Friday, April 22, 2011

Busy Morning

We had a very long morning after a long night.  

Everything was going great until we started to notice that Scarlett was having periodic episodes of grimacing and slight twitching.  This happened once before, and anti-reflux medication was given, which seemed to solve it.  This time, she is already on the anti-reflux meds, and pain medication did not stop it.  I immediately considered seizures.  I waited as different doctors and nurses (and even I) thought I may be overreacting.  Then around 8 pm, I realized it was more frequent, every few minutes, and each episode lasted about 30 seconds.  Shudder, eyes clamp closed, grimace/frown, ticking head...then nothing.  Her eyes opened as if nothing had happened, no disorientation, no pain, no elevated heart rate or respirations.  Very strange.

Finally, a nurse sees it from beginning to end.  She sends in another nurse, who sees it all and calls neurosurgery.  They send a resident, who essentially says, "Huh."  I hate when they do that.  She calls the attending doctor, who then order immediate seizure medication and an EEG first thing in the morning.

First of all, I hate when doctors order things for my child without seeing her.  I usually protest, make them send a doctor who has some influence or power, before I allow new medications to be given.  Or I cry; either way, they send someone to look closer, examine and explain.  I did this (without the crying) and they made sure it was safe to start the new medication.  However, I was not convinced it was seizures.  There was no physiological response beyond the movements.  She didn't seem hurt; she smiled in between, even did it with a bottle in her mouth.  I e-mailed the Neuro-Oncology team, who are, above all, advocates for Scarlett and know her best, so that they could be involved as soon as they were on site.

This morning, rounds began early.  The general surgeon came to check her belly incisions.  All good.  The neurosurgery resident came to check her head incisions and to ask more about the episodes.  Fine.  Then, the EEG technician came.  We did a 30 minute EEG (which takes twice that long to set up and disassemble.) 
The sleepy girl ready for EEG.  Each colored wire is attached to an electrode glued and taped to her head.

Then the full neurosurgery team came (at least 10 people) to check her out, remove bandages, admire their own work, and tell me what was (and was not) happening for the day.  Then Audiology came to test her hearing, as is mandated by the study protocol.  Then neuro-oncology came.  Then infectious disease.  Then...someone else, I don't remember anymore.

The problem came with the audiologist:  there has been some hearing loss caused by the chemo.  We knew it could happen, but I wasn't really expecting much this early on.  More tests are being ordered before any decisions are made or final results are determined, but it was the final blow that made me lose my cool.  

Our fabulous, fantastic, wonderful, awesome neuro-oncology nurse practitioner Trish came to break it all down for me.  I fell apart as soon as she came in, just not ready to handle one more single thing.  I wanted to barricade the door, not let anyone else in to tell me bad news or make Scarlett cry.  She brought in the doctor, and we all sat and just talked about what was happening, how hard it has been for us.  Their official position:  the EEG did not show seizures.  Even if she does have them, it is not going to cause any damage, and medication can manage them.  The hearing loss is minor if at all at this point, and, compared to the alternative, it's manageable.  Long term, if she needs hearing aids or speech therapy, we can easily make that happen and she can function perfectly well.  They calmed me down, reassured me that she is doing well by all accounts, that they will be cautious and conservative, and how excited they are to celebrate her 6 month mark.

Things finally quieted down.  We will move to the other unit as soon as they have a bed ready.  We will take it easy over the weekend, then begin Cycle 3 on Monday.

PS - My mom found chocolate covered strawberries for the nurses...definitely a good choice!

18 comments:

Danielle said...

((hugs))

Jodie said...

As a community nurse, I cannot tell you how much I appreciate your words as Scarlett's story unfolds. It is very important that health care workers listen to parents and your ability to advocate for Scarlett clearly articulates this. God Bless you and your family. You are an inspiration to anyone experiencing life crisis.

Lisa said...

Brandi- you are nothing short of amazing! God bless you in your tireless and determined protection of your daughter. She has a wonderful mother! I hope the next "go-round" is much easier.

Sylvia said...

Oh Brandi, I wish there was something that I could say or do that would make this even a tiny bit easier on you and Chris......
sending you a great big hug!

