Friday, June 16, 2017

The Second ER Trip

I should probably begin with a disclaimer that I should have put into my last post.

Most of the staff at the hospital was amazing when we took Tessie in last week, from the triage nurses, to the ER nurses, to her nurses, the nurse assistants, and the students that spent hours in our room with her.  And three of her doctors (out of five) were fantastic trying to work to figure out what was going on.  There are basically two people from that stay that I am incredibly upset with, but by and large I was impressed with almost everyone we saw last week.

When the hospital called to ask how the stay was I gave them five names when they asked for people who had gone above and beyond.

Still, going back to the ER was the very last thing I wanted to do, ever again.

On Wednesday I was at the lake with the four other kids while Maggie was in therapy.  I'm not quite brave enough to bring all five of them together.  I took Maggie last weekend and we had a blast, and while I'd only planned on taking the other four kids to the splash pad, we ended up down in the lake with three enormous popsicles the kids had somehow convinced me to buy (Tessie thankfully isn't quite big enough to demand her own popsicle yet).

This bit of awesomeness is from my Google albums app.  It made it and then asked me if I wanted to save it and
and I was like "of course, this reminds me of those horrible glamor shots from the eighties
but worse."  And since I was looking for a lake picture here it is for your viewing pleasure.
So no one panics, nothing happened at the lake.
We were headed up to the playground to give everyone a chance to dry off before getting into the car when we heard from one of Maggie's all time favorite therapists.  She was calling to let me know that during the middle of a session Maggie had started giggling and then had stopped responding while her eyes darted back and forth in her head for close to half a minute.

Maggie seemed fine now, a little tired and slower at doing her work, but they'd just wanted to let me know what was going on.

My phone went dead less than a minute later, and so we scrambled back to the car and plugged it into a charger and waited for it to turn on so that I could call her pediatrician's office.  I left a message on the nurse line and hung up, turning the car towards the therapy center since Maggie's day was almost over anyways.


The nurse called me three minutes later.  My favorite nurse. The one who suggested that Tessie had apnea a full three months before anyone else even suggested the correct diagnosis.  She began by telling me that if there was ever an emergency to call the front desk and ask to be put through to the nurse since it could have been an hour between anyone checking the messages.  "Is this an emergency?"  I said.  Honestly after the last week I wasn't sure at all what counted any more.

She asked a few questions and said she'd call back shortly after talking to the doctor.  A few minutes later she'd kept her promise and I had my instructions.  As a one time thing the nystagmus wasn't that concerning.  If it happened again she needed to go straight to the ER.

I needed to call her neurologist, which I'd already done, and leave a message there.  I explained that I had, but that I'd called them too because they called back days before neurology did.

We watched her carefully all afternoon and evening until she went to bed.



And honestly when Sadie called me and said "Mom you need to see this" I was thinking "what did she get into" and not that something had happened.  When I saw the dark dots on the carpet I didn't think blood.  I tried to figure out if she'd somehow smuggled a chocolate bar into her room.

Then I saw her face, covered in blood, with blood dried in her hair.  She'd obviously had a bloody nose.

Now without what had happened the previous day this wouldn't have worried me.  Kids get bloody noses.  Maggie has had exactly one in her life, when she and the hound dog bumped faces and their noses hit.  This was the first one, without apparent cause.

Following what had happened the day before I was slightly panicked when I picked up the phone and called her pediatrician's emergency line.  Waiting twenty minutes until the office opened just didn't seem like a good idea.

I winced when the answering staff told me which doctor was on call.  It was Patch's old doctor, the one who told me that Patch couldn't have allergies (when he did) because babies can't have allergies.

He called back and told me that it was highly unlikely that the two events were in any way related, and told me how to care for a bloody nose.  Then he said that if I hadn't spoken with her neurologist by night time to call back, and that if an episode like yesterday happened again, to go straight to the ER.


So we took her to therapy.  I felt safer with her there, with eyes on her at all time, than I would have if she was running around at home.

