Saturday, February 18, 2017

A New Sleep Study

I originally wrote this as a Facebook status update, but realized as I finished it and posted it on my personal page that it is basically a blog post in length. And it's an update as to what has been going on these last few weeks while I've been waiting and stressing and silent here. Here it is in all it's Facebook glory:



Finally! Tessie is making the drive to the children's hospital two hours away on Monday to be seen by their sleep specialist/pulmonolgist.

 It wasn't easy getting here. A month ago her pediatrician told me she wanted the doctors at the children's hospital to see Tessie and that she was going to call a friend who worked there and see what he thought and then make the referral. She said she would do it by Thursday.

 Thursday passed, and when I still hadn't heard anything a week after that Thursday (giving referrals a time to go through) I called back. She had talked to the doctor and they wanted to see Tessie, but had forgotten to send the referral through. If I didn't hear back in a week from the hospital I needed to call back.

 Another week passed without hearing anything. I called back. The referral had been sent to the wrong hospital. Whoever sent it through didn't look closely at the destination and sent it to the hospital that did the last one. I managed to convince that hospital that we didn't need to schedule when they called and was told by Tessie's doctor's office to wait another week for the referral to go to the right hospital.



 Wednesday was a week from the last time I had heard from the office. On Thursday I called back. I found out the referral person had been sick for a week and the referrals hadn't been sent through. 

They would put it through as soon as possible.

 I explained Tessie's whole story. I told them the first sleep study showed that she had 45 central apneas and over 100 hypoexemias (I think it was 130, but who's counting at that point) and that while she'd had no events in the hospital (possibly because alarms literally went off every ten minutes the entire time she was there) I'd gotten a home monitor and that the home monitor informs me 2-4 times an hour that it senses "low movement" with a cute little picture of lungs framed in red. I have no idea how accurate the monitor is, because it isn't a medical grade monitor, because if our doctor prescribed a medical grade monitor she would have to formally diagnose her with central apnea and if she diagnosed her with central apnea the insurance would refuse to cover a second sleep study right now. 

We got the monitor after I saw her stop breathing for at least 18 seconds. Which is not quite long enough to count as an apnea but is enough to make it pretty hard to sleep. Ever.

I said that I was really, really worried.

Yesterday the children's hospital received the referral and called. They will see her on Monday at 12:30. However the scheduling person told me that right now they're scheduling into the end of March for sleep studies.



Say a prayer that they find a way to get her in earlier than that. And that the studies in the hospital were correct.

The last month has been a roller coaster and I'm ready for answers (good ones!).

She seems so much better. She's hitting all her developmental milestones now, even the ones that were way, way behind before. She laughs and smiles and looks at our eyes. She says mama and dada and loves playing with the older kids.

I just really, really want to know for sure that she's through this and that I don't need to jump up four times an hour when my phone tells me that low movement has been detected.


Sunday, January 29, 2017

What Must I Do?

Luke 10: 25-37

There was a scholar of the law who stood up to test him and said, “Teacher, what must I do to inherit eternal life?”

 Jesus said to him, “What is written in the law? How do you read it?” 

 He said in reply, “You shall love the Lord, your God, with all your heart, with all your being, with all your strength, and with all your mind, and your neighbor as yourself.”

He replied to him, “You have answered correctly; do this and you will live.” 

But because he wished to justify himself, he said to Jesus, “And who is my neighbor?”

Jesus replied, “A man fell victim to robbers as he went down from Jerusalem to Jericho. They stripped and beat him and went off leaving him half-dead. 

 A priest happened to be going down that road, but when he saw him, he passed by on the opposite side. Likewise a Levite came to the place, and when he saw him, he passed by on the opposite side. 

 But a Samaritan traveler who came upon him was moved with compassion at the sight. 

 He approached the victim, poured oil and wine over his wounds and bandaged them. Then he lifted him up on his own animal, took him to an inn and cared for him. 

 The next day he took out two silver coins and gave them to the innkeeper with the instruction, ‘Take care of him. If you spend more than what I have given you, I shall repay you on my way back.’ 

Which of these three, in your opinion, was neighbor to the robbers’ victim?” He answered, “The one who treated him with mercy.” Jesus said to him, “Go and do likewise.”


