Thursday, June 15, 2017

Another Tessie Update

I am so, so tired right now.

Last Thursday I took this video about five minutes before Tessie's therapy session started:

A few moments after I took this she was excitedly crawling to the door and attempting to go through her therapist's bag to see what she had brought for the kids to play with.

It was field day for Sadie and Patrick, and the second to the last day of school, and I had about a hundred things on my mind when Tessie started to fall down.

She fell from standing.  Then she fell from sitting.  Then she fell from crawling.  Then sitting again.

Her therapist looked at me.  We were both thinking about the letter from the neurologist that I'd just shown her, the one that said that if Tessie began to show uncharacteristic clumsiness we were to take her straight to the hospital where she was to be admitted immediately for an EEG, along with another long list of tests.

"Let's watch her for a few more minutes," I said, silently praying that this wasn't it.  Not today, I said silently.  Paul's in court.  I needed to pick of Patch and Sadie, then rush over to get Maggie.  He doesn't even have his phone when he's in court. What on earth was I going to do?

She fell down to more times in the minute that followed, each time seeming suddenly exhausted as she pushed herself up.

Her therapist helped me wrangle the kids while I rushed around the house throwing my keys and sunglasses into my purse, before hustling everyone out the door.

As I pulled out of the driveway I called the pediatrician's office, realizing that I didn't know exactly where in the hospital I should go.  I had the letter.  Did I need to head to admitting?  No, they told me quickly.  Take her to the ER.

Half an hour later I was navigating valet parking at the ER.  Paul had gotten out of court early and was going to be able to pick up the kids.  I made sure I had the letter and lugged James and Tessie inside.

Tessie's geneticist and neurologist had assured me that if I brought the letter to the hospital it would be fast and easy to make everyone understand that she needed and EEG immediately.  It was neither.

It was an hour and a half before we saw a doctor.  She questioned whether the neurologist had really meant to have her admitted, despite the very clear wording in the letter.  "I'll just call neurology to make sure that's really what they meant." she said, after telling me that she had a daughter and that her daughter was clumsy at eleven months too.

By then Paul had come and gotten James, but I felt totally defeated and was desperately beginning to wish we hadn't come in.  The doctors had stressed the important of the test being done as soon as possible, but things crawled along.  Was there any point to doing it three or four of five hours after the event occurred?

A pediatrician from the hospital appeared just as a nurse poked her head in and told us that Tessie was being admitted for a 24 hour EEG.  They began the long process of going over her relatively long history.  Lab techs came in and took vial after vial of blood.  In addition to the tests the doctor had ordered they were rerunning all the newborn screening tests.

A relatively short while later we went up five floors to her room.

Nine and a half hours after we arrived, Tessie was finally hooked up to the EEG machine.

A steady stream of doctors, nurses, med students, and nursing students were in and out of the room.  They brought in a mat and toys, but Tessie was pretty obsessed with having a TV playing Dora above her bed.

The next day a doctor who I met during our last hospital stay came in and talked with me about a concern that she had.  She felt that Tessie's symptoms fit with a certain condition.  It was very rare, she explained.  One in a million.  Diagnosis would involve a spinal tap.

She spent quite a while explaining why it would be necessary and how it would be done.  I was hesitant, hoping we could avoid it.  And then the neurologist arrived.

It wasn't Tessie's doctor.  He's not yet retired, but he has the other pediatric neurologist do all of the hospital work and he only works out of his office now.  I had never met this doctor.

She came in and briefly examined Tessie.  Then she began to explain to me that babies are clumsy because their brains aren't developed and this baby was perfectly fine.  She instructed the nurses to stop the test, unhook her, and send her home. It was only half done.  

Honestly I could hardly speak.  If you've seen the episodes they clearly aren't normal.  And afterwards she falls asleep and has apnea after apnea.  The first time it happened she had ten in the next hour.

The other doctors paged Tessie's geneticist over and over again.  She was the other person who wanted tests done.  She had requested the neurologist write the letter to begin with.  She could stop the discharge.  But she was already gone for the weekend.

Later when I talked to her on Monday morning, she repeated that the behavior absolutely isn't normal, and she doesn't understand how the other doctor could say it wasn't a seizure when they haven't come near getting an episode on the EEG.  She also wasn't sure how she could disregard the fact that it usually comes immediately before more central apneas.

But she has no ideas left about what it could be, mostly because Tessie's body stays rigid when she falls instead of going limp.  It looks like someone has come up and knocked her over, over and over again, but no one is there.

She asked that I capture one of the episodes on video and if it's alright with me (it is) she'll show it to every doctor she thinks can help to brainstorm ideas.

The clumsiness episodes only happen every couple weeks, however, and honestly when she starts falling over hard the way she does during them my first instinct isn't to reach for the camera.  I am not looking forward to trying to capture it, although I'm certainly going to try.

But what I'm really hoping is that it doesn't happen again.

The apneas continue to decrease.  Honestly I just want her to outgrow it, now, a few weeks before her first birthday.

This, however, is only half of the story.  Because today we were back in the ER (per our doctor's instructions).  And not for Tessie.  But that's a story for another day.  Because this week has finally caught up with me and sleep is going to overtake me before I can finish writing everything I meant to write tonight.

Prayers for Tessie and Maggie are hugely appreciated.  And that the rest of this week goes so smoothly it makes up for the craziness of the last seven days.


  1. You may have thought of this, but do hospitals near you have a patient advocate on staff? It seems like the doctors/nurses who don't actually know Tessie regularly disregard her symptoms. If the hospital does have a patient advocate and you're able to get in touch with the office (and maybe even put him/her in touch with Tessie's doctors), maybe you'll have someone on hospital staff in your corner if you need to bring her in again.

  2. I don't know what to say, except that I'm sorry that you had to go through that ordeal and maybe to have your doctor set up some kind of official alarm in the ER at the hospital that will go off when you daugther arrives so this doesn't happen again. Hospitals have so much staff that communicatiosn is difficult, but this is what computers are for.

    How utterly ridiculous that that neurologist doubted you and the other doctor. Have you consider filing an official complaint? In Spain every hospital has an official called "patient advocate". You can go into his/her office if you have trouble with a doctor or a service befores things escalate or for small stuff and s/he acts as a mediator. Doctors and hospitals are eager to avoid lawsuits so this usually works well. Maybe this hospital has a similar system?

    As for Tessie I can imagine well the fear and incertitude of not knowing what is happening, as I have gone through the same with my dd, but you are doing a wonderful job and will find out eventually. Focus on the fact that she is doing better and that there is nothing in your plate that you cannot deal with.

    Finally, my last piece of unsolicited advice, take care of yourself. Can you afford a babysitter once in a while? I'm not talking having a night in the town, but more like an inunterrupted shower. Also, with dh gone into court at times, a babysitter on demand would be nice. Someone who would meet you where and when you need her and can stay around so you can watch the kids, too, but is an extra pair of hands?

    Thinking of you all,

  3. Hi, I was wondering how Tessie is doing ? Have the doctors checked if she has a metabolic disease ? The results came back negative for our daughter's PHOX2B testing too.


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