I called the neurologist's office and using the suggestion the nurse from the other office gave me asked to speak to a nurse or resident instead of being put through to the answering machine I'd left a message on the day before.

The neurology nurse thought that it sounded like she'd had a seizure the previous day, and a seizure during the night.  He couldn't say for certain, because her last EEG had been normal, but he'd be passing the information on to the doctor immediately.

We were at the gym, where the kids go to a play area they call "baby school," when the call from her neurologist came.  He went over everything that had happened, ordered an EEG, and told me to take her to the hospital if it happened again.  If it happened again he would have her admitted for an emergency EEG.

During the conversation I discovered that he hadn't heard that Tessie had been admitted to the hospital per his letter, and I begged him to pull her chart and look at the half dozen abnormal results that I'd received from the lab since she'd been home.

It was after lunch time when I heard that Maggie had had another twenty seconds of being totally unresponsive.  She's been sluggish all day long, but during this span of time she just stared off into space and couldn't be snapped out of it.

I called the neurology office back.  The nystagmus hadn't occurred, but she had been totally unresponsive.  Take her to the ER they said.


So we went.  Paul was in court and after last week I wasn't about to ask him to take more time off.

Maggie's amazing therapist who was more than an hour away headed over to help me wrangle and I offered milk shakes to anyone who didn't act like a tornado while we were at the hospital.

We trudged into the ER, Maggie and James in the stroller, Tessie on my back, and Patch and Sadie leading the way.  I breathed a sigh of relief when we made it out of the crowded grown up ER into the pediatric ER.

We filed into triage and explained what had happened and then into a room where we told the ER doctor what was going on.  He called neurology.  He tried to get a hold of her doctor.  And he couldn't.

He did get a hold of his office partner.  The same one from last week.  Can you guess where this is going?  Because I did.  I was back in the room praying he got a hold of her doctor and not the other doctor.

The ER doctor came back into the room and explained that he had gotten ahold of my least favorite neurologist on the planet and that she was sending us home with a prescription for Diazepam, to be given if a seizure lasted over five minutes, with instructions to come back if we had to give it to her.

What if she had a shorter seizure?  I asked.  What if it was only two minutes?

Just write it down and make a note of it for the next appointment.  I was handed a paper that said to make an appointment with the office partner, and the words "that's never ever going to happen" slipped out of my lips.


"I wish they hadn't sent us in today." I told the ER doctor.  "Why send us here just to send us home."  To make sure she's acting normal, he explained.  I could have done that.  Anyone who knew her could have done that.

I called her therapist who was still on her way and told her the news, and that we were going to be headed home with the Dizepam.

When her neurologist retires we'll be going to Ann Arbor or Grand Rapids.  I will never willingly have a child seen by that other doctor after these two experiences.

So we went home with a child who'd likely had three seizures in the previous twenty four hours, feeling sick to my stomach as I filled her prescription.

And so now we wait and watch her.  Hopefully I hear from the office to schedule the EEG very, very soon.  Tessie has her follow up today, with Maggie's actual pediatrician, and I'm going to be filling her in and making a follow up appointment for Maggie there as well.  And adding Diazepam alongside the epi pens that come with us everywhere, while praying that I don't have to use it.

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:

video

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.

Tuesday, May 30, 2017

The Best Answer: A Tessie Update

I ended up rambling through all the questions we still have, but if you want to skip it and get straight to the main point of this post, the whole of the very, very good news we got today is in the first three paragraphs.


I was just about to get into the car this morning, at a few minutes after seven a.m. when my cell phone rang.  I thought that it was Maggie calling on her GPS from her car seat directly behind my seat, but when I looked down it I saw a number I didn't recognize.

When I heard Tessie's geneticist's voice, I froze.  We haven't had enough experience with her to know what sort of a doctor she is.  Does she only call for very bad things, while a nurse calls with the good news/normal results?  That's how the majority of Tessie's doctors are and the next ten seconds felt like hours until I heard her say that the test results were normal and that they did not show a mutation on the PHOX2B gene.