Thursday, January 26, 2017

The CD of the MRI

While we were in the hospital the doctors really wanted to be able to see Tessie's brain stem.  That region of the brain controls breathing and since no breathing was the biggest problem that she was facing, making sure that part of her brain was normal was a big deal.  

Thankfully she had recently had an MRI, without sedation,on our trip to Missouri.  

I called and spoke with the contact person for the study and she explained that the doctor who could release the CD was out of the country, but they had an urgent call in to him and were waiting to hear back.

Many times the necessity of having another MRI done was discussed.  It would start with various doctors who'd come to examine Tessie explaining to me that it was likely that the images from a research study wouldn't be as well done as the ones they would need and so we would have to do it over again.  I would nod.  Then they would say, "but putting a baby with central apnea under general anesthesia can be very dangerous.  Because of the breathing."  

Because she might stop breathing, my brain would fill in.  


"So we can wait for the CD and see what it says." was the conclusion reached over and over again.  As long as she continued to do well, we could wait.

Yesterday it arrived.


I'd gotten a phone call from her neurologist's office asking me to bring it in the moment I got it and ask for K-.  K would take the CD and make a copy and then I could keep the original in case any of her other doctors wanted to see it.

The minute we got it I loaded the kids in the car and headed to the neurology office, stopping to pick up Paul on the way.

I'm not sure why what happened next was so amusing to me, because on another day I think I would have been frustrated.  Maybe because it feels like we've been through a lot and so it seemed fitting that dropping off the CD wouldn't be as simple as it probably should have been.

Here's what happened next.

Me: "Hi.  Is K- here?"
Receptionist: "K?"
Me:  "Um... K, Dr. D's... person?  She called and said to bring this in and ask for her so that she can make a copy of it?"
Receptionist:  "Oh!  K.  I'm not sure we can make a copy.  Let's see. She was supposed to go home early today but let me see if she's still here."  (disappears and then reappears a few minutes later)  "Okay, so here's what we'll have you do.  I'm going to point you in the direction of radiology.  You take that down to them and they are going to scan it and upload it to the system so that he can see it right away."

Five minutes later having traveled down to radiology and waited in line.

Me:  "Hi, neurology just sent me down here.  We have this MRI for my daughter and they said that you guys would scan it in so that the doctor could see it."
Receptionist (makes phone call and repeats what I just said, says "okay, thanks." and hangs up the phone:  "Actually we can't do that.  It's actually in violation of HIPAA law. If she'd already had a scan here we would be able to do it.  But she hasn't.  Even though she's in the computer.  So we can't do it."
Me:  "Yeah... she's in the computer because she was in the PICU last week.  They couldn't do an MRI because she might have central apnea and they were afraid she would stop breathing under sedation.  But we have this one which was done as part of a study not under sedation. It took two nights to get..."
Receptionist: "Sorry."
Me:  "Thanks anyways."

Trudging back to the elevator then back to the neurology office I run into someone from radiology who is certain I work for the neurology office and it takes several tries to convince her that I'm not kidding when I say that I don't.

I'm just here a lot.  

Back in neurology...

Me:  "So.... radiology says scanning this is a HIPAA violation."
Receptionist:  "I was just on the phone with them before I sent you down!  They told me they would do it!"
Me:  "I think maybe I didn't talk to the same person you did.  So how about I leave this here with you?"
Receptionist:  "And I'll make sure the doctor sees it and we'll mail it back to you once we get it scanned."

And there you have it.  Getting it wasn't easy and getting it to the doctor was more difficult than I imagined but it kind of fits with the way things have gone (twists and turns and then ultimately working out) and I am relieved to have put that thing in their hands.  And I'm relieved that I did not have all five kids with me while I tried to figure out where it went.

And I'm really thankful to everyone from the doctors to the receptionist at her neurologist's office who made it work so that they hopefully will be able to use this CD since it's what everyone thinks is best for her if there's any way that it can work out.

Now I'll be over here praying that that CD looks entirely normal and that I get that call soon!

Wednesday, January 25, 2017

My Wish for You

Yesterday was a punch in the gut.

I want to write happy.

You have no idea how badly I want to write happy.

But right now I'm afraid.

As the mother of a child with rather intensive special needs I'm actually terrified.


I've been told I shouldn't be.  I was told after the election that there was nothing to worry about. That my fears were baseless.  The conservatives love life and wouldn't hurt the disabled.

People said I was liberal.