Know that God is there with you and He can handle all your frustrations and even your anger and your questioning, lean on Him.

Sarah said...

what a long, scary day!! I am so sorry honey. I can only imagine how hard it is to hold your head up and keep your cool around every person telling you your baby has this that and the other. I continue to pray for healing. keep hanging in there.

andthatsfamily said...

What a day. You must be absolutely exhausted. Scarlett is such a strong girl and you are such a strong Momma too. Your strength and Scarlett's determination amaze me every day.

Stephanie said...

My goodness mama, I wish I oould somehow kidnap you for a day and do fun girly things like get pedicures and go wine tasting or something and forget about all this going on in your life for just a little while!

You are doing awesome, Scarlett is VERY lucky to have you! Keep up the good work :)

Jared said...

I love the way your post ended and that Scarlett is doing ok- we still think about you and check in EVERY day and are always praying for you guys.
It has to be so exhausting. Hang in there- your sweet little girl is 6 months old and you will look back on this someday and it will seem so foreign to what you'll be experiencing with her then. She is beautiful!
Love, Jen (October 2010 mom)

Jamie said...

I am so sorry that you have had a horrid day. I am glad though that she isn't having seizures and that she has minimal hearing loss. That is good news. I hope that things get better quickly and that you can go home soon!

bobwendi said...

Brandi, I am so sorry that you had such an emotionally challenging day...more so than usual. Sending big hugs your way! :)

Thank goodness they did the EEG so quickly. My son had one last month, and it sure did take a while for the tech to put all of the electrodes on his little head. He looked just like Scarlett does in the picture once they got all of the electrodes on him. Thankfully, his EEG didn't show seizures either. He hasn't had any episodes since late February. Hopefully Scarlett's episodes will just stop and never return! :)

My son and I will continue praying for you and Scarlett and the rest of your family. God Bless and Happy Easter! :)

p.s. Good choice on the chocolate covered strawberries! I'm sure they loved them! So thoughtful of you!

Maddy said...

Very frightening; we are praying for you and your baby girl tonight. I'm glad she seems happy through all this & that, even though things seem so hard and unfair right now, you still get to have your beautiful baby girl giving you smiles and love. What more proof does anyone need to know that God is in this?

Sweet dreams for you and your daughter tonight,
Maddy

Jen said...

Bless your heart! I am amazed at how strong you have been/are being through this whole ordeal. Scarlett is very lucky to have you as an advocate for her and her care. Keep your head up lady. Glad to hear she is doing well this evening and you all are able to have a little quiet time.

Shawndra said...

Scarlett has the best mommy in the whole world! She chose you because you are so strong and willing to fight for her! You are amazing and the two of you are going to get so far together!!

I'm sorry you had such a rough day. Just when I think I'm having a hard day with my 3 kiddos, I need to remember that you are dealing with so much more that I could never imagine. I hope you get some rest and some peace and just some time to chill and love up that beautiful baby girl.

You are so freakin' awesome! Truly an inspiration and I think about you and Scarlett every single day!! ((HUGS))

Shawndra in Oregon

Michelle said...

My heart is with you.

Rebecca said...

Thinking of you always. You are doing a wonderful job Mom! And Scarlett you are just amazing!

Amber said...

I've been following your blog for some time, I found it on The Bump and was intrigued by your story. I just have to tell you that your daughter is so lucky to have you as a mother, and Chris as a father. You are so strong and amazing for her when she needs you to be. She must get her strength from you!

Amy said...

In terms of hearing loss, I was diagnosed with a 25% hearing loss in one ear and 35% in the other at the age of 5. This has not been a problem in my life yet and I will be 30 this fall. I do not wear hearing aids and have never been told I need too. I don't know how severe the hearing loss is with chemo but this is just a bump in the road for her. She is very strong willed and will not let this "bump" slow her down.

Christine said...

Hi - I also follow your blog (referred from BabyCenter). Your family is amazing. I'm rooting for you all. What I wanted to say was that the shuddering may be Sandifer's Sydrome, which is due to reflux and is not a neurological condition (yea!). My baby has it and it is scary but pretty harmless. Good luck to you all. :)

Christine