I was elated.  Paul had no idea why I was giving him a thumbs up from where he sat in his own car, and I'm sure I was grinning ridiculously with relief.

But then I had questions.  And things that I'd been mentally filing away, that I needed to tell her.



Amazingly, she took a half hour to talk with me and go over everything that's happened recently.  I told her about how Tessie had a rough week last week and had a hard time sustaining her oxygen levels at night while she was sick.

And I explained that I've noticed that she has apnea nights and then there are the nights when she has low oxygen saturation levels without apneas, where the monitor says that she's breathing faster than normal, and that her heart is racing but that her oxygen levels are falling, going up when she wakes up and then back down as soon as she goes to sleep.



Lastly I finally remembered to tell her how we've noticed that Tessie gets really, really clumsy right before she starts having apneas.  The first time I really noticed it was when we were in a baby play area at a museum.  She was sitting up and kept falling over, despite being really good at sitting at that point.  When we got in the car she immediately fell asleep and had apnea after apnea for the next hour until we were finally home and out of the car.

It's become predictable now.  If she's clumsy or very, very tired, she's going to have a bad night.  If she misses a nap, she's probably going to have a bad night.  If she misses both naps, the alarm is going to be going off over and over again.

I've given this description to three of her doctor's now.  When I told her neurologist he gave me an order for an organic urine test to hopefully eliminate something called intermittent maple syrup disease.  The pediatrician thought it sounded like mitochondrial disease.

Her geneticist said that she hadn't heard anything that pointed to mitochondrial disease at this point, but that we need to find a way to do an EEG immediately after the clumsy episodes start to see if she's having seizures.  She said that she felt like we were actually incredibly fortunate because the clumsiness is such a good indicator beforehand to help us pinpoint when to do the test.

Falling asleep in the middle of playing in the play room.
That it's a good indicator is kind of true and kind of not, as the organic acid lab slip has proven to me.  Since I got that test I've waited to take her in, waited for a moment that is indisputably clumsy.  If she falls over is it because she's learning to stand, or is it the clumsiness before a bad night?  If she topples over twice is it a coincidence?  I've been so afraid that I'm going to pick the wrong moment, the wrong bout of clumsiness, and as a result miss something important.

She asked me to call the neurologist and see if I can arrange it so that the next time Tessie has a clumsy episode she can be admitted to the hospital for an immediate EEG.  I left a message at the neurology office relaying the suggestion.  They aren't particularly speedy at returning their calls though, so it could be a while before I hear back.

Even with the additional questions that are unanswered, this was the best possible news.  We've now eliminated heart problems, a brain stem problem, and CCHS as the causes of her central apnea. When she was in the PICU those were the three explanations that were the most terrifying.  The apneas have already decreased hugely from where we started.  Unlike with the MRI, where this test was still hanging over our heads, I actually do feel relieved.



Thank you for all the prayers.  I am so incredibly grateful to be able to share this news.  After five months of worrying about this particular cause, we can finally put this most frightening of questions to rest.

Saturday, May 27, 2017

A Tessie Cold

Last week Tessie had a cold.


It wasn't a bad cold.  She didn't have a fever.  She'd have a few coughing fits a day, but they weren't bad and her nose was runny but not particularly stuffy.  She could suck on her thumb and still breath.

The first night the alarm went off, telling me that he oxygen level was below 89%.  I looked down and saw the red light on the right hand side over the falling number and picked her up.  She woke up and started to nurse and the alarm went off.  As she drifted off to sleep I put her back in her bed.  Within minutes the alarm went off again.

It happened a few times before I took the sensor off and got out a new one.  As soon as she fell asleep it happened again.  She had little coughing fits almost immediately after the alarm would sound.  When she'd finally drift off I could see that she was breathing a little fast, 31 respirations per minute, but not as fast as it sometimes is.

After a long night I figured that it was probably a fluke.  She has bad nights now and then, but they're less and less frequent.  If she has one bad night it's likely she'll go a week, or even two now, before she has another.  And it wasn't like she was having apneas.  She hadn't stopped breathing once.