As in "look at these stupid liberals who get all their news from MSNBC and wouldn't know the truth if it hit them upside the head."

Which made me laugh.  Sadly.

I had actually voted a straight Republican ticket for years. I was on the board of our Republican Women's group in the county I lived in before we moved out of California.  I've posed for pictures with Republican congressmen.  I've been vocal about being against abortion. And MSNBC?  I don't think I've watched that in over a decade.  We don't actually have cable.

When Tessie was in the hospital I found that CSPAN was the only channel I could stomach, and then only barely.


I watched as the future Secretary of Education said that she thought that choosing to educate children with special needs should be left to the states.  When she was corrected and told that it was a federal law that made sure these kids aren't locked out of schools like they were in the past she said she must have been confused.

Our future attorney general has referred to children with disabilities as the greatest annoyance teachers face.

And yesterday we learned that there is a planned trillion dollars in cuts to Medicaid in the next ten years.  Block grants, that is to say limited amounts of money, will be provided for people with disabilities.

This is expected to be devastating to those with disabilities.

Kids like Maggie.

Kids who have preexisting conditions, will no longer be protected under the law.  Kids who used to go to institutions but who now are in regular classrooms interacting with peers and learning life skills will lose the protections that make that possible.


 
Since having a child with a disability I can tell you that there is one thing that has stood out to me over these last years.  People are often afraid of people with disabilities.  People get uncomfortable around them.  Many don't want to see or hear those who are differently abled.

I think a large part of that is because in the past these kids were locked away and not seen by previous generations.  I absolutely believe that the benefit of having them in the classroom is enormous.  It teaches compassion and wipes away fear of the unknown. And I think it's one of the prolife things that we can do.

Knowing other human beings that are differently abled takes away that anxiety I so often see when people hear Maggie's speech and joyful squeals and realize she's different.

People who know her, or who've even just read about her, begin to see a person not a stereotype.

People who know Maggie, when they hear the word autism, can think of her awesome sense of humor and amazing smile.  It's not just the terrifying diagnosis that some people believe is a fate worse than death (it's not).

A lot of my prolife friends have pointed out that many of the people I was marching with this last week are okay with killing babies in utero that have disabilities.  And obviously I disagree with that.  I've spoken out against abortion many times and for anyone who wonders I'll say it now:  Abortion is wrong.  Always.  I am absolutely against it.

But if you want to stop babies with disabilities from being aborted, stripping them of their healthcare and their chance to go to school, is not the way to do it.

Early intervention services are key to helping kids with disabilities before the gap between their development and their peers development becomes too large to be overcome.  These have been slashed, and my heart has ached to see that it is nearly always done by conservatives.

And now this attack on education and disability benefits?



If those disappear let me tell you, parents of babies with disabilities aren't going to be falling all over themselves to have them.  And those that do?  They won't have a future to offer these children.

It isn't realistic, someone told me a few weeks ago.  Helping all these kids.  Letting them all go to therapy and school.  There are too many of them and it costs too much.

I'm not sure I've ever heard a less prolife argument in my entire life come from the mouth of someone who claims to be for life.  We can't tell women to have babies, all the babies but then tell them that those children are just too much when they get here.

I never believed it when I heard pro-abortion people say that prolifers only care about babies when they're in the womb.  I've known personally too many people who embodied the opposite sort of generosity to believe it.  But I have seen it creep into the reality that I'm facing in the near future, here and there, and I have to say, I am terrified.

I'm sure someone will tell me not to worry. That whatever is coming will be better.  And I sure hope you're right.  Because the safety net has been cut down and striped away and we're about to be shoved over the edge as those therapies and education options are hacked out of existence (after all they can't exist if they aren't being paid for and with preexisting conditions back these kids aren't going to qualify for insurance).



Maybe some people will feel better if these kids are shoved away.  It's easier not to see these differences.  I know I have friends who wish I would stop talking about it.  I feel it keenly when close friends like every cute baby picture but are conspicuously silent every time I post about our worries for the future, or worse, tell me I have nothing to worry about.

Silly me.  Worried that the promises that have been made might come to fruition.

Because it's out of sight is out of mind.  At least if you don't love someone who has faced these challenges.

