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Tuesday, December 13, 2011

The Shock Sets In

You can read PART ONE here. Oh, and just so y'all know - so you don't grow concerned - Squirt has been home since Thursday, and has been seizure-free so far.  We saw a pediatric neurologist on Monday morning, and I'll write about that visit as soon as I have time. 

I clamored down from the ambulance oh-so-gracefully, as only Tonggu Momma can do.  Of course I forgot the diaper bag, so the driver ran after me, carrying it, as I trotted to keep up through the maze of hallways.  We arrived in the pediatric ER at 10:05 AM and immediately the questions began as they placed leads all over Squirt's body and inserted a peripheral IV line.

What is her name?
How old is she?
Is she allergic to any medications that you know of?
What is her medical history?
Does she have any developmental delays?
Has she ever had a seizure before?

It was that last question that made me pause.  Because I now think perhaps Squirt seized once this summer.  It was so brief - maybe 10 seconds at the most - that I wrote it off at the time, making fun of myself for being a Total Drama Momma, especially since her body didn't go into full convulsions.  But now... now I'm thinking perhaps it was a seizure, only I didn't know enough to know it.

I told the doctors that.

And they kept going.

A woman handed me a chart, asking me to fill out Squirt's name and birth date, telling me that we could worry about the rest of the form later.  Unfortunately I couldn't even manage to do that because I wrote in my own name instead of Squirt's.  Of course I felt like a Complete Idiot when she double-checked with me, but she told me it happens more often than not when a child arrives by ambulance.

We talked about Squirt's medical history, or should I say the lack thereof, and of course it complicates things.  I know we have few options when it comes to this topic and China, but I just have to throw out there a plug for open records in the United States.  Adult adoptees deserve to know their medical histories... and one of the ways they can obtain them is if they have access to their own adoption files.  No one should have to freeze, as I did in the ER, when asked, "was there any trauma at birth or during the pregnancy?  has she ever had a serious illness or head injury before?"

Because I didn't know the answer.

I didn't know.

Anyways, they monitored Squirt closely, with the priority being to raise her blood sugar since her glucose levels were low at 48, although not typically low enough to cause seizures (the numbers are usually in the twenties for that).  Squirt drank about 7 ounces of a Pedialyte/ apple juice mix, and her glucose levels rose to 75 within the hour.  Things started to calm down, so I asked the husband to grab me a ginger-ale because I felt completely nauseous.  I was holding Squirt on my chest as we both lay on the hospital bed.  The husband left and I began to feel more calm about the entire surreal experience.  Only one nurse remained in the room.  I mean, that's a good sign, right?

It was about 11:15 AM.

At 11:20, Squirt began seizing again.

Nurses and doctors swarmed into the room.  They placed an oxygen mask on Squirt as she lay in my arms, convulsing.  Her first seizure was deemed tonic-clonic (previously known as a grand mal), but the second one may have been identified as tonic only, but I'm not sure since the acronyms confuse me to no end.  Regardless, whatever kind of seizure it was, it lasted 46 seconds.

My heart started beating again when she took her first visible gasp of air.

The husband walked back in the room about five minutes after the seizure.  Which means, of course, that he's now terrified to leave Squirt's side.  My mom and sister showed up at 11:45.  And we know this only because of the wonders of text messaging.

After Squirt's second seizure, the doctors got serious.  They administered Ativan and hung an IV bag.  They ordered a CAT scan and an EEG, and told the husband and me to prepare ourselves that Squirt may require a spinal tap.

I hadn't prayed up to that point, not because I didn't want to, but because I truly couldn't think.  But when they said "spinal tap," my brain kicked into gear and the prayers started flowing.  I told the husband to call Dory in case we needed her to pick up the Tongginator from the bus stop.  And I wanted him to call our pastor so that the prayer chain could begin.

God, what do I even ask for?

to be continued...


Cristina said...

God already knows what you need - just lean on Him and trust in his goodness and mercy. Praying for you all here in Tassie xxxxxxx

Claudia said...

Oh, Tonggu Momma, I don't know what to say!This must have been such a terrifying experience - I'm on tenterhooks for the next part. VERY glad to have read your intro.

3cmum said...

Oh what a dreadful experience. Its good to know she is home but I'm on tenterhooks too...Can you update us on how she is???

Vicky said...

Okay, now I'm totally crying! I pray everything is okay with your little Squirt! I know she's home but at this point in the story....still so many unknowns.

Bless you!

Sharie said...

Poor kiddo - I hope you have answers sooner than later. Prayers continue here.

Reena said...

OMG, I cannot imagine the terror and helplessness. Many prayers for Squirt.

jen@odbt said...

Praying for you all.

Aus said...

Glad that you are home - relieved actually - and prayers will continue from here!

Prayers ss much for you as T-daddy and the T - as for Squirt! So hard for a parent or sibling to have to deal with this!

hugs - aus and co.

Girly Girl Mommy said...

So thankful to know y'all are home and squirt has been seizure free. How utterly terrifying. Praying for you all and squirt!!


lmgnyc said...

I'd ask for answers and strength. Answers to what is going on and strength to get me through.

