Tuesday, November 28, 2017

Day 18 and a Spinal Tap

Disclaimer: If medical tests like spinal taps make you queasy, maybe skip this one.

Yesterday I found myself thinking, as I signed a paper that said I understood the procedure that the ER doctor was about to perform (followed by a brief description in my own words that said he was going to "insert a needle into my spine to withdraw fluid to be tested" to make sure I really knew what I was agreeing to), that any time I'm having a tough day and find myself thinking "can this day any worse" I will forevermore ask myself "have you had a spinal tap today?" and if the answer is no than yes, it can get much, much worse.  

On November 4th I woke up with a slight fever.  99 degrees.  Not even a real fever, really, I told myself.  I had a 5k to run.  It was my second after four months of training and I was so, so excited.  Sadie was in a kid's race and was extremely excited for us to be running on the same day. Besides I'd had a cavity filled the day before, so maybe it was from that, at least, that was the excuse I made when I laced up my shoes. 

So I ran, which, in hindsight, was a horrible decision.  By the end of the race (my disappointing 11 minute mile was a miracle) I knew that the temperature wasn't a fluke and that some bug was coming on fast.  

Sadie's 1k
By night time I had a fever of 105.2, despite Tylenol and Motrin.  I finally managed to sleep and in the morning I felt a little bit better.  The fever was down to 102.  

By Monday morning I felt mostly better and we had a busy week of new schools and bus schedules and while I knew I didn't feel well enough to run, it didn't really matter, because life was too busy with all the changes that had come along.  I pushed through the fatigue, and headaches, and nausea, and went to sleep as soon as the kids were tucked into their beds.  

The next week was the next time that I took my temperature and it was then that I saw that it was still over 100.  And over a hundred it stayed.  After a week of daily fevers I went to see my doctor, and told him I was afraid I had a kidney stone, because my kidneys had begun to hurt (and having had infections in the past, and one stone, I knew that feeling).  

Every test came back normal, including an ultrasound of my kidneys.  He said to come back in a few days if the fever didn't resolve, and so, three days later I was back.  He ordered ultrasounds of my gallbladder, liver, spleen, and a few other organs, and while my spleen was slightly enlarged, everything looked good.  

Feeling sick, but there's always someone to cuddle with.
After thirteen days of fever he ordered a Mono test, an EBV test, and a CMV test.  They were all positive, but the results showed that they were all past infections, with no current antibodies.  

Somehow I cooked Thanksgiving dinner (I was extremely proud of managing that while feeling the way I felt) and yesterday, on the seventeen day of the fever I called at 8am when the office opened.  

I mentioned that the fever was still hovering between 100 and 101 most of the time, and that for the past three days I'd had a dull headache and neck ache. Nothing horrible.  Just annoying.  

And they sent me straight to the ER.  

I was embarrassed to be there, with my low fever and dull headache and neck pain.  The triage nurse put me in a room with a chair and said they might move me somewhere else if someone else thought I needed it. 

After an hour a PA came in and was immediately more concerned.  17 days of fever.  Well 23 if you counted the week I didn't take my temperature and went back to that fever of 105.2 (and apparently everyone there thought that counted). And neck and head pain.  But not severe, I pointed out to anyone who would listen (I'd googled and google said spinal meningitis was the worst headache ever... this was not that).  She told me to wait while she talked to the doctor.  

A nurse arrived a few minutes later and took me to a room with a bed.  And a moment after I tied the hospital gown behind my neck the doctor was in the room explaining the difference between viral and bacterial meningitis (he did not think bacterial was likely, because I probably would not have survived that long with bacterial meningitis, but viral might be possible, yes, even with the dull pain) and he was explaining why I needed a spinal tap, and excuse me nurse can you bring her some fentanyl and ativan (things I learned yesterday: I can still be totally panicked about that needle being near my spine after being given ativan).  

Before yesterday I had had 10 injections in my spine... four cortisone injections for a herniated/ruptured disk, two spinals, and four epidurals (one went bad and had to be replaced with a spinal, which is why they don't add up).  When I go in for c-sections, the epidural is the thing I stress out about for months and months beforehand, not the major abdominal surgery.  

And the lumbar puncture was... about as I expected.  It's not something I hope to ever experience again.  And today I've found that I can spend a solid ten minutes on my feet before I have to lay down.  It still hurts.  A lot.

And so far still no answers.  I'm home.  Something liver related was elevated.  Even my white blood count was solidly normal (and lower than the last blood test... I glared at those results like "you aren't even trying!  Fight back!").

So we're now on day 18 (or 24) of fever.  But who's counting?  Okay, me.  Totally me.  I'm probably counting hours at this point... I am tired of being sick.  I go back to the doctor tomorrow.  

And that is what is going on here.  Lots of laying in bed with kids on all sides watching cartoons (and when they aren't here catching up on any and every Netflix show I've ever been vaguely interested in).  I'm really caught up on my royal family news.

Also knitting.  Lots of knitting.  Scarves for everyone.

And I've never been more thankful for buses.  Today everyone came and went to school and all I had to do was walk out on the porch and wave.  I'm not sure how I would have survived without those glorious yellow buses.  

Hopefully I'll have some good news soon.  Like that the fever is gone.  And that I'm up and about and not running to lay down every half hour.  And that the scary things that come up if you google "persistent fever" have not come to pass (I know, I know.  Do not google.  I'm the worst at that.).  