But I have a prayer.  I know many of you.  You're brave.  And maybe you voted for President Trump.  Maybe you're thrilled with him.  Praise him for the good he does.  I'll be right there beside you.  Pray that he is the president this country needs.  I know I will be on my own knees

But if you see this, these safety nets being cut that hold the hopes of our kids who need extra help please, please, don't stay silent.  You can like him and support him and still ask him, and your representatives to protect the most vulnerable of our population who are outside the womb.

No one else is going to if we don't.  So please I beg of you don't stay silent if you see the small gains of the last decades stripped away.



You don't have to chose between babies or kids with disabilities.  This isn't saving one or the other.  You can do both.  But you need to speak out to protect them all.  Advocating for kids with disabilities and babies in the womb aren't mutually exclusive.  In fact, they should go hand in hand.

I want to write happy.  And I will.

I am resolving to start sharing the glimpses of life that I've loved to share with you in the past, the happy moments that are here each and every day, even when the worries of an uncertain future weigh upon me.  But I will also be writing about the difficulties that families who love people with disabilities are going to be facing in the near future if we really end up plunging off this cliff.

And I hope that you'll be beside me in this, speaking out for the voiceless both inside and outside the womb.


Monday, January 23, 2017

Another Tessie Update

We saw Tessie's primary care doctor today.  She knew everything that had happened.  She hadn't seen us in the hospital because when she had been about to come to see us she'd been told we were being sent home (I'd been told the same thing) but then they'd changed their mind and kept her for another day.  

She looked over all the test results and what each of the specialists said and we ran back over everything that's happened in the last six months, from the developmental delays and the constant sleeping to the present, where Tessie says "hi!" when new people walk into the room and is making really good eye contact.

And she said what the other doctors so far have all said.  


We just don't know.

Except there was one difference with this appointment.

She is one of the few doctors who'd seen Tessie before.  She had witnessed the delays first hand and seen how sleepy she was.  She's watched all of this unfold and she'd seen Tessie when I was calling worried and bringing her in because she was sleeping 20-21 hours a day between three and five months.

She said she's gone over it again and again and it just doesn't make sense... that is to say, what's happening now doesn't make sense.

The baby Tessie is now doesn't match the story of the baby she was before, and it definitely doesn't match the test results.

Finally she said "you know, I think this may just be a God thing."

James was grumpy because Patch tried to kiss Tessie's cheek.  He thinks Tessie is his baby.
 Of course, the tests aren't over.  We're still waiting on the tests that are being redone.

And she's calling the pediatric sleep center a hundred miles away, at a children's hospital, where she's going to talk to a doctor who she knows and tell him the entire story and see if they want to see Tessie there and do another sleep study.

I asked again if central apnea ever goes away and she said the same thing the nurse in the PICU had said.  She said that she's seen it decrease with age but she's never seen it go away and she didn't think that it could, although I should ask the sleep study doctor when/if we see him.


But for the moment things look good.  Tessie looks good and seems healthy and is suddenly catching up on all those missed milestones that seemed so impossible a month ago.


Hopefully soon this will all be a distant memory of that very strange time when we were all kind of panicked, and I'll show Tessie the pictures of her smiling as she bounced around the PICU looking like she most definitely did not belong there.

Again thank you all for your prayers. They were a big part of this rather dizzying week and I'm so grateful for every one of them.

Sunday, January 22, 2017

The March

I'd like to believe that we can believe different things and still believe that we all want what's best for our country. Instead, in the last few days, I've seen friends make each other out to be villains and I realize that by writing this post I've opened myself up to all sorts of criticism, along with readers who will click away and not come back.

I let it sit all night, remembering the "I'm so disappointed in you" message that popped up in my inbox an hour after I wrote that post about deciding to wear pants again and wondering what kind of backlash would follow. 

In the end though I want to be honest with you. I want to use my little corner of the internet to explain why yesterday's March was important.

And if that's a deal breaker for some readers, I understand. But I've always shared quite a bit with you here and I don't think I'm ready to stop now just because it may make a number of people angry.  If I'm going to be a coward here, afraid to write what I really think, than I need to stop writing altogether and be done with it.

Before I start, a number of people online yesterday seemed to believe that the women at the March were actually showing up with knitted hats that were supposed to look like female anatomy because they were named after that word that our President so crudely used. Yes, the hats were crudely named. But they were made to look like cat ears.