The next night came and exactly the same thing happened.  This time I looked at her closely.  The oxygen monitor said her oxygen was in the 70s, but she wasn't purple or blue, which her pulmonologist had said she should be if her levels were really that low.  Again it went back up when she nursed and then began to go off over and over again when she'd go to sleep.

And then the night after that we repeated it for a third time.  I knew then that I needed to call the doctor.

We had an unusually busy day lined up.  Dropping off Sadie and Patch.  Speech and OT and then rushing Maggie over to her therapy place.  A couple errands and then picking up Patch and hurrying to a doctor's appointment.  As soon as that was over we were supposed to pick up Maggie and drive her back to next year's potential school for the second half of a speech evaluation.  That left us just enough time to get back to pick Sadie up when her school got out.

That meant that if her doctor wanted to see her it would likely be in the afternoon, and I would have all five kids.  Paul had court, so I was on my own.

And which doctor should I call?  I knew there was a good chance that the pediatrician would say "sorry call her pulmonologist."  I didn't have time to drive two hours each way to the pulmonologist's office.  Beside's wasn't this a cold?  Hardly worthy a trip to a specialist.  


I silently hoped that her pediatrician's nurses line wouldn't tell me to call the pulmonologist and I left a message explaining what was going on.

And they called back and said to bring her in at 3:45 for a 4 o'clock appointment.

Thankfully Paul got out of court early and was able to arrive at 3:44.  We hurried inside.

The pediatrician examined her and made sure that she didn't have pneumonia.  Her lungs sounded great.

And then he explained that while the sleep studies say that she only has central apnea, he suspects that there's more to it than that.  He thought that for whatever reason she didn't have the energy to breath because of the cold, so that even though she was just a little sick it was causing her to repeatedly stop breathing or breath too shallowly.


I asked if that would explain why she has more apneas when she's in the car, and he said that the position in the car seat makes breathing more difficult and that it was basically the same idea, that for whatever reason (he suggested mitochondrial disease again) when it's more difficult to breath she just doesn't.

I have noticed that on days when she's especially tired (like if she skips a nap) we're much, much more likely to have apneas all night long.  If she's well rested she usually sleeps soundly all night without a problem.


She's almost completely better and the last two nights she's slept peacefully without a problem.  But I'll admit I'm far more nervous about her getting sick now, if this tiny cold affected her so dramatically.

But at the moment she's back to bouncing off the walls.  Tonight she put her face in the water in her bath (on purpose) three times, and then laughed about how daring she was being.  And she's growing so fast!  Here's a glimpse of our big girl going on the swings today for the first time:

video

Wednesday, May 24, 2017

Molly Loves You and Other Amazing Words

Sunday night, Maggie had already gone to bed when Sadie's bedtime rolled around, but she hadn't quite fallen asleep yet.  She was wrapped up in a quilt when she looked at me and said "Molly loves you."

Molly is her favorite Bubble Guppy and "Molly loves you" is something she's begun saying that I've suspected for the past month or two is the equivalent to her saying "I love you."

"Mommy loves Molly!  Mommy loves Maggie!"  I said back as Sadie climbed into her bed.

Then Maggie paused, looked at me, and in a clear little voice said "I love you."  



It isn't the very first time she's said it, but it's one of the first time she's said it when she hasn't been echoing back the exact words that she's heard.  When she says "love you" when she goes to school she's basically saying "please go mom."  

There have been a few times, over the years, that she's echoed back, "I love you" after I've said it too. But this was the first time that she initiated saying it on her own instead of repeating it, which made it one of those super memorable moments that I want to store away in my memory exactly as it was.

Tuesday, May 23, 2017

Finally Family Fun Night


For most of the last decade, Paul was gone on Friday and Saturday nights.  Before Sadie was born he worked 48 and 72 hour shifts at a group home, which meant sometimes parts of weekends were free, but often times he was gone.

