Medicaid and my medically fragile kid.

Last week was the big Trach/Vent Clinic where we get to see ENT, Pulmo, a Developmental Doctor and a RT.  It’s a long day but it’s worth it.  A couple of things that happened though, made me wonder about the future of Medicaid.

We don’t usually see Pulmo at Primary Childrens Hospital.  Trach/Vent Clinic kind of requires it though and so we make our rounds through which ever Pulmo is on that day.

This was the second time we had seen this Pulmo.  The first time he glanced over Parker’s history and med sheet, said he wouldn’t change anything, and walked out.  Yes.  We waited two hours for that.

This time this guy walked in looked over his paperwork and then noticed that one of Parker’s  meds:  Xopenex.

Suddenly this guy looks at me and exclaims that Xopenex is WAY too expensive of a medication for Parker to be on and he is going to put him on Albuterol instead.

I politely try to explain that Albuterol sends Parker up the wall and sets his heart rate through the roof, so he was switched from Albuterol to Xopenex.

No,   Pulmo insists.  Albuterol, being as cheap as it is, is perfectly fine for Parker.

Levalbuterol HCI

Finally I inform this guy there is now a generic for Xopenex which is much cheaper, and did I mention that Parker has private insurance?

Pulmo flips through a few sheets to where Parker’s general info is and tells me that all he saw was that Parker was covered under Medicaid.

I reminded this guy that with the new plans in place our private health insurance gets billed first, and THEN Medicaid picks up the rest.  By this time I was certain the issue wasn’t keeping Parker alive, but how much it cost to keep Parker alive.

Either way, he continues to insist, that Albuterol isn’t going to raise Parker’s heart rate enough to matter, the person who put him on it was being ridiculous.  He then tells me that it is time for him (when pigs fly, baby) to do a bronch on Parker to see if we can start weaning Parker off the vent……..because vents are expensive.

Again, I try and explain that Parker’s airway issues are so severe that the vent is going to be a life long companion.  Again this Head of Pulmonology tells me that NO kid with Pulmonary Hypertension is on a vent for life, because kids with Pulmonary Hypertension always outgrow it.


This guy needs to go back to PH 101.

The really scary part of this though was having this guy go through every single item used to keep our Brave Hero alive and tell me which was too expensive.

I tried to quip that we had the medical bills that we are still trying to pay off to prove that we know how expensive Parker is, but it was thanks to the meds and durable medical equipment and Parker’s medical team that our kid was still alive.

Even with Parker’s waiver and private insurance we still spend a significant amount of money out of pocket for items not covered by either private insurance or Medicaid that Parker needs.  Senna, Liquid Vitamin B, and Probiotics, items for his blenderized diet are just a few of those items.

This is the first time I’ve ever encountered this too expensive attitude from someone who is supposed to be invested in keeping kids breathing.

I have a sick feeling it won’t be the last.

Reed and I have talked about the possibility of Medicaid patients receiving less than stellar health care (or for that matter will ANYONE be able to afford health care?) in the future.  Last week was a very eye opening experience for me.

So, we’re re-evaluating our spending again.  I just cancelled the last two items I loved that I was holding out on. Hey, $20.00 a month is $240.00 a year less in medical debt, right?

There were a couple of things we had thought about signing Parker up for.  We’ll put those on hold too.  My Mom and I are going to try and make a once a week Day of Learning and Adventure for Parker that won’t cost anything instead.

The Moral/s of this story?

  • Even if your child is on a Medicaid waiver, they deserve health care that best addresses their individual needs.
  • Understand your child’s diagnosis.  Learn all you can about it.  Be willing to ask questions and share the latest literature published on your particular association’s sites.
  • When dealing with something potentially life altering, don’t be afraid to get a second opinion.  Your kid’s doctor would do the same for THEIR kid.

Think I’m being overly cautious?  Check out this video on children’s prescription drug costs and  what other families are experiencing in regards to health care.

Still think I’m crying wolf?  Save the MFTD Waiver

PS:  If I thought there was anyway that Parker could be weaned off the vent and then off his trach I’d be the first one shouting it from the roof tops.  But Parker’s regular Pulmo has explained to us that this just isn’t in the cards for a certain Brave Hero.  I’ve made my peace with the fact that both trachs and vents will be a part of our  lives.  If truth be known, I may have said a prayer or two of thanks for these two items that keep Parker breathing.

A little boy with Down syndrome

A life with a trach can be a wonderful thing indeed.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.


  1. Always praying for yo’all- and I, too, as a aptient forced onto Medicare due to dialysis (and having to deal with the loss of m private insurance after 7 years) am worried about where we are going.
    PS Your first link to the video is not working

    ♥u and the BH

    • Kelli, I didn’t realize you had lost your private insurance. I have no doubt that one day ours will go up into a poof of smoke as well. I’ll have to take that link out, I think it was only there for the day or something. drat. Love you right back!

  2. Oh, boy. My comment about him being a “nice man” left out the doctor part on purpose. When “educating” his resident on Aaron, he kept refering to him as having Downs intstead of T18 or Edwards, in spite of being corrected. I think I said it several times before he clued in. I worried that if he couldn’t get the primary diagnosis, right on top of the chart, right that I didn’t know what else he might be missing. And when I talked to him about weaning, he was like, well, if you want to, you can try. But it took bringing things up with the the RT to actually start getting the things we needed, including the Rx for the nursing company. Thank heavens for CH and her team of RTs. I know I’d be lost without them.

    • Oy! This guy is the Head of the Department! If I didn’t know as much as I do about PH and have a dear friend who has read all of Parker’s records and has sat me down and explained the realities….and if I didn’t have Pfeffer……I could see me jumping for joy that Parker could lose the vent and then the trach. Pfeffer says she sees it all the time. Then when they come to her they can’t even walk across the room and by then it is too late, a life is lost. I know they have two new Pulmos up there but I think they have them reading sleep studies all day. Thank Heavens for Pfeffer and Conner who I know in a jam would send out the rescue squad.

  3. Tammy, this is why Pfeffer left PCMC in the first place! I never gave the pulmo at the trach/vent clinic the time of day! Because I already had a great pulmo. I would tell him to shove it, that your REAL pulmo will take care of everything! Seriously, I had the same copay for xopenex as I did for albuterol! It’s not more expensive!!

  4. Johnny and the rest of the ankle biters gang's cage tamer- aka: Mommy says:

    More expensive for WHO?! We live in this reality every day with my medically fragile boy too.

  5. This makes me so angry for you – and since this post didn’t end in a dramatic door slam and some “grown up” language I’m impressed with your restraint. I hesitate to ask your feelings about Obamacare but I’m curious – I know far too many people who have NO health insurance. One ER trip and a CT scan and they are d.o.n.e. I don’t know what the answer is but surely there’s something better than the current mess.

    • My 2 year old has Down syndrome and is on MO medicaid. They cover most of what Rhonda needs, which we are grateful for. Since I have no insurance, I have gone years without a scan for the return of my thyroid cancer. Any money we begin to save for a $2,000 scan gets used on Rhonda for medical or therapy bills and products not covered by her insurance. I could afford the replacement meds, but not the office visit and labs to get the prescription. I am leery of Obamacare because of its costs and the demand for us to have it. I am afraid that since we cannot afford my care now, how will we care for Rhonda’s extras when the money is spent.

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