Holding your hand virtually. Sending you all the strength I have to help you through.

Foxxy One said...

I'm sitting here crying because you are living my nightmare from 6 years ago almost to the date! When Dylan was placed in my arms, he did a brief shudder thing. Looking back, I realized it was a seizure. We came home on Sunday (this past Sunday was exactly 6 years) and then on Thursday he had a day full of tonic clonic seizures.

For years we thought our son's developmental delays were due to the seizures, the fact that he stopped breathing during one of them and had to be resuscitated and then the use of phenobarbytal.

We just discovered that the seizures and our son's delays are due to a genetic deletion.

It's scary as hell. Your in my prayers and if you need to chat with a Mom who's been there, done that, please feel free to reach out to me.

Kayce said...

Oh TM. I am just a jumble of tears, worry and full of prayer for you guys. I know how scared you were during all of this and I'm sure you are still filled with worry. Keeping all of you in my prayers and most of all Squirt. Hugs!

Briana's Mom said...

There are just no words. I can't even imagine how scared you were.

Chris said...

oh my,oh my, oh my!

I am just praying!

Janet said...

Still praying for your little Squirt, and for her family, as you sit there and feel so utterly helpless. God is in control of this situation. Praying for strength for you all. *hug*

Kelli said...

Still praying your sweet Squirt and for you!

Julie said...

I know how you feel. My daughter Malia has seizures also, it is one of the scariest things to watch. She is now on Keppra (started out on Dilantin, but had bad side effects) if I forget a dose she will have a small one. I hate seeing her go through it. God bless, and I will be praying for you to find meds that will keep her out of them.

The Byrd's Nest said...

I'm so sorry all of you are going through this. It is so frustrating to answer all of those questions with "I don't know". It infuriates me that I don't know this about my daughter's and they don't know as well. Know that I love you and I'm praying for you and Squirt.

Jenn said...

I've been where you are, with my youngest daughter, seeking answers to mysterious medical symptoms, including seizures...it can be a very lonely, frightening place to be. PLEASE do not ever be afraid to question the pediatric neurologists, or to seek 2nd or even 3rd opinions if what you're hearing from the docs just doesn't seem to fit with what you know about your daughter. I ultimately had to go that route, and am so thankful I had people encouraging me to listen to my instincts vs. the doctors' b/c it's likely that seeking these other opinions ultimately saved my daughter's life. (I have a theory about neurologists, but don't share it publicly...pm me if you'd like to hear it.) Best wishes to you & your daughter!

Donna said...

My son had seizures too. First at 18 month and several more at age 3. His were febrile seizures - brought on by a sudden spike in fever. It was absolutely horrible to watch and even though it's been 20 years (almost to the day) since his last one, I will never forget how it felt to watch my baby convulse and think unthinkable thoughts about what might happen to him.

The Doctors assured me that he was breathing during the seizures and they weren't doing any lasting harm to his brain or any other part of his body. His seizures lasted about 1 to 2 minutes and that seems to be the norm. I don't know if your little one has febrile seizures or something more serious but if it is febrile seizures you can take some comfort in knowing that almost all kids outgrow them by age 5. Because of this, we didn't go the phenobarbital route. I just monitored him very closely when he was sick to make sure his fever was always under control.

I hope you get some good answers and life returns to normal soon!


Wendy said...

My daughter had atonic seizures (she'd just kind of flop over) and abdominal migraines from the time she was about 15 months old. None of the tests showed any abnormalities (MRI, EEG, etc.). She hasn't had a seizure since she was about 2 1/2 (she's 7 1/2 now). But she does have a migraine every once in a while. So, I know this is the most helpless feeling in the world. We were fortunate to have a wonderful pediatric neurologist.

I'd also echo was Donna said. At least for us, Lily, who never had a febrile seizure, outgrew the atonic seizures and never required medication.

I hope you get the answers you need as soon as possible, because waiting and wondering is just agonizing, as you know.

Will be all of you and especially Squirt in our thoughts and prayers.

The Source said...

TM, all our prayers for your precious little Squirt! God has His hands on your baby girl. Will check back for updates and pray for good news. Love and hugs!

Anonymous said...

I'm so glad she is home now and has been OK the past several days. Zoe fell in our driveway this summer and went unconscious. My husband was four feet away, but had his back to her. We don't think she tripped or anything. She just went down.

I remember that paralyzed feeling in the ER trying to answer medical history questions. The doctor asked onw question and I told her we didn't have any history. She asked another question and again I told her we didn't have any history. When she asked a third question, I think I almost screamed, "We have nothing. We don't know ANYTHING!"

It hasn't happened since, but she has been complaining of headaches. She had a CT scan about two weeks ago, and it was normal. Thank goodness.


Cedar said...

I never have anything useful to say, but I want you to know I too am praying, waiting to hear more, and always glad to see a new post.

Tammie T. said...

Tears are streaming down my face as I read this post. I am so sorry little Squirt has had to go through so much and I am also sorry for you and your husband. I am praying for your family and I pray for the doctors to have the knowledge to help Squirt now and in the future.

organicnerd said...

Praying for you guys...love you!