Vent

vent vest 001

Monday, October 28th

“Fantastic!”  Dr. B’s accent rang in my ears as I loaded Riley into his van to make the long drive for the first appointment of the day.  Mind you, one of the precious airbags keeping our precious accessible van from dragging on the ground has developed a leak…. we were in for an uncomfortable ride.  I felt confident. Dr. B. regularly praised Riley’s health considering his disabilities.  Entering the cold season I expected to increase the nebulizer treatments.  We had been through this routine before.

Not this time.  Riley brought a cold with him into the Pulmonology office.  The silent alarms must have triggered as we entered the office.

Dr. B hit us with his full arsenal:  Budesonide (Pulimicort)- up to four times a day, Albuterol up to four times a day as needed, Ipra-whatever up to four times a day as needed and a round of antibiotics.  Four times!  Never had I heard that high number come from this office.  How do you fit all that nebulizer time into a day.  And the fun, was just beginning as Dr. B called for his Respiratory Tech.  “Riley needs meds now… Fit him for a vest!  In fact, ventilation vest for Riley now!”  What.  Where is my “Fantastic!  You do a great job!”  Huh?  Masks, meds, measuring tape some floatation device looking thing with wild tubes and a thumping, chiming machine were all over my kid while I supported him through this new pulmonary ritual.  What just happened?  I think I will take my boy home and return next week.

Nope, Riley needs a Ventilation Vest.

Then came the litany of instructions:

Use four times a day (there’s that four again).  15 minutes each.  We have to order one.  He may be rejected (oh good – how often do I actually want to hear “rejected”?  Well, last week actually when I reported for Jury Duty.  But just like Jury Duty, there was no escaping this now.  We have sent all of his scripts to the pharmacy and they should be ready immediately.

Pharmacy stop: Most of the order ready, but Budesonide is delayed.

Tuesday, October 29th

Neurology Clinic – more meds – well of course.  Return in three months.  So soon? Of course.

Pharmacy stop: Budesonide is delayed.

Wednesday, October 30th

I answered the phone to a Sara in response to our request for a Ventilation Vest.  That’s not how I remember it.  But, I am not worried.  Most patients are denied.  “Riley’s vest is on order and a Respiratory Therapist will call you…”

No!  Please do not add more to Riley’s routine!  Please.  It takes the child an hour to eat.  Forget about the food prep, forget about the diapering, and medding, and nebulizer, and bathing, and stander time, and massage and bathing procedures and most importantly, cuddle time.  Forget about how long it takes to dress him and how many changes he requires in a day… What are you all doing to us?

Pharmacy automated message: “Your order has been delayed… We have contacted your insurance carrier so you don’t have to do anything else.”

Van: Airbag on order, sit tight this is going to take awhile.

Thursday, October 31st

Respiratory Therapist calls.  He is not wasting any time.  He will arrive on Wednesday after school.  We have a few days reprieve.

Pharmacy automated message: “Your order has been delayed… We have contacted your insurance carrier so you don’t have to do anything else.”  I hear: “No one knows the hold up, but we would like to placate you now so you don’t bother us any more.”

Van: Airbag on order, no sign of it yet.

Friday, November 1st

Pharmacy: How is Riley possibly out of Leviteracetam in the middle of the script month?  Refill denied.  Evening voicemail left for help at the neurology office.  7 pm call from the doctor having spoken with the pharmacy… last order was only half filled and an agreement is made to complete the order.

Saturday, November 2nd

Pharmacy: Leviteracetam denied. “Your order has been delayed… We have contacted your insurance carrier so you don’t have to do anything else.”  I hear: “No one knows the hold up, but we would like to placate you now so you don’t bother us any more.”

Sunday, November 3rd

Pharmacy: Pharmacist attempting to clear up Leviteracetam and Budesonide snafus.

Pharmacy automated message: “Your order has been delayed… We have contacted your insurance carrier so you don’t have to do anything else.”  I hear: “No one knows the hold up, but we would like to placate you now so you don’t bother us any more.”

Monday, November 4th

Pharmacy: Do you have Riley’s orders yet? I know you are trying. So what is happening?  Medicaid has determined that Budesonide is for children under the age of eight.  Riley is eleven.

Pulmonologist: Please call insurance AGAIN!  I know you are trying.

Pharmacy automated message: “Your order has been delayed…

Riding: Horseback riding for Riley.  Perfect weather for him.

Tuesday, November 5th

Van: Airbag is in!

Wednesday November 6th

Van:  Up to Fort Myers for the airbag installation.  Make Riley phone calls from the waiting room: What is going on with that Budesonide?  Is there a substitute?  No, there is not.

Respiratory Therapist: Unit is delivered.  Instructions given and demonstrated.

Thursday, November 7th

Jury Duty – all ready behind on having Riley wear the vest.  Jury Duty proves to be a full day event when you are seated in the Jury Box.

Friday, November 8th – 10th

Ventilation Vest: Have catch up to do.  Lots of venting time for Riley.

Volunteering: John photographs the annual Bootstrap Boogie Barn Dance fundraiser for Naples Equestrian Challenge.

Found on Facebook:

John… November 9 ·

“How boring other peoples living rooms must be… take our new addition: instead of an end table we have a new breathing aparatus for Riley that is worth more than both our cars combined! However the hose color clashes with everything so I am just not sure about it! ”

vent machine

Monday, November 11th

Pediatrician, Chiropractor, Ventilation Vest, pool heater fan dying… Where is the Budesonide.  Thank you for finally catching up on Leviteracetam.

Tuesday, November 12th

Budesonide please?

Wednesday, November 13th

School Nurse: Riley does not sound good.  He is expelling lots of fluid.  Coughing.  No fever.  No snotty nose. Conversation goes back and forth.  We are not comfortable putting him on the bus, you will have to come get him.

Respiratory Therapist:  “Perfect, Riley is responding just like we want him too! Don’t keep him home.  This is doing to continue to happen one to two months while he begins to get rid of all the junk he has in his lungs.”

Now how do I convey this and make everyone in Riley’s life comfortable with him?

One Response to Vent

  1. Christine says:

    Oh my! I am so sorry my friend… I can only imagine your frustrations and anxiety; navigating the medical and insurance world is already a bear much less worrying about your child… I hope this is all just a temporary need and Riley can return to his “normal” routine.
    …please call me WHENEVER you need to talk.
    God Bless you all; Hang in there!

    xoxox
    Christine

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