It Was All a Bad Dream

I know I became very dodgy during Aria's most recent hospitalization. 

She was hospitalized for something that should be simple - a bowel obstruction.  But nothing is simple with Aria...especially when you are dealing with her intestines.

So much went wrong.  We ended up having to deal with so many other issues.  You have no idea.  I'd have to write a novel to get through it all.  But Aria, in true rockstar fashion, pulled through.   

No one should have to see their child that color.  That lifeless.  No one should have to run out into the hallway at 12:35am yelling for help even though all the alarms have been going off for what seems like forever.  I don't know that I will ever get those images out of my head.
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I thought instead of boring you all with my manifesto I'd just create one of my fun little videos.  Try to enjoy:  

The Problem with Having Four Fingers

So, let's just say that there were a company out there who pays for children to have life changing surgeries. 

And the VAST majority of the time these life changing orthopedic surgeries are performed and paid for.  No questions asked.

But then right before your child is to have one of these life changing surgeries a company decides that your child is too stupid.  Too delayed.  Too special to benefit from functional limbs.  You know...she'll never be able to do anything anyway.

Let's just say that happened to your kid.

But you knew your kid could be even more amazing if she only had the proper limbs tools.

You'd probably cry a lot be pissed.

Let's just say that happened to your kid.



Yeah.  If Aria had a middle finger to give she'd be holding it up SO high right now. 

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I'm glad there is an appeals process.  Those who work with and know her agree it is necessary and all I've asked to date have stepped up to the plate and gone to bat for her.

She will get this done.

We Are Home

Well, hey there! I just wanted to update and let you all know that we've been home from the hospital for a couple of weeks now.

The amazing thing is that Aria is doing the best she has ever done. The emotional roller coaster of parenting a child like Aria is mind blowing. Just a month ago I was certain she would die and today I am the most hopeful I've ever been.

I'm currently sitting at a hotel bar in the center of an old man sausage fest. The female bartender is trying embarassingly hard to get some play. It is making EVERYONE uncomfortable.

Also, strangers are trying to talk to me. I don't like it so I thought I'd burry my head in my iPad in an attempt to avoid any further social interaction.

I'm currently at a deafblind family leadership conference (where everyone thinks this life we lead is AMAZING - kuddos to them...no wonder I'm drinking). This is my first time away from Daisy, Aria, and Kevin all at the same time but I know that Kevin is going to rock the Mr. Mom role.

I love you, Kevin, Daisy, and Aria.

I miss you!

Re: The Shaking

Remember the shaking?

Well last night one of our wonderful nurses (we do have many wonderful nurses) and I were standing bedside playing with Aria and all of a sudden she started doing her new shaking thing.

As soon as she started shaking he stopped talking and just looked at her.  I said, "this is the shaking she's been doing".  This was his second night in a row as our nurse and he looked at me confused.  I told him about mentioning the shaking to the nurse who thought Aria had just had surgery, and then mentioning it to the residents the next morning.  Apparently there was never a note made. 

Over the next few minutes we watched Aria have her shivering spells multiple times.  The nurse seemed to care about my concerns.  I was thankful.

When I woke up the next morning I was told by our day nurse that he had talked to her and written a long note suggesting that the issue be addressed.  He's a good nurse.

I had plans for dealing with this issue on an outpatient basis since my concerns hadn't been taken seriously over the past few days.  This isn't the first time Aria has had seizures that aren't being completely controlled so it's not like I was totally freaking out about it.  I figured she'd be more likely to get the help she deserves if I were to wait for us to get out of hell inpatient and into her neurologist's office to explain what has been going on.

BUT thanks to our fabulous night nurse, a neurologist showed up bedside for a consult this morning.  He was concerned that what we were seeing was breakthrough seizures so he decided to bring the attending in to the conversation.  She said that it was likely that her seizures have just changed (which is why I haven't seen a typical Aria seizure in a couple of weeks but have seen this new shaking quite frequently over the past few days).  She decided to get a phenobarb level and an EEG to see what was going on. 

