This is some serious bedhead! What do you think he was dreaming about?
Why the title of this post? We lost our nursing care yesterday.
Yep. No care.
Nada..
Zero..
So now I get no relief from my son that is 24 hour constant care. What else is new? Do mommy's ever get a break? Nope not even on weekends!
It surprises me so much because I have fantastic insurance. And they've never denied anything that was a necessity for Jax. But they pay for 90 days of nursing care and thats it! They expect medicaid to kick in or you pay out of pocket. Yeah, because us moms of medically fragile children have money pouring out of our ears!
And not everyone qualifies for medicaid. We do have a waiver here, but they only take so many kids at one time. Jax is on that waiting list, right now he is number 15 on that list. It will be at least 6 months, probably longer to get on. And the lady at the medicaid office told me we don't have the Katie Beckett waiver here. Even though its a federal waiver, Utah opted out of it. How nice is that, our state really loves their special needs kids, don't they? Thats a nice kick in the crotch for us because we are trying so hard to move to California... if we lived there he would automatically qualify for their waiver, and double coverage comes with that. So he would essentially have 3 insurances! Diapers would even be payed for! Remind me why I still live in this state were the only childrens hospital almost killed my child? I feel like a horrible mother that I still have to take him to that hospital. I'm seriously considering dropping everything and just moving now. Life would be so much easier.
But we are going back down in April and daddy is testing with a sheriffs department down there. Pray for him that he does well on the test and we can be on our way there!
Sorry for the whine fest today!
sorry.
ReplyDeleteso sorry... that is discourging...hang in there!
ReplyDeleteThat stinks Lacey!! I am so sorry. I will certainly be praying for your hubby to pass the exam so you guys can move to Cali pronto!
ReplyDeleteThis is sad! I am sorry for all that you guys have to go through. I know we too were upset when we learned that the Katie Becket law was not in Utah. Lame!
ReplyDeleteIm sad we wont be seeing you today too, but I hope that you can get some sort of relief, maybe when J breaks outa here we can come visit. I know that even though I am stuck at home sometimes it's always nice to have company. When in April are you going to Cali??? We will be going to San Diego on the 7th
That is a pisser! Run to CA. RUN!!!
ReplyDeletePraying for Ray to do a spectacular job on his test!
Love the pics!!!!
Lacey we talked yesterday, and I don't know what to say. :( I wish so much that I could give your our nursing hours. You need them so much more than we do! I am so pissed off for you.
ReplyDeleteI hope that Ray sails through the testing next month and they want to hire him ASAP. You guys NEED to be here!!
so sorry to hear that, hugs
ReplyDeleteSo sorry. Will be praying for Ray and the job situation in CA.
ReplyDeleteLove the Jax & puppy pics too adorable!
I'm so sorry things aren't looking up for you right now. I hope that they change in the near future and we will be praying for you.
ReplyDeleteAdorable pictures by the way!
Well...I can't say that everything will be roses here in CA but for you guys, you need a change and that is what is important. However, DO NOT be hasty and just drop everything and run here UNTIL Ray has a job with insurance because I want Jax to have some coverage because you just never know with Medicaid and all that. We want you guys here so badly and I pray that something will work out with the Sheriff's Dept. I don't know when, but somehow it will all work out!!! By the way...damn it on the nursing care!!!
ReplyDeleteI don't know if California is the answer. They are one bankrupt state and having to cut back on everything. It's been easier for us to just pay high premiums and know that none of my children are the responsibility of the state, healthy or not. I feel blessed that we were able to get insurance for all of us and feel like the pre-existing condition denials for insurance are a joke. Maybe Obama's plan will help resolve that. Gotta be something positive in that health care reform mess. Love the pics of Jaxon and the puppy!
ReplyDeleteSorry to hear you lost your nursing care. That just plain stinks. Good luck on the job front. Hopefully, CA will be better for your family.
ReplyDeleteNo apologies for complaining because THAT SUCKS!!!!! We have the same coverage and when Chloe was on the cpap and we needed night nursing care we ran out too. It was awful. It's just so ridiculous. So I share in your fury. It can leave you feeling helpless and frustrated that the insurance companies don't want to help you! I'll be sending good mojo to Ray for the test!
