Friday, November 10, 2017

Roller Coaster Weeks

I'm laying in bed listening to the hum of the oxygen machine that arrived earlier today, feeling thankful that I shouldn't have to tell anyone that they can pry Tessie's breathing monitor out of my cold dead hands, for at least three to six more months.

The last month has been a roller coaster of sorts.

It began the first week of October when Tessie went in for a sleep study.  

During the sleep study she had 15 central apneas.  For anyone who's new here, that means that fifteen times her brain stopped telling her to breath for more than twenty seconds. 

But fifteen apneas, with desats that only went down to 88 was not enough, according to the insurance for her to keep her monitor.  

The nurse who called told me this in a cheerful voice.  It was great news.  I should be excited.  No more plugging in cords and turning on machines.  

She did not expect the sheer panic of my response.  I told her this story.  I told her how she had stopped breathing twice during the summer, after weeks and weeks without an incident, and how I'd had to turn her over and rub her chest to get her to breath again.  

I told her I was terrified to lose that monitor.  

She said she'd call me back.

Another nurse called me a few hours later.  She'd talked to the doctor and the doctor was clear.  Tessie didn't need a monitor anymore.  It was standard protocol for a baby with only 15 apneas a night.  Most babies, she explained, were off the monitor at six months.

This baby was diagnosed with severe central apnea at six months, I said.  

In the following days we begged and pleaded and argued.  Don't call the monitor company.  Give us time.  Let the insurance deny it.  Let us fight the insurance over it. Her neurologist agrees she needs to be on it still. Paul called several times and the pulmonologist made it clear: this was protocol and nothing could be done.

I was frantically making calls and leaving messages, first on Tessie's neurologist's nurse line and then with her pediatrician.  The nurse at the pediatrician's office called back twice, and the second time we spoke she suggested I bring her in and talk to the doctor in person.  

I kept missing the pulmonologist's calls while running around getting the other kids to their schools, and therapies, and activities, and I still hadn't spoken with her two days later when I went in to see Tessie's doctor.  

I had dodged several calls from the medical supply company asking when they could pick up the monitor.  

I went in to see how much apnea monitors cost and I sat in the office sobbing when they told me that her monitor was $10k and that it was billed as a service (unlike some machines where insurance payments can ultimately lead to the patient owning the machine).  They wouldn't take it away, they assured me.  I would just have to pay for it.  And the quote put it very much out of reach.

I went in to the appointment feeling hopeless, but also determined that I was going to make every possible appeal to keep the little monitor that beeps when she stops breathing for more than twenty seconds.  

Her doctor called the pulmonologist twice while we were the office and we sat in the exam room and waited for the pulmonologist to call back.  We talked about my fears.  He said that the pulmonology nurse had told him that they weren't worried about Tessie because once a baby who had central apnea as a result of prematurity is down to 15 apneas a night, the apnea is resolving and isn't a problem anymore.  

"But we don't know that she has apnea as a result of prematurity." I said quickly, quoting his own words back to him.  At every appointment, with every specialist and doctor she would see I would always ask "is it going away" and they would always say the same thing and now those words came rushing back to me. "She was 8 lbs 12 oz and full term and I keep asking every doctor she sees if they think it's neurological immaturity and if it will go away eventually and everyone tells me the same thing: we just don't know."  

"We're on the same team here," her doctor assured me.  And he promised to call when the pulmonologist called him back.  

He did.  And in the two minute conversation he had with her pulmonologist he had more information than I'd gained in months of appointments.  

The pulmonologist had said that when apneas decreased to the frequency that Tessie's were at they were going away when they were caused by prematurity.  Her pediatrician had asked if her apneas were caused by prematurity.  We don't really know, the other doctor said.  We don't know for sure that this doesn't have something to do with the brain hemorrhage that she had.

I nearly fell over.  

I'd been asking the same question for months and had been told over and over again absolutely not.  It couldn't be the brain hemorrhage because it "wasn't clinically significant."  

Maybe the two were entirely unrelated but as a layperson it certainly felt suspicious.  Not that it would make a difference. Tessie's brain hemorrhage very likely happened before she was born and it is what it is.  

