The Discharge Nurse came by to touch base today. She didn’t want to make me feel badly, but did I know how rotten my insurance company was? Seems like when a newly trached kid is discharged they get a Trache Kit. This trache kit includes emergency supplies, a battery operated suction machine and a portable pulse ox machine. The pulse ox machine lets me know what Parker’s oxygen levels at currently at and helps in knowing if suctioning is needed.
This Trache Kit must go everywhere with Parker from now on. This has been drilled into our hearts and heads. The Trache Kit saves lives. Literally.
Guess who’s insurance company won’t pay for the portable pulse ox machine? Yup. They figure I can just bring along our 30 pound home machine. Yeah. So anytime Parker needs to leave the house I now must bring:
An oxygen bottle that I drag behind me in a oxygen carrier. Cause we know MY insurance company won’t pay for the liquid O2 that comes in a teeny little over the shoulder, lasts forever pack.
The Trache Kit This includes a battery operated suction machine, resisutation bag, extra traches, etc.
A FULL SIZED pulse ox monitor.
Parker’s ostomy supplies. (Uh huh. This is a HOSPTIAL and they can never find ostomy supplies anywhere.)
Bottles, meds, diapers, etc.
Oh. And Parker. 
Then there is respite care. Or, should I say the lack there of. So far the best offer my insurance has put on the table is a nurse to come in TWICE to watch us change out Parker’s trach so that we will feel more comfortable.
The Discharge Nurse was totally flabbergasted that Parker has yet to qualify for Medicaid. She thinks perhaps finally now that there may be a chance that Parker may qualify for the Travis C waiver since he is now considered to be technology assisted. Could of sworn he was before, but maybe this time someone will take a bit more notice.
Alas, Medicaid won’t pay for a portable Pulse Ox machine either.
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You have got to be kidding…
BUT since I KNOW you are not (remember, I’m the one who couldn’t get the $800/month formula that I needed to keep my kid alive)
I’m going to keep praying for better solutions and go cook dinner for my family.
Tammy – Do you know what kind of portable pulse ox you are looking at? Would a fingertip kind work (where you insert your finger into the machine), or do you need something with a probe that wraps around a teeny tiny Parker finger or toe?
You should really contact Michael Moore – I haven’t seen the movie, but your story sounds like something out of his latest, Sicko, about the health insurance industry.
Debbie (Binny’s Mom)
Wow, they really bite. UGH! I wish I had some answers, but since I haven’t, I will offer more hugs & prayers.
Love,
Kei
Wow, that is just not right. There has to be a way to get a pulse ox. Hang in there and lots of hugs and prayers!
I just can’t believe your ins company! They make no sense! I really hope Parker will qualify for that waiver now!
I forgot to mention that I gave you an award
I don’t know a lot about insurance other than how much it sucks when you really need it, even though you pay out the wazoo for it each month. Is Parky eligible for SSI? Is that part of the medicaid program? You’ve probably already checked into that, but I’ve been meaning to ask for a while.
I wish I had a million dollars…I would buy Parky his very own full time nurse to help you and hold your hand when you feel alone and claustrophobic and his very own portable pulse OX machine. And lots of ostomy supplies.
I am praying that Parker WILL qualify for Medicaid. I can’t believe what your insurance company puts you through. You have our constant prayers.
Is there possibly a social worker in the hospital, as long as you are there, to help push for Medicaid or SSI or anything? Just a thought. My sister is a social worker in a hospital and I know she assists families going home in all kinds of situations.
Love to that sweet boy!
Barb and Michael
ugh. What kind of pulse ox is it?? Mymom had one while on hospice care… the one youstick your finger in?
That stinks.
I’m pullin’ for ya!
You have got to be kidding? What the heck, I mean what on earth is Medicare for if it’s not for kids/families like yours?! UGH, I will be praying that SOME KIND of solution comes your way – that’s gotta be something!
Your insurance company is the worst one I’ve ever heard of. I can’t even begin to imagine how hard it is to deal with everything.
Perhaps a phone call to a Michal Moore-esque organization WOULD help.
I hope tonight is a good one for Parker.
Social worker, social worker. I cannot repeat this enough. They will get on the phone for you.
Don’t you need the portable machine to take Parker home? Maybe you can convince your ($#$!) insurance company that paying for the portable machine will decrease the length of his hospital stay. If you need this everywhere, you certainly need it on the drive home.
Praying that your insurance company sees sense, that Medicaid comes through (although I hope that doesn’t make things more of a paperwork nightmare for you, I’ll add that to my prayers as well) and that you have the strength, knowledge, and patience you will need to get through this adjustment.
