Saturday, January 14, 2017

On Trips and Tests and the Unexpected

We were in St Louis last week for MRIs, and after a long unsuccessful night trying to get Tessie to sleep through the test we'd nabbed a few hours of sleep in our hotel before heading over for a morning of behavioral testing. 

When Tessie was around three months old, when the concerns I'd been having since she was around three weeks old began to become apparent to everyone around us, I basically managed to deal with all the feelings that I was having by staying busy.  That business took the form of reaching out to just about everyone who had worked with Maggie over the years, to ask if they had any ideas.

"What would you do?" I asked over and over again, "if you had a three month old with a family history of autism who was actively avoiding eye contact and failing to respond to sounds?" 

She was practicing with ear plugs to get ready for the MRI.
One of our favorite places, the Autism Lab, came up with a list for us of studies that might be helpful.  I plucked three studies from the list and contacted them, unsure if I'd hear back.   After a few days of phone tag and emails I realized that all three studies were going to happen.

Now I had no grand illusions about what these studies meant for us.  I knew that the conclusions from these studies were unlikely to directly benefit Tessie or any of my kids.  But I also very quickly realized that the tests that were done could be helpful going forward, because we live in a world where wait lists are long and they can be even longer when insurance companies have to decide whether or not they're as necessary as the doctors say they are.

Besides that, I'm also nervous going forward about the state of insurance coverage for people with disabilities and so quite suddenly this last fall it became very worth it to travel halfway across the country to have tests done, if it meant those tests were free.

So we flew to St Louis to participate in a large study being conducted by multiple universities, after hours on the phone with the people coordinating the study for Washington University's portion of the study.  The flight and car and hotel were all arranged for us by the study coordinator, and thankfully even gas and meals were covered, and so on Tuesday, Tessie and I set out, flew down to Missouri and after checking in to our hotel and having dinner we went back to our room to wait.

A little before nine we headed to Barnes-Jewish Hospital for the first night of testing. 

For ten days before the study Tessie had been listening to MRI sounds and sleeping soundly through them.  And she's such a sound sleeper, sleeping through dogs barking and her siblings loud playing, and even Paul hammering and using a screw driver in the same room, that I wasn't worried at all about her sleeping through the MRI. 

But she wasn't having it.  She wanted to look at the machine and while I got her to sleep five times she wouldn't stay asleep.  By the time we left, a little after midnight, I was worried that they'd flown us down for nothing. 

This is how wide eyed she was as we left the first day of testing.  After midnight.

The next day there were more tests and I'd been so confident that Tessie would sleep through that first MRI and that we'd be back at the hotel at no time, that I'd chosen an early morning time slot for behavioral testing. 

As I was getting ready to go I missed a call from Paul.  When I called him back I learned that Tessie's Godmother, an amazing woman who had been battling cancer, had passed away (please pray for the repose of the soul of Elizabeth!). 

We didn't have much time for the tears that were freely falling as we hurried back over to a new building near the hospital and went inside for the next round of testing. 

I set down my bag in the small lobby and removed my phone from my pocket and set it on the table.  The office was small and the front door was locked and we were the only ones there.  We were about to go into the testing room when the woman administering the test paused.  "Do you want to bring your phone?"  She asked.  "In case you... need it?"  I said something about feeling kind weird not having it on me, and shoved it into my pocket. 

About an hour into the tests my phone vibrated in my pocket.  I ignored it.  I don't take calls when I'm with therapists or doctors, unless I'm expecting an important call from another therapist's/doctor's office. 

The phone rang again.  This time I pulled it out of my pocket and glanced that the number.

It was a Michigan number and it wasn't one that was programed into my phone.  I asked if it was okay if I answered, and she nodded.

I recognized the voice immediately even though I've never spoken to the kids' neurologist on the phone.  He sees Maggie and James and now Tessie and I usually see him for someone monthly, or every other month. 

Before he said anything I knew it couldn't be good.  He was calling himself.  He has never been the one to call me.  For MRI results, or EEG results, or abnormal blood tests it's always been a receptionist or a nurse.  He had ordered blood tests for Tessie because she was sleeping so much.  Twenty hours a day at four and five months old.  Hypersomnia, said the words printed at the bottom of the paper they'd given me the last time I left his office.

I gripped the phone and waited as he began to explain what the recent slew of test results had told us.

The test results were not normal, he explained.  Did the person who ran the test tell me anything, he asked?

I thought back to one of the oddest conversations I've ever had in my life.  "Did you see anything unusual?" I'd asked as we'd gathered up our things to leave.  "Well, the pediatric neurologist has to look at it." She had said "But don't worry.  Lots of babies have breathing problems and outgrow them."

At the time I'd hoped that meant she couldn't tell me anything and that it was just an awkwardly worded reassurance.  It wasn't.