And if you have a bigger problem with women wearing cat ear hats than you do with the President gleefully discussing grabbing women by that same body part, you may want to think about that for a while and ask yourself why the one was excusable and the other is causing indignation and hatred.


Today I saw quite a few people talking about the Woman's March that was taking place in Washington D.C. and about the Sister Marches that were taking place around the world.

There had been a stir earlier this week in the prolife world when New Wave Feminists, who was a partner in the march, was told that they were no longer welcome in the march because of their prolife beliefs.  

Now to be honest, upon hearing this news I did pause.  I wasn't entirely certain I was going to the march to begin with.  I knew that if I went it would be me and the five kids, and the very idea was exhausting.  

In the end I thought of the issues that are important to me and I made my decision.  

I am and will always be completely against abortion.  The issue is incredibly important to me.  

So is the issue of violence against women.


In the past year I've seen too many conversations where victims of violence, particularly of sexual violence, were blamed for the crimes perpetrated against them.  But what was she wearing? But where was she walking? Should she have really gone to that party in the first place? were questions I saw bandied about more frequently than I would have ever imagined.

Or maybe they're exactly what I have imagined.  It's not the first time I've heard those same lines.

They're why women don't come forward and don't report these crimes.  Because these questions are as common as the accusations that ripple just barely below the surface of the callously phrased words.  
Quite a few friends today have asked why we even need a woman's march.  It's totally unnecessary because women are totally and completely equal, they say.  

If you believe that I hope you stop and give a little prayer of thanksgiving that your experience in life has allowed you to maintain that belief.  Because in a society where violence against women is as common and as easily dismissed as it often is in ours, we can't be truly equal or truly free.


This is a deeply personal issue to me.  

I know that a few times over the years I've mentioned that one time the boy who I'd been talking with every night on the phone for months (although I guess officially he wasn't my boyfriend) slapped me upside the head then hit me across the back with a two by four, then bragged about it to his buddies at football practice the next day.  That wasn't my last experience with violence, unfortunately, or even the worst, but it was a particular moment that eighteen years later is still seared into my memory.

So perhaps it isn't surprising that I was horrified when I first watched the tape where our now president bragged about how he can grab women and do whatever he wants to with them.  

I winced when I heard people dismiss it as "locker room talk,"  

I felt faintly ill when I heard people say that "all men talk like that."  

No, that isn't true.  And even it were it wouldn't be an excuse.

Perhaps I shouldn't even get started on the topic that I'm the most passionate about these days: disabilities.  

I sat in the PICU this last week watching CSPAN and staring at the oxygen monitor above Tessie's bed.  I watched the woman who will likely be the future Secretary of Education as she bumbled her way through the hearing, fairly reeking of incompetence.    

I heard her say, when asked about disabled children attending public schools, that she thought that was a decision best left up to the states.  When she was corrected and informed that IDEAS is in fact a federal law she said that she must have been confused.  

I have watched our now President flail about mocking a disabled reporter.  I've been told that I can't believe my own eyes, that it's just the liberal media telling me what to think, that he wasn't really mocking him when using the movements that are stereotypically used to mock the differently-abled.  

And if you believe that I've got a bridge I'd like to sell you.


Between the current Secretary of Education pick and the Attorney General pick (he spoke against IDEAS long ago), and Trump's own behavior, as the mother of a child with a disability I have serious concerns about the future my child will face.  

And yes, I've been told I have nothing to worry about, and that my worries aren't valid, and even that "no one would argue that kids with disabilities can't go to public schools" which was bestowed upon me by someone with no experience with disabilities of any sort.  

But as I gear up to use this law to ensure Maggie does get to go to school next year, after having a conversation with a special education director who told me "we have absolutely nothing for her" followed by the remainder of last year's school year not returning my calls, I can confidently say that these laws exist for a reason.  

The horror stories of the past are not so far removed that they've been forgotten.  

All of this was in my mind when I thought about marching.  

And then I thought about my daughters.  Someday Sadie will be old enough to understand the things that our current president has said about women.  They're out there in the world, along with whatever else he says in the future, and it will be recorded for posterity.  

I want her to remember that when these things were being said and accepted by many people in our nation as normal her mother spoke out and said that it was unacceptable.  

So we trekked into town and walked for fifteen minutes after parking as close as we possibly could to listen to the speakers and to stand beside others who feel that they have something to say that needs to be heard.

