel for you. A trach is a big issue in a child. I don't have one in the family, but I've taken care of many in the PACU. Airway
issues are always tough. I've seen many parents who are really expert at dealing with them, kudos to them! You have my support and respect.
I'm sure the stress must be incredible.

:hug:

[vi5]

5. Wow. Incredible...

Considering how uncommon it is. Yes. His initial diagnosis was Pierre Robin. However he also had a lobectomy to remove the upper left lobe of his lung. And then on top of that he has tracheal malasia and laryngo malasia. And the multiple intubations caused some sub-glottic stenosis. We got him to 5 months old without the trach but the issues got to be too much. Once we did it though it was the absolute best decision we made. Tough as it's been on him and us, it's allowed him to grow and develop in a way that he wasn't before we did it.

And let me say thank you to you, and to all in your profession. Between the stay at the NICU and PICU (about 5 months of his life in total), as well as the wonderful home nurses that have become a part of our life, I have developed such tremendous respect and awe for your profession. None of us would have survived this ordeal were it not for the amazing, wonderful, caring, brilliant nurses we've had the tremendous fortune and pleasure to have care for our child.

[NC_Nurse]

6. Actually, we see quite a few P-R kids at my hospital.

Sounds like he (and you) have had a really tough time! Be kind to yourself, it's a long haul.
I'm glad you've had good care, and thanks for the support for the profession! :hug:

[SarahB]

7. No, but plenty life experiences with it.

Somehow, I have been fortunate enough to have very healthy children although one had a severe bout of RSV that we cared for at home (former husband was a pedi/nicu specialized RT). My brother has multiple disabilities and had a trach for several months when we were kids. I used to work in pediatrics and now I'm an RN that works in women's health (gyn surgery, gyn oncology, high risk antepartum, mastectomies and breast reconstruction). My mom is a ped home care RN with a trached, vented little boy she cares for.

Stress of a very sick child on a family is an extremely difficult thing. My parents and my life is forever changed because of our experiences with my brother. My best goes to your family. :hug:

[vi5]

8. As mentioned in my one response above...

Thank you for what you do. While we've had a good share of decent, well meaning, and sometimes brilliant doctors, the ratio of good to bad nurses has far, far outweighed the ratio of good to bad doctors we've had to deal with.