After that he began grad school, with a program that took him almost 300 miles away on weekends (besides working nights during the week).

Then law school began and between studying in the law library, and then working as a doorman the last two years of school on just about every weekend, he was hardly ever home on Friday or Saturday nights.  This last year, when he started his own business he kept working as a doorman on weekends.

I was pretty elated when he got the new job and I discovered that for the most part, on Friday nights, Paul will be home.



And so I finally declared Friday "Family Fun Night" and began planning.


The nights usually include a meal I know they'll like.  When I'm feeling really energetic I plan something that the kids can help make, like pizzas that they can decorate, or banana floats that they can help build.


 On other nights (like kebab night) everyone else was out in the living room while I threw everything together and brought it out.


Banana Split night, barely beat out Root Beer Float night as the kids' favorite.

It was unique in that instead of being dessert, the banana splits were dinner.  It only happens once, or maybe twice a year, but it's definitely a memorable night for everyone.  And it was fun to see which toppings everyone picked for their creation.


Every Family Fun Night so far has ended with a movie downstairs in the playroom, but some have included games too.  Like this wiggly worm ringtoss (it can be a challenge to find games all the kids can play):


Family Fun movie time has convinced me that it would be very, very nice to have a sectional down in the basement.  Because right now there's a huge amount of competition for the "best" spot on the couch.  And on the floor.


And I don't think I've ever been more grateful for Pinterest for ideas, even if our nights aren't quite Pinterest worthy in and of themselves.  They are definitely fun.


Monday, May 22, 2017

Flexibility and a Good Mistake


Last week I made a huge scheduling mistake.

It may not seem like much, but it had the potential to ruin our entire day, and throw the whole week out of whack.

Wednesday is our hardest day of the week, because Maggie has OT and Speech and then we rush over to her therapy center.  It isn't making it from one place to another that's a challenge (it's tight, but we have just enough time).  It's remembering that it's Wednesday and that we have to go to the autism center instead of the therapy center, before we've missed the early morning session.

I have an alarm on my phone to keep me from forgetting that it's Wednesday, after losing track of which day of the week it was more than once.


This particular Wednesday we made it to speech and OT, but when we arrived at the therapy center one of my favorite scheduling people looked up and spotted us.  "I don't have you scheduled until twelve today." She said and then I remembered.

One of Maggie's therapy techs had the morning off and they had called me a week earlier to let me know.  Scheduling had been trying to cover the spot, and thought they might have found a substitute and I'd been waiting to hear back, until I completely forgot that the day had arrived and I'd never gotten the call telling me they'd found someone.


This meant leaving the center.  The office staff looked at me anxiously.  We all knew how bad this particular schedule change could be.

Maggie loves her school.  She sprints in, greets her therapist and says "bye, bye, love you!" to me over and over again, obviously anxious for me to leave so that she can get to work (and play).  She giggles her way to the door every day.

The last time her session was canceled when we arrived she sobbed for much of the rest of the day.



She whimpered when I told her that I'd made a mistake and we had to leave.  She made a small sad sound as we walked to the car and as I strapped her into her carseat.  And I explained to her that I had made a mistake forgetting that she didn't have school until later, but that we were going to make up for it by going to do something fun.

After running a couple errands we went to the zoo.

At the zoo she continued to demonstrate how much she's grown in the last year.  I had to remind her every minute or so to stay with me.  About 80% of the time though, when I asked her to slow down and walk with me, she would.  The other 20% of the time we held hands as a reminder.

And she had a blast.


Letting go of her hand in a crowded zoo (there were five buses there and the parking lot was full) would have been unthinkable a year or two ago.  She has made such amazing progress.

And so that little scheduling error I made turned out to be not such a bad thing.  We returned to the center at lunch time, triumphant and when her favorite therapist texted me to ask how she had done I was able to text back a beaming picture of her having a blast on our little impromptu field trip.

No, it wasn't such a bad mistake after all!