There were people carrying signs about race, and about the environment, about healthcare, about the glass ceiling, and yes, even about abortion.  

I didn't agree with every person there today.  Sadie and I had a long discussion about that fact. 

I didn't agree with some of the organizers.  But I wasn't going to let someone else dictate to me what it means to march for basic human rights.  


I am prolife.  I am pro woman.  And I feel increasingly that neither party is particularly interested in basic human rights from conception to death, beyond using issues of life and death to command votes.  

I wish that there was a party that represented what I believe in.  But right now there isn't.  And that is another reason why I march.

On our way to the march today the kids and I said a rosary for our president, not that he would be successful in his agenda but that he would be a good man and a good leader for our country.  

I'm going to keep praying for him and for our nation.  

And I'll keep clinging to the belief that the things that we have in common are greater than the things that tear us apart.  

Friday, January 20, 2017

Home and All That I Will Always Wonder

The last few days have been intense.

We're home and I'm mulling over everything that's happened.

I hope being home is the right thing.  I pray Tessie never has another apnea episode.

And I wonder if we've had a small miracle of sorts  that I'll carry with me for the rest of my life.

I didn't know many of the details of how serious the results of Tessie's sleep study were until yesterday.  She stopped breathing 43 times during that night.  Apnea is when you stop breathing for more than twenty seconds.  Her blood oxygen fell to 79 percent for half a minute.

The paper in front of my says she says "Central sleep apnea, severe with moderately severe hypoxemia.  These respiratory events were mostly hyponeas but there were frequent non-periodic central apneas as well.  A minority of these apneas and hypopneas were post-arousal.  The respiratory pattern was ataxic frequently.  No snoring was detected."

I was told yesterday that when her information was sent to the PICU the doctor, he read it and told the nurses that he was planning on doing a tracheotomy when we arrived.  She would need to be on a ventilator.  I was told that he said that the one good thing was that she wasn't dead yet and if she was going to die she probably already would have.

And then we got there.  And she looked like this:


She was rosy cheeked and bright eyed and she said "hi" to two doctors and a nurse as they evaluated her so that "I think she just said hi to me" "Me too!" was heard throughout the room.

Now, let's go back.  At three months Tessie was no making eye contact.  She was missing major milestones across the board.  She slept all day long.  At five months she was still avoiding eye contact, and missing milestones.

In the last few weeks, since shortly before the sleep study, she began to be more alert.  She began to look me in the eyes and giggle.  She started making eye contact with everyone she saw, still smiling all the time.  Everyone who meets her is a friend.  Everyone.

The first suggestion was that the sleep study was wrong.  And that the labs were wrong.  Labs from three different draws, one processed here in Michigan and the other sent to Mayo Clinic.  And the sleep study must have been read incorrectly.

The debates began.  The pulmonologist called just as we were about to be released and said that the sleep study was not incorrect.  It was read by a pediatric specialist and it did show central apnea.  We needed to stay.

All the labs were redrawn, and sent back out, but it will be weeks before they're all done.

The EEG was done, she was hooked up to it all night long, and it came back normal.  No events of apnea.  The next night she was hooked up to an oxygen and heart monitor and again there were no instances of it.


"Does central apnea go away?"  I whispered to her nurse.  "Is it possible she's outgrown it?"  I asked.  She said that it wasn't and that she hadn't wanted to scare me when I came in, but that holding Tessie she'd been terrified because if she had central apnea than sooner or later she would have "an event."

Someday she would stop breathing and not start again.

Do you know CPR? one of the intensive care doctors asked.

A line of specialists came through the room.  She now has her pediatrician and neurologist, a pulmonologist, a geneticist, and a GI doctor.  There were many suggestions of many tests, some of which were done, many which weren't.

She drank a tube of barium like a champ.  Does that count as her third food?  Bananas, garlic bread and barium?  To be honest, she seemed to prefer the barium to the bananas.

But every test done in the last two days came back normal.  She was the picture of health, floating around the PICU cuddling nurses and giggling with everyone she saw.  And those developmental delays that everyone from her therapists to doctors have been monitoring?  Not one was apparent the entire time.

Last night, with a long print out of doctor's to call to follow up, we came home.  I nervously put Tessie to bed, where she slept through the night and woke up cheerfully this morning.  After I stared at her back for a good long time, breathing easily only when I saw her little back rise and fall.