The sleep study told us that Tessie has Central Apnea.  For whatever reason sometimes while she's asleep, her brain stops telling her body to breath.  And, he explained, they were concerned that she wasn't getting enough oxygen.  More tests would need to be done and she may need to see a pulmonologist. 

I took a deep breath and thought of the three doctor's appointments where I'd said I was afraid that she had sleep apnea, that it seemed like she had stopped breathing in her sleep and I would put my hand on her chest and it would be still and I put my finger under her nose and there was no breath and that I panicked as I touched her forehead and she'd made a huge gasping sound, but the repeated answer had been that her breathing was probably too shallow to notice and she was fine. 

Which was a perfectly reasonable answer because apnea is incredibly rare in full term babies.  I don't blame them for not catching it because from everything I've read it isn't common in babies like Tessie.

But it was also wrong. 

I thanked God silently that the neurologist had said "Do you want to go on guessing or do you want to know?" when I'd told him what the other pediatricians I'd asked about it had said each time I'd brought it up at her regular well baby checks (it had happened three times that I had witnessed).

He went on talking.  There was more.  The results from Mayo Clinic for the amino acid and organic acid were back.  They were abnormal.  They suggested mitochondrial disease and would require more testing.  Could I take her to the hospital there?

"Do I need to do this right now?" I asked.  "Because we're out of state.  Is there any way it can wait until we get back?"  He had me write everything down that he had said to give to the doctor I was about to meet with and then he made me promise to call the office to schedule and appointment and speak with him the minute we got back to Michigan. 

I put down the phone and repeated his words to the test administrator.  She texted the doctor who runs the study and told her what was going on and she came up and I repeated what he'd said, and she explained a few things and said that she would tell her staff that they were to stay all night if necessary because we now really needed the test results. 

The last test was a little screen in a dim room that tracked Tessie's eye movement while she looked at pictures and spinning graphics and then we were on our way, free for the afternoon, until it was time to be back at the hospital at nine. 

My head was spinning.  I took Tessie to the zoo and we walked and walked and walked.

And then we went back to the hotel and lay in the dark room until dinner time and I tried not to google, but did and discovered a study where they found that most people with Mitochondrial Disease apparently also have Central Apnea.

When it was dark we went back to the hospital.

It took longer than usual for Tessie to fall asleep, but she seemed more comfortable in the MRI room.  She had ear plugs in her ears, with tiny pieces of tape over them, and after two attempts at getting her to stay asleep she was wrapped in a blanket on the MRI board with huge ear protector ear muffs over the ear plugs and towels all around her head to keep it still. 

I sat and stared at her chest.  In the half hour that she laid there, waiting to be in a deep enough sleep for the testing to begin, she stopped breathing four times.  And I held my breath with her, watching for her little chest to begin to rise and fall again, each time that it happened.

She went into the MRI tube and I sat in the rocking chair I'd been rocking her in and prayed and gasped every time her feet moved and then prayed more that she would just stay asleep so that they could finish the scans. 

Forty five minutes after she went in she started to kick her feet, but apparently she stayed still enough that the scan was able to be completed. 

They brought her out and she opened her eyes and grinned at us.  The guy who was doing the MRI said "Well, that's a first.  They always scream." as she beamed up at us.

And then we were on our way back to the hotel, a little after midnight, to sleep and get ready for our flight the next day, knowing we'd be back before very long because this study is ongoing and our next trip is at either nine or twelve months.

She's going in to see her neurologist on Monday, which was the first appointment they had with him and I guess we'll find out what's next then. 

In a way I've felt like we're exactly where we need to be as this has unfolded.  I was so certain that every test would come back normal, just like they all did with Maggie (although Maggie has never had any of these tests done, which does have me wondering...).

Your continued prayers are hugely appreciated. 


  1. Dear Cammie...Praying for Tessie, for the Drs to find the best treatments available, and for your whole family. HUGS

  2. Tessie and all of you are in our prayers - for healing and for peace.

  3. Tessie's godmother must have been storming heaven with prayers when you got the phone call from your doctor. I can't even imagine what you must have been going through with the call, and the tests, and being away from home. I know that all of your efforts and prayers will pay off soon. I'll be praying for Tessie too and strength for your whole family as you go through the roller coaster of medical stuff and a search for answers.

  4. Oh Cammie. You must be so scared. To be watching your child just stop breathing...Absolutely I will pray for you and darling Tessa.

  5. Your precious Tessie is in my daily prayer, as are all of you.

  6. I'm praying for you all every morning...for strength and stamina, that you'll encounter the right people at the right time, that you'll have exactly what you need.

  7. Wow, oh wow... thoughts and prayers for you, Tessie and family. People wonder how I handle things around here, but then I wonder how on earth you are not going stark raving mad. ((hugs)) How much I wish I could somehow help in some way, no matter how small.

  8. Oh gosh. I am glad you got to spend some time at the St. Louis zoo, it's one I enjoy. I will keep praying for your family that you can find the answers that can help Tessie. I am so glad the second MRI worked out so well!!


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