Sunday, May 21, 2017

A Tessie Update: The Bad and the Good

I just about had a nervous breakdown in the kitchen when I opened the packet that had arrived from our insurance company with Tessie's name across the front, even though I knew what it was already going to say.  Only denials are that thick.  They don't send out twenty pages of explanation when they tell you that they're covering something.  



When I read the reasoning I was even more enraged.  The insurance company had determined that testing Tessie for an abnormality in the PHOX2B gene would not change her treatment.  Therefore it is considered unnecessary.  

Not change her treatment?

I'm surprised a blood vessel didn't explode in my brain.  

Through all of this, for the most part, I feel like I've stayed pretty calm.  Even when I felt like I was having a panic attack in the shoe aisle of Walmart when I got a call from the pulmonologist's office telling me that the company (who I'd talked to on the phone and who had assured me that they had baby apnea monitors and also would service the area that we live in) had faxed back the monitor script with "not in stock" written across the top, it was more of a shaking hands, stabbing chest pain sort of thing, while I stood there wondering what to do next.  

This was a shaking hands I want to throw something across the room (like the letter if it was only heavier) sort of anger, that I struggled to resist.

Now since you likely haven't talked to a dozen doctors about this gene, let me explain.  

The standard treatment for Congenital Central Hypoventilation Syndrome, in a baby, is being put on a ventilator every time they go to sleep.  According the her pulmonologist and the PICU doctor that first saw her when she was admitted to the hospital, if a baby has this gene they usually require a tracheostomy to ensure that they don't stop breathing and fail to start again.  

Tracheostomy (or one of the other treatments) versus no tracheostomy but continued monitoring is kind of a huge difference in treatment in my mind.  

This is the thing that we've been desperately hoping that she doesn't have.  Out of all the causes for central apnea this was one of the very worst.  This was the reason I couldn't really relax when the MRI came back normal.  Because which was worse?  Getting the results for this test, and finding out that she doesn't have the mutation, would be an enormous relief.  

And while she has been having less and less instances of apneas and low oxygen levels, it still happens and her geneticist was adamant that this test needed to be done.

So we began sorting through the packet and looking at the appeals process that Paul would begin to undertake.  I wondered if the insurance company would change their mind when they realized that Paul, who was taking over challenging the refusal, is a lawyer.


At night when I laid in bed and worried, I wondered if the insurance company had refused the blood test because they didn't want to pay for the treatments if it came back positive.  A cynical part of mind wondered if refusing the test, which leads to no treatment, which increases the chances of an infant who has this gene dying, doesn't make more sense to a company who's looking at the bottom line.  Rather than pay for a tracheotomy and ventilator just don't pay for a test and you don't have to worry about covering the rest.

I like to believe that even insurance companies aren't that horrible, but experience makes me wonder.


And then the call from the geneticist's office came.  She said that Ambry had agreed to cover the entire cost of the test.  I almost fell over.  Had she called the wrong family?  That isn't the name of our insurance provider (thanks McLaren, in case you were wondering).

It took me a moment to remember the request form that had accompanied the other papers that I'd signed that asked for the genetics company to cover part, or all, of the test if our insurance company refused.

I cannot even describe what a relief it was.

It didn't matter if some paper pusher in an office somewhere had been ready to deny potentially lifesaving testing, and as a result treatment to an otherwise healthy baby who happens to stop breathing and sometimes not start again, because the test company had saved the day.

The doctor's office explained that they would be sending out the sample collection kit, and at what time to go to the lab to have it taken so that it could be sent out immediately by FedEx.


And Monday morning we did just that.

On Friday the genetics company called and told me that they had received the sample, that again, the cost would be zero, and that they would begin processing it now.  It's estimated completion date is June 16th, which isn't bad for this sort of test (Maggie's genetic tests took about three months to come back).  And I thanked the man who called profusely and told him what a huge relief it would be to know once and for all whether we had to worry about this.


And that is the latest.  Hopefully the apneas continue to grow fewer and fewer until they're gone altogether.  She's been doing so good for the last few weeks and then last night the alarm went off over and over again, telling us her oxygen level was between 87 and 89%, until I picked her up and laid down next to her and read so that I wouldn't fall asleep and would be right there when it went off again.