I have so many questions.  Did she ever have central apnea?


Well, the PICU doctor who was there yesterday asked me if I'd ever seen her stop breathing.  I told him I had, six times.  The first time, at three months, when I saw that she was completely and utterly still.  I put my hand on her chest, Nothing.  I put my hand under her nose.  Nothing.  I raised my hand to her forehead, terrified.  "Please God, don't let her be cold.  Please God."  She wasn't cold and the moment I touched her she gasped and started to breath again.

"That is apnea." he said.

So she has it.  Or had it?  I don't know.

The day that our neurologist received the test results he called me.  I was sitting in behavioral testing with Tessie. I'd barely gotten any sleep the night before as they attempted to do the MRI and then a wired Tessie bounced off the walls of our hotel room when we'd tried to go to sleep.  And then in the morning I'd learned that Tessie's godmother had died.

That day as I ate breakfast and drove to the hospital, I kept thinking about one of the last exchanges we'd had on Facebook.  She had been too ill to come to the baptism as she'd hoped, and so a proxy had stood in for her and her husband.

So she had never met Tessie.  But she commented on one photo, "How can you miss someone so much that you've never met?"  I commented back that I couldn't wait for the day that she held Tessie.


That day never came.  And as I held Tessie that day, and watched her go into the MRI that night, those words were all I could think of.  Every time I think of them, I cry.  I wish she'd been able to hold and cuddle Tessie this side of heaven.

That night at the hospital, after receiving the news of the sleep study, but without any idea how serious it was, I sat next to Tessie and prayed.  I prayed to God to heal my sweet baby. I prayed for the repose of her sweet godmother's soul. And I prayed that if Elizabeth was before God, that she intercede for her goddaughter.

I sat there, prayers humming through my head as the magnets knocked loudly together, not yet even as terrified as I should have been, but afraid all the same.

As the debate ranged on around me yesterday, with tense conversations outside the glass of her room, while I heard bits and pieces about how there were mistakes or weren't, how there must have been mistakes because those tests couldn't have been right, my mind kept going back to that night beside the MRI machine, and that morning getting the call from her doctor and all those prayers I'd said.


Maybe the half of the people arguing for mistakes were right and it was all a huge error.  Except whenever I'm almost convinced I think of  the developmental delays that were so apparent, and how they were observed by so many medical professionals and therapists.

And she was sleeping twenty hours a day shortly before she hit six months old.  And I saw her stop breathing on multiple occasions.

I don't know.  And in this life I imagine I won't ever know.

But I think I'll always remember that night beside the MRI machine, praying that her godmother pray for her and imagining that she was finally holding Tessie in her arms as she lay inside the MRI tube so tiny and alone.


And when I think of it I want to say thank you a hundred times over.

Thank you, thank you, thank you.

And to those who have prayed here on earth, thank you too.

Whatever the reason our girl seems strong and healthy.

And as the test results began to trickle back in I'm going to be praying that the normalcy continues and that this whole thing will someday be an odd, nearly miraculous memory, all bright with the possibility of what may have happened and all that we can't know.

Wednesday, January 18, 2017

Tessie Updates and Smiles

This is where we were when I left off writing last night:


During the night Tessie did not stop breathing and her oxygen didn't fall, all night long.

She definitely wasn't a super sleeper like she usually is, with the beeping alarms and the light that had to be on so that the video camera could record alongside the EEG, and with roughly thirty wires attached to her, but we finally got some sleep and then it was morning.

And she was up and running.  Or at least rolling.  And wrapping herself in rolls of wires:


She was not a fan of the nasal cannula that she had in that measured her CO2 levels, because it made thumb sucking rather tricky, but she managed.


And she smiled and giggled at every person who visited her. And said "hi" to person after person who came into the room surprising everyone.

We met a geneticist, who has a few ideas, and all the tests that were abnormal are being redone to make sure there wasn't any sort of lab mistake.  Because look at her:


She had a EKG, and two more blood tests and then they let her get unhooked from everything except her oxygen monitor.

She loved it when they washed her head off with a warm washcloth and would cry every time they stopped washing her hair.


The first news we got this morning was that it didn't look like we were going home today, and then the attending doctor told me he thought we'd be able to go home later, because it will be weeks before all the tests are back and he thinks we can do most of it outpatient since she did so well last night, but we haven't heard anything in about five hours so I'm not sure if we'll still get to.

