T-man is still in the hospital. UPDATE

jerseycaptive

Okay, so Lil' T-man is now at another hospital.  He's been in three since early July.  He had his trache procedure last week and I came today in the cold, wet weather to watch the 1st trache change, only for the ENT Dr to be "out of town".  Am I surprised?

T-man has been intabated 2x which made us seriously and quickly consider the trache, however because of he's had an elevated temp, they kept pushing back the surgery.  Now he has an infection in his trache, and he's teething with not one, not two, but four (4) teeth coming at the same time.

Poor baby!

We do not qualify for nursing services because I'm convinced our state hates people like me.  We may get some nursing visits thanks to our insurance, but I know we're limited.

I'm also pissed to learn that I could have qualified for an institutionalized medicaid when T-man was in the NICU.  SSI (or something similar) could've covered part of the medical costs as long as he was institutionalized for 30+ days.  These medical bills are killing me!  
And it's too late for me to request that they be covered. 

I'm starting to resent DH because I really wanted to do an internship, but someone has to be home and learn how to maintain this trache.  I've already missed out on an industry exposition this week and I just wished it wasn't just me putting her life and dreams and career on hold. 

I really gotta find a work-from-home gig.

Vent over. 

Hi everyone!   How's everyone doing?

breezy0629

Are you sure it's too late? I had things covered up to 90 days prior to my application.......

Pierce3252

Well I hope things get better soon!!  We are doing really well!  Weekly PT is helping tremendously!

FWIW, we qualified for a special needs medicaid card here in our state - not the waiver variety (you might check into that in your state) - the type of card we got is good until he is 3 years old and has to be re-evaluated each year. 

I worry about the career thing too - I am thinking of no longer working after I have this baby and then I could stay home with Isaac and the new one for awhile.  It scares me - but I know its for the best for my little kiddos.  I hope you find something great that gives you more flexibility! 

 

Makinroom4baby

I'm so sorry you are dealing with this. Definitely check out the special needs medicaid. It doesn't matter how much money you make as long as your child has a qualifying condition.

And, OMG, T man is SOOOO CUTE!!!

SweetMonkey

I am so glad u updated, have been thinking of  you.

I would keep trying to get any kind of extra medical and cash help you can get. and as far as insurance, I would see about having the dr's do appeals to over ride the limited # of nursing visits.

insurances have policies and limitations, but they also have appeals and overrides, it's work but sometimes it pays off. Just remeber don'ttake teh 1st no you get.

this is NO way compairs, but one of ur ER visits was denied (not medically nescessary) I wrote my own letter explaining the reason for the ER trip and how if I had waited that the baby could have gotten worse and therefore would have needed more that eval and tx in the ER, but possible inpatient hospitalization and how that would have cost both me and the insurance more money.  The denial was overturned and coved.

nanakwaz

I am so glad you updated!  I'm sorry Terrence is having a hard time right now.  Drake had a few infections, too but soon his body adjusted and (knock on wood) he is doing much better with that now!

I can't believe your little guy is teething, too!  Poor thing!

I just wanted to put my 2 cents in about getting services.  Unfortunately the social workers don't know a whole lot about what is available sometimes so you have to do a lot of digging on your own.  And, I have probably beaten this horse to death but, other parents in your area are going to be your best resources.  If your hospital can't help you try tracheostomy.com.  There could be parents in your area that already know the system!

https://www.tracheostomy.com/forum/index.php

Lastly, I went back to work while Drake was in the NICU and after he came home then I got laid-off in January.  I was so upset that I couldn't wait to find work again!   I went back part-time in May and now I wish DH would find something so I could quit.  I just feel like I'm missing so much right now.   I hope you can find peace with your situation.

Best of luck to you and T-Man!  I have been thinking about you both a lot.  Please let me know if I can help with any trach questions!

Septmomtobe

I'm confused as to why you don't qualify for medicaid? That should cover home nursing care.  It's not based on income as it is based on medical need. Can you explore this option or appeal the decision if you've been denied?

Heather