We'll keep praying that this test, like the heart and brain tests, come back normal, or at least normal enough to not be a concern.  Hopefully it will only be a few more weeks before we know.

Saturday, May 20, 2017

Finally Laid to Rest

In November we began making trips to our local Catholic cemetery.  

It was still fairly warm at the beginning of the month and we had a large break in the day between the time I picked up Sadie and Maggie from school and the time when Paul would meet me and take the kids home while I took Sadie to her ballet class.

I'd always wanted to do something to set the month that begins with All Saints and All Souls Days apart, but getting out of the house with all the kids on my own meant it was something that was put off, for years, until this year when we were already out, in the car, and it occurred to me that going to the cemetery and walking around and saying a rosary might be a good way to mark this time of year when we especially remember the souls of those who have passed from this life into the next.  

The idea was met with unexpected cheerfulness from the kids who thought getting outside in this wide open new space was a great idea.  The first time I did it I struggled with logistics, but over time we got better at it, and when it was very cold we would drive slowly in the car, past the stations of the cross and the large rosary stones, and pray with the windows rolled up and the heat blasting.  

The visits didn't stop at the end of November.  We didn't make it every week, but at least a couple times a month we would go.

And all the while an idea was growing, pressing in my mind, of something that we needed to do.  

Christian Athanasius was our tiny second trimester baby who was born into heaven in 2011.  He was cremated when we lived in Florida, but I couldn't bear the thought of having him buried there, so far from us, knowing we would rarely, if ever, be back.  


Then we moved to Michigan in 2012 and Paul was still a student.  We liked Michigan, but did we really know where we would end up?  

We would bury him soon, as soon as we knew where we would finally be settling down.  

Then Paul passed the bar.  And we moved into a house we loved.  

But life was busy.  So very, very busy and time began slipping by so fast.  Last year we had some 80 doctors appointments and well over 300 therapy sessions and there was hardly time to think.  And how much would it cost?  I knew from a friend that some cemeteries do charge to bury tiny babies while others don't.

Still, as we went to the cemetery each week the idea grew until in January when I brought it up again and we went to our priest and spoke with the people at the cemetery and began the process of getting the funeral home to fax up a death certificate, because the one I have is still tucked away somewhere and I couldn't find it since we still aren't entirely unpacked from last years move (the challenge of moving while 9 months pregnant and then unpacking while hardly ever home).  

On March 3rd we made the trek out to the cemetery.  It was a cold, windy day, and the kids were bundled in their snow clothes as we piled out of the car and waited for the priest from our parish to arrive.  

Then we walked to the small section of the cemetery known as the baby section.  And we finally laid Christian Athanasius to rest.









A lady who works at the cemetery helped us wrangle James, who refused
to hold my hand but proudly held her hand while crossing the street to the site.



It was a beautiful service and the words struck my heart, so strongly and yet so differently than I'm sure they would have if we'd managed it five years ago.

At the same time it was such a relief to finally have it done.  

Now when go  to pray the kids were excited to visit the spot where we had officially said goodbye to Christian.  

We stop and bring flowers and then walk down along the river and pray and the boys point out every balloon and flag and new bouquet of flowers that catches their eyes.  They talk about having a brother in heaven.




After persistent questions about why Christian's tiny space wasn't decorated we went to Hobby Lobby and fixed that as well.



And I began to stow away money in a little box, until we finally had enough to go back and buy a grave stone.  The day the proof arrive we confirmed that it was what we wanted:


We went back, over the next month, waiting for it to arrive.  And finally, on Mother's Day, it was there:


Seeing it, having a place to visit and knowing that he had been buried has been healing.


I can't help but feel that the gift of going to pray for the souls of people we've known and loved, and friends of friends, and all those who've gone before us, has given me a greater peace than I could have imagined possible back when I was writing about saying goodbye to Christian and the health problems that followed back in 2011.