He told me that he was going to write a prescription for a monitor and that the pulmonologist had agreed to order another sleep study. 

"Her pulmonologist says that if this one is normal than it's a 99.999999% chance that there's nothing there to find."  

I thanked him and hung up the phone.  

Earlier this week, before we made it to her sleep study which had been scheduled for this Saturday, it happened again.  Tessie's alarm went off seven times in a fifteen minute span.  Five of those times she started breathing again on her own.  Twice she didn't.  This time I didn't have to flip her over.  I just had to rub her back hard until she gasped and shifted herself around and went back to breathing deeply as she dreamed.  

"Don't hesitate to take her to the ER," the pulmonology office told me.  "But I do," I explained.  "Because we've been to the ER for this.  For not breathing.  For seizures.  And yes they're terrifying when they happen.  But then she wakes up, and she looks fine and I take her in and they look at her and say 'why on earth did you bring this perfectly healthy baby to the ER.'  So I do hesitate."

They bumped us up to Thursday.

So I worried my way up to last night when we went in for the sleep study and Tessie tossed and turned and fussed and complained about the nasal cannula.  And I stared at her half the night and listened to her perfectly regular breathing and I knew, I just knew, that she had had a spectacularly uneventful night.  I didn't even hear a single apnea this time.  

She had already had one of her rare scary monthly events.  And we'd already met our monthly quota.  

They hadn't seen what I needed them to see.  

I was folding laundry at home when the pulmonology office called.  To tell me that she was perfectly fine and didn't need a monitor, I thought.  

Instead the nurse delivered news I honestly had not expected.  

Tessie had had central apneas.  She'd had desats down to 82%.  She needed to be on oxygen at night.  The medical supply company would be delivering it immediately.  They'd already sent the order in.  

They would order another sleep study in three to six months, she said. 

Six, I thought.  I'm going to be pushing for six, and not just because sleep studies are pure torture with a toddler.  

And for the moment, I am relieved, because for now if she stops breathing an alarm will sound and I'll know about it.  

Hopefully in six months she really won't need it.  And if someday she really doesn't need all these wires and tubes, I will be ecstatic.  I will be overjoyed.  

But until that day I will be holding onto that monitor with every bit of energy left in my body so that I know when she isn't breathing, so that I can help her start again. 

With the help of a 1/2 liter per minute of oxygen, even if Tessie does firmly believe that nasal cannulas are the worst invention ever made.



  1. Oh my goodness, Cammie!! What an awful rollercoaster. Praying for you!

  2. Praying for you all. I'm so glad you were able to get the monitor but what an ordeal. It really shouldn't be this hard.

  3. You may find the oxygen actually helps her to continue breathing. My elderly mom was prescribed an oxygen concentrator to use just at night, and after she got it I noticed she stopped having apneas while sleeping. I think the flow of air into her nose helped like a CPAP machine. It was enough to solve the problem. (I used to take a strange comfort in the sound of the oxygen concentrator (whizz-slap, whizz-slap, whizz-slap) while my mom was sleeping. I was able to relax and stop listening for her gasping/"snore" if she had an apnea.)

    We "rented" the concentrator from a medical supply company, but they would not let us ever buy it. I often considered buying a used one if they ever wanted to take it back.
    You might start looking around and keep an eye out on eBay and Craigslist for a breathing monitor and/or oxygen concentrator. You also should search for auction sites for hospital closings nearby, searching under "hospital auctions", "surplus medical equipment", "medical liquidations". I was able to buy a few medical related items like a Hoyer lift for a fraction of the cost of new from one of these places. (Beware, sometimes they sell in a "lot" and sometimes the item is on it's last leg and not even worth the money they want.) These companies will often sell to you, even if normally the item requires a prescription. I never looked for one of these monitors, so I don't know what might happen if you try to bid on one.

    What I am saying is see if there is a way you can get one of these monitors for a fraction of the cost of new, or something that will work as well, from sources not through a doctor. For instance, perhaps there are places that use a similar device to measure or monitor breathing, like a sports medicine place or gym.

    Think outside the box!

    God bless. ~Bonnie


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