Patch does have his first ballet class tonight, so I'm hoping to hurry home to take him to that and then hurry back if we don't get to take her home.  Because he's been desperate to go to ballet for two years, and it's finally time.

I'll post more when we know more, and when Tessie lets me since she as not letting me put her down last night, but hopefully the news continues to be good.  She certainly looks like the picture of health while she's awake and if she really isn't having oxygen problems when she falls asleep now, that would be amazing.

Tuesday, January 17, 2017

At the PICU

This morning I woke up and couldn't shake the feeling that I needed to call Tessie's pediatrician.

Her neurologist had told me I could give her until Thursday, but if she hadn't called by then not to wait any longer, but I found myself watching the clock and when it hit eight I called and spoke to the receptionist and then left a message on the nurse's line.

Half an hour later the pulmonary office called and told me they would like to see Tessie today.  By then the appointment was only an hour away, and a short while later Paul dropped us off and picked Patch up from school.

The pulmonologist went over Tessie's history, and our family history and then brought out the sleep study.  I had not had a chance to see it up until that point.  I really hadn't seen it, he asked.  He was shocked.  The report was written on the thirtieth of December.

It said that Tessie has severe central apnea and that she had had severe oxygen problems over the course of the test, with her oxygen levels dropping as low as 79%.

"You know," I said, "I was pretty scared when I left the neurologist's office yesterday and he said that if she hadn't looked so good when he saw her he had planned on admitting her."

"That's what I want to do right now."  He replied.


He called her primary care doctor and then the hospital and the next thing I knew we were being sent to the hospital where she would be admitted to the PICU.  It wasn't, he explained, because she's so sick she needs the PICU (she's not, at least not during the day), but because they have the equipment and ability to monitor her the way that she needs to be monitored while she's being tested.

So Tessie and I went to the hospital and up to the PICU and we went over what's been going on with her again.  The doctor at the PICU said that by looking at her information he had, he thought they would have to ventilate her when we arrived and that the baby sitting before him just doesn't match the baby who has the test results and history that we're seeing.

Tessie, for her part, has smiled at everyone who's come into the room and thinks that this whole thing is a huge party.  Everyone she sees is her best friend and it took some convincing to get her to fall asleep.



But she is finally asleep and the alarm parameters have all been turned down so low that they aren't dinging every thirty seconds, which is helping her stay asleep.

Prayers are hugely appreciated.  I'm thankful we may be getting closer to some answers, and I'm extremely thankful for the care she's receiving (and that nothing has gone horribly wrong before this, with her oxygen levels getting so low) but this day has been stressful at best.


Monday, January 16, 2017

Tessie

Today was her neurology appointment.

I didn't learn anything new.  She has central sleep apnea and we should be hearing from her pediatrician in the next couple of days and will learn what is going to happen next to deal with keeping her oxygen levels up at night.  

The results from the last test indicated that further testing needs to be done to check for mitochondrial disease, and of course that hasn't changed.  

Her oxygen levels at night are falling too low, since for whatever reason her brain stops telling her to breath, and he believes that the pulmonologist that her pediatrician will likely refer her to will put her on oxygen at night.

I will feel a hundred times better when that actually happens.  


We're still waiting for the MRI to arrive to see if there are any answers there.  He's particularly interested in her brain stem since that's responsible for controlling breathing.

When we were walking out he said that if she hadn't been doing so much better today (which mainly meant being awake and staying awake longer, although she was showing off her gross motor skills too) he was going to have her admitted to the hospital.

But because she was much more alert and played the whole time instead of passing out halfway through the exam she got to come home. And for that I am very thankful.  But I'm also unnerved when I think of how much she was sleeping before and how that was likely because she wasn't getting enough oxygen.


And so now we wait on the results from a new list of tests to see if they offer any new answers.


Thankfully she has been more wakeful and is my super cheerful, strong baby who's working on crawling.


Thank you for the prayers.  If you have a moment to say a prayer that the next round of blood tests goes smoothly tomorrow we'd appreciate it.  I was supposed to take her tonight, but the sidewalks were so icy when we came home from ballet that Sadie and I could barely stay on our feet, so tomorrow it is. But taking Tessie to blood draws is one of my least favorite things.

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.