ReplyDeleteBTW, LOVE LOVE LOVE the pictures of Jax and the puppy. Sooo adorable!
Thanks for your comment. I know how frustrating insurance crap can be. I just know that my friends in California are losing so much care and help for special needs and EI that I didn't know if it was the answer. Personally I'd love to move to California. It's my dream location--Southern Cali anyway. And the altitude would do wonders for someone dependent on oxygen. Does Jaxson qualify for DSPD (is that what it's called?) where you can qualify for so many hours of respite care? I know Morgan is on a waiting list for that because her needs haven't been like those of others who were waiting. Good luck with everything. And when you need a break . . . would love to watch cute Jax for you! :)
ReplyDeleteDivision of Services for People with Disabilities (DSPD). That's what it's called. :)
ReplyDeleteoh I would be whining too if I were you! That is awful!! I am so sorry!
ReplyDeleteSorry about the nursing being stopped! I often wonder why some people can get nursing so easily and then others, who REALLY need it, they can't! Praying you adjust to the change!
ReplyDeleteCute, Cute pictures! I love the one of Jax and the new puppy! Adorable!
Hang in there! Love and Hugs!!!
That's just plain ol' crappy!
ReplyDeleteI'm so sorry. Is there no other way around the wait list? I know here in TX there is a "shortcut" to get you moved to the front of the line for the medicaid. The bedhead just cracked me up, and a chocolate milk mustache to go with it, great morning if you're a kid. Puppy pics are adorable.
ReplyDeleteHow discouraging. I am sorry you have to go through that...
ReplyDeleteUgh....Pathetic....You go ahead and whine girlie...I'm in a whiney butt kinda mood too....
ReplyDeleteOh man I totally know how you feel. Maggie wasn't covered under the waiver until she got on her ventilator. So it was bitter sweet. We really didn't want her to have to be on the vent but she automatically moved to the top of the list on the waiver program and was covered.
ReplyDeleteIts funny I was having the same conversation with our social worker from the waiver program about this hospital here today. I just don't understand it. And I had put a hold on all appts because I didn't want her to be seen by anyone there. Now that we are going to Atlanta I am going to have her see pulm before we go. But that is it pretty much it. When we were in Boston it was a completely different experience. We are trying to figure something out to get to one of our top four hospitals. I truly hope things work out for you guys to get to california. I really know how you feel about our hospital here. Good luck! We'll be praying for him to pass his test!!
wow, this is a hot topic(losing the nursing, you have some good friends!) I hope to see you mon or tues, that will be fun. to answer your Q's... No Jonah is not on percautions, the rT's gown up because they deal with his mucus. We go to denver because they have a whole department of Pulmonary stuff! We see a renouned specialist who is pretty amazing. the plus side is that is where Pfeffer did her residency so she knows everyone there so I know that we are in good hands. we have only been once, and that's where he was diagnosed. If we do go this summer it would be for a lung function test. PCMC does not do this test on anyone under a certain age because thay don't have the medical equipment to do so...nor will they ever because they think it's a waist of time. Yes, that was a direct quote from an RT!
ReplyDeleteOMG I am SO sorry! It really sucks that they are removing your nursing care. I would like to see the insurance companies try to take care a medically fragile child for 1 day. I hope it works out for you guys to move to Cali.
ReplyDeleteOh Lacey - that is awful. Surely if anyone qualifies it is you guys???
ReplyDeleteLoved the photos though - gorgeous to see puppy sleeping with Jaxson, and loved the bed head too.
I hope the testing in California goes well so you guys can move ASAP.
Big hugs.
Just now reading your blog...new to the blogging world. We have 9 month old little boy with DS. I will be praying that you are able to move to CA and that you are able to get a break somehow.
ReplyDeleteThanks for sharing your life.
that's terrible that you lost the home nursing care :( I'm so sorry!
ReplyDeleteOh, I thought of you when I saw this link making the rounds on facebook...a Catholic family is looking to place their daughter with a forever family. She's been prenatally dx w/Ds...due in Jun..and it's a girl. Not sure how feasible this is for you, but wanted to pass it along 'just in case' it might be a possibility.
http://www.spence-chapin.org/adoption-programs/b2b_waiting_children.php?id=29
Sounds like California is going to be so good for Jax. It can't come fast enough
ReplyDelete