I am looking online for a pulse oximetere machine. Not knowing what kind Parker needs, it doesn’t help that much, but it really doesn’t seem THAT expensive for an insurance company. GRRRRR…….
Tammy,
I have something for you and have emailed you about it. It’s not the pulse ox you need, but it is something Parker will love. Check your emails and get back with me.
Thanks,
Teresa
Hi, I am a long time reader…but I really never comment until now. I am sorry you are going through this…it almost seems illegal. Anyway, you are on my church’s prayer list, and many people here in my small town in Southern California are praying for you! I just saw this on eBay, is this the kind of machine you need? http://cgi.ebay.com/NEW-SPO-Check-Mate-1000-FINGERTIP-FINGER-PULSE-OXIMETER_W0QQitemZ270155071065QQihZ017QQcategoryZ104225QQrdZ1QQssPageNameZWD1VQQcmdZViewItem
Let me know, as I am sure our church can get this for you, especially since it will make your life so much easier. Same with the portable liquid oxygen thingy…what kind do you need, what is it exactly called? Maybe we can do that as well, or instead of the pulse ox, in the event someone else buys that for you.
We are all praying for you!!!
XOXO
Hello Tammy and family, I was reading Primary’s website page and the equipment supply section mentions getting equipment out to people regardless of their ability to pay. grrrrRRrrr..This shouldn’t BE so HARD! Have you contacted Children’s Miracle Network? If anyone needs their help it’s Parker.
{{hugs}} I feel SO helpless so digging on the net is about all I can do. It’s not enough that Parker needs so much help but the blasted insurance companies make it an uphill battle all the way. I wish I knew who they were…i’d have a few choice words (well I’d have to behave but…)
{{hugs}} Kitty
How awful! That is just so wrong.
I’m so sorry, none of this should be so hard. My goodness, I’m so sorry.
Hugs
Banging my hard head against the wall right along side you. Geez, your insurance company may be the stinkiest of all time. Ok, who can we call, write or pounce into their office…not at your insurance company, but some government official somewhere. I get angrier and more frustrated each time I read your insurance posts…and Parker isn’t even my child. And I know your family isn’t the only one dealing with such issues. Fuming now.
I’m serious, what can I do? My mouth is huge and my spirit relentless.
On a lighter note, you made me LOL picturing you carrying everything on an outing…then happening to remember to take Parker.
Hugs and prayers always. ox
Blah! Your insurance company sucks. You need to give us all their phone number and we will call and make complaints for you… good luck!
How awful! I can’t believe your insurance company! I will continue to life little Parker up in my prayers and pray that you will receive the pulse ox machine soon!
Ughh. I agree with the Michael Moore suggestion- seriously!
ask how much the kit costs–we could do another fund raiser for it maybe, at least for the pulse ox and some of the pieces, and over time up one together for you.
hang in there. but get the info–might also be cheaper to purchase on-line. God bless and keep you all.
I am so sorry to hear about this terrible situation. Insurance companies stink. I hope that all of your issues will be resolved soon, and that Parker will be happy and healthy.
I agree with all of those above me who said to contact a Michael Moore type place and also a social worker. I would even write a letter to the politicians in your area/state. It’s worth a shot. If you don’t have the time to write the letters I bet you could find people to do it for you. I volunteer!
Hugs to you and your family. You are in my thoughts!
_Angie_
Tammy – I think all the principals and teachers need to flood the district with complaints about the insurance company and get the district to change plans. I am so angry for you
I am hoping with this latest change in Parker’s status that you will now qualify for DSPD – have the social workers at the hospital call – have Karen T. call – she should be able to help more now that he truly is considered technology assisted. I am so mad that they will not have more nursing care and respite care for you – that is soooo wrong.
Saying lots of prayers for Parky – give him some smooches for us!!!
I’m so sorry! How stupid is that insurance company?!
And yes, we will pray for Parker. I’ll get my kids to start praying for him. The last time I asked them to pray for a certain individual, they (especially my sweet 6 year old) prayed for them for months and months and months. And I’m sure Heavenly Father really listens to the innocent prayers of little children.
It is all just soooooooooooooo insane!!!!!!!!!!!!!!!!!!!
we want to help your little boy..i know how you feel..be strong.please tell us what you need ? can we send you some money ?please let us help you…
hope today everything goes well and Parker will feel good
Little Parker’s new quilt is on the way. Meanwhile, we are doing some serious praying for his situation, hoping that things look up soon. hugs, Kate (Circle of Hope)