Sunday, November 19, 2017

Tessie News

I promise that one of these days I'm going to write about something else.  I was meaning to write all week, had blog post ideas flitting through my head, but I'm on day eight of a hundred plus fever and I've been falling asleep as soon as the kids are in bed each night.

I've even given up on NaNoWriMo this year, as mini disaster after disaster have kept me from writing until I've decided it's just not in the cards for 2016.

We had another scary night with Tessie.  It started with an alarm going off and a floppy baby and momentary terror that had my heart in my throat and was followed by a dozen more apnea alarms before morning, but this time I realized in early morning that the light that signaled a too slow heartbeat was also bright red and glowing.  And that is how I found myself on the phone again with the pulmonology office, the after hours line this time, in the early early morning.

It can be a delicate balance.  She has central apnea.  That means her brain stops telling her to breath.  That's why she has a monitor.  If I called every time she had a dozen apneas in a night I'd have called a lot.  Every night when she was tinier.  And the "is this important enough to call" can feel complicated.  Sometimes, as we've been on this journey with her, tiny things are actually huge and things that feel huge aren't important at all.

The person who was on call was in her car when she called back and explained that as a result she couldn't see Tessie's file, but after a moments conversation she announced that she knew exactly who Tessie was, because there had been some conversation in the office about the results of the second sleep study.  

Now for those who is new here, two sleep studies ago Tessie only had 15 central apneas, which was no enough for her insurance to continue to pay for her monitor.  I fought this, because she's had instances, like the one the other night, where she's stopped breathing after having next to no apneas for a month beforehand, and had to be turned onto her back and had her chest rubbed hard until she gasped and started breathing again.

I spoke with a nurse twice and was told they would not be budging on this, it was policy that when there were less than five episodes an hour the monitor went back to the medical supply company, and than Paul spoke with one of the pulmonologists and was told the same thing.  We finally took her in to see her pediatrician and he called and fought for her to keep the monitor and they ordered another sleep study, saying that if this one is normal we'll know with 99.99999% certainty that she is fine.

I will admit that I felt like I was being humored.  And what were the chances that she would have a bad night?  They were terrifying, but also few and far between.  

But she did.  She had multiple instances of hypoxia, which earned her the right to keep her monitor for another six months, and resulted in the delivery of a giant oxygen machine that gurgles happily in the center of the room all night long.

The On Call knew who Tessie was because there had been a conversation in the office about her case when the results of the seconds sleep study came back, about "mother's intuition" and how unlikely it was that I had persisted in pushing for more tests.  She said the talk in the office had been that "if that baby had been with another family, it could have been..." her voice trailed off and she left the rest unsaid.  

It could have been very, very bad, my mind completed the sentence.  

Two nights ago, Paul had gotten to her before I did, he was maybe three steps ahead of me, and he shook her shoulder and she had flopped back and forth still, soundly asleep and for a split second, before I realized that the heart monitor was still showing a steady green light, I was terrified.

I thought that we'd lost her.  Then I saw her chest moving steadily up and down again and I couldn't stop shaking.  

If she hadn't had her monitor then, would she have been all right?  

Still the sleep study and hypoxias have bought us six months with her apnea monitor and maybe in six months she really will have outgrown it.

If she's going to outgrow it.  

No one can tell me if she'll outgrow it because we still have no idea why it's happening.

Or maybe I'm going to be holding my breath every six months, forever.

There is a tiny sliver of good news in all this though.  

Tessie has had weekly therapy sessions since her developmental delay became so glaringly obvious when she was between one and three months of age (at three months she was missing virtually all of her one month milestones).  

Her last evaluation was about a month ago.  Her results came back showing some big strengths.  She scored a 12.5 out of a cutoff of 7 for intelligence.  Her gross and fine motor skills were similarly strong. But she was way below the line in social communication and initiative, giving her a 40% delay in those areas.  Which is... not insignificant.  

However after five days on oxygen she was vocalizing way more than she usually does and was making a little bit of eye contact and definitely using her voice (in whines mostly) to let us know when she wanted something.  Usually she doesn't do that and doesn't let anyone know when she needs something, so that was extremely encouraging.  

Her pediatrician is planning on sending her for an autism evaluation in a month and a half when she if officially eighteen months old.

On Wednesday we were at the older kids' gymnastics classes and she fell asleep on me for the third time in her life (if I'm counting correctly).  She loves to snuggle but it's almost impossible for her to be still against me.  Usually when she's tired she wants to be in her bed by herself and she quietly falls asleep.  Which is how she has been since the day that she was born.

So I loved every moment of her sleeping quietly against my chest.

And in other news, she was able to have a equine therapy session alongside Maggie yesterday, which was hilarious to watch.  At one point she was riding along and I could see her bouncing up and down on the saddle happily as she went past.

So we wait and pray and cuddle our hilarious and strong little bunny.

We are so lucky to have her.  

Friday, November 10, 2017

Roller Coaster Weeks

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

The last month has been a roller coaster of sorts.

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

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

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

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

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

I told her I was terrified to lose that monitor.  

She said she'd call me back.

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

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

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

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

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

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

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

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

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

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

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

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

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

I nearly fell over.  

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

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

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

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

I thanked him and hung up the phone.  

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

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

They bumped us up to Thursday.

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

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

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

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

Instead the nurse delivered news I honestly had not expected.  

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

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

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

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

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

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

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