They did the EEG this afternoon.  We haven't gotten the results yet but, since she didn't have an episode during the 30 minute test, I'm assuming the test will just show a shit ton of multifocal spikes...pretty standard seizure kid stuff.

Baby Medusa

In the past when Aria has started having breakthrough seizures her neurologist will order a blood test to check her phenobarbital levels, the levels will generally come back a little low, and then her phenobarbital dose will be increased just enough to get the seizures back under control.  I've never really asked many questions about the process.

Today I actually asked the neurologist what numbers they're shooting for when they look at phenobarbital levels.  The doctor told me that they'd like the levels in her blood to be between 40 and 60 but closer to 60 (they don't want them to hang out around 40...that's for sure).  She explained that sometimes they'll need to go above 60 to properly control seizures but it just kind of depends on the kid (she said she has one patient she keeps around 200 in order to keep the seizures under control!)

So, they try to keep Aria's phenobarbital levels close to 60 in order to keep her seizures under control.

Guess what her phenobarb level came back as today?

Eleven. 

Yup.  11.

So, just increasing her maintenance meds won't be enough at this point.  Aria, who normally gets 12 mg of phenobarbital two times per day just had 60 mg of phenobarbital put into her PICC line to try and get her phenobarb levels up to a point where her seizures will be under control.

She is SO passed out right now.

We'll deal with figuring out the appropriate maintenance dose tomorrow.

So, my assumption is that the shaking caused by imaginary surgical pain was actually breakthrough seizures.  I'm so glad Aria had a kick ass nurse last night.  He kept me from waiting until Aria was outpatient to deal with this issue.

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On another totally unrelated note:  Aria was in a super good mood a couple of days ago.  Pretty cute, huh?

Indicative of this Hospitalization: Part II

Nurse: (speaking to other nurse while giving report) "...and last night Aria went non-disclosure" (turning to me) "do you guys still want to be non-disclosure?"

Me: (Stares blankely at nurse for a moment) "I'm not sure what you are referring to"

Nurse: "When I came on this morning I was told that you went non-disclosure last night because you didn't want anyone to know you were in the hospital"

Me: (Stares blankely at nurse)

Nurse: "There is another family in the hospital that you have had some trouble with so you don't want anyone to know you are here for Aria's safety."

Me: "I can't even begin to imagine where that story came from."

Nurse: "So, do you not want to be non-disclosure anymore?"

Me: "Correct.  I have NO IDEA what you are talking about."

Nurse: (turning to the nurse to whom she is giving report) "So Aria is no longer non-disclosure".

Me: (Stares blankly for just a little while longer) "I have serious concerns about communication in this hospital".
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To be fair:  I do have some concerns for Aria's safety but they have nothing to do with the other families here.

Indicative of this Hospitalization

Me: "Aria has been doing this really weird shaking thing with her rapid breathing today. If it didn't look so much different from her regular seizures I would think they were seizures"
 
Nurse: "It's probably just a reaction to the surgery she had today."
 
Me: "She had surgery two and a half weeks ago."
 
Nurse: "Didn't she have her g-tube placed today?"
 
Me: "She had her g-tube placed over a year ago."
 
Nurse: "Well it's probably just a reaction to pain from the surgery."

Me: (smacks head with hand and makes a mental note to ask someone else tomorrow)

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I shudder to think what goes down at children's hospitals that aren't consistently ranked in the top five in the country.

Cryptic Update

I know I haven't updated in probably over 20 days.  It's interesting.  This blog was so therapeutic.  I think it still will be.  I just don't even know where to begin.  We have been through so much in this hospitalization and we aren't even close to coming home.

It has been frustrating.

I've been a total bitch.

I've HAD to be a total bitch.

I've had to use that DNR.  In fact, I had to use it early this morning when a crash cart was called for Aria...an experience so different from previous cart calls...I thought this one was the end.  Just typing it brings back the memories and makes my stomach churn.

They didn't go further than bagging her but Aria was able to fight back with just a little bit of oxygen. Proof that she's still supposed to be here.   

I promise to update more later.  I just need to figure out where to begin.