Sunday, September 11, 2011

MRI...or not

We arrived at CHOP for Calli's MRI around 7 am, to a full parking lot- literally NO spaces I am guessing due to change of shift :)  I drove around for 15 minutes trying to find a spot and again ALL of the handicapped spots were taken by NON-Handicapped people.  This irritates me to no end....  When we finally got in the hospital, we went where three nurses has told us to go- and all lights were off, no one was at registration desk.  I flagged down two surgeons who really had no clue where to direct me.  Fine, that is ok, I KNOW this hospital,and where every MRI suit is, so I will just go there myself....doors were locked, so, I called the main number and asked them to put me thru to the MRI suite...I got a machine!  So, I called back and asked her again, to put me through to a desk, where I know someone is sitting, and I know there is a phone, and a person who will answer it...after all, they are waiting for us :)  So she did, and I got through,and they met us and escorted us back to the sedation suite, and wondered themselves why someone was not at the registration desk.

After a bunch of paperwork, they were ready to start her IV, and asked where i would be waiting during the test, and I told them that I would be sitting in the room with her for the test- they looked shocked.  What?  Don't all other mom's sit with their children during MRI's?  No, not for 4 hours, they told me it was ok to go get coffee and a magazine.  No thanks!  If she has to be in there for 4 hours, I will too.  I do not mind, & she wants me there....even if she is sleeping.  I am her mama, that is my job.

They said that they will be giving her IV meds to sedate her...with the same breath they informed me that the meds they give put most of their teens to sleep for hours, and if needed, they could administer more meds through her IV, if she looked like she was arousing from her deep sleep.  So, another IV line was put in, but it hurt and swelled right away..but they just kept in in anyway, saying they probably would not even need to access it, because again, these drugs usually keep most teens asleep for a while.

OK....I had previously informed the nurse on the phone last week, that this was tried before- back in June at PENN...when they tried to fit her for her mask & set up for radiation..... and it backfired, she had never stayed asleep, or calm and it had the reverse effect on her, making her confused and irrational and they had to send her back to CHOP to sleep it off- which she did- for 10 hours!  The nurse last week told me that she would be put to sleep, not sedated.  So someone changed their mind about that, and even tried to tell her that she could do it without any meds.  I looked at them, and asked- "Do you think you could be strapped down to a table and put in a long small tube, and have a big head piece on and padding in between your ears and it to keep your head from music or movie allowed..for 4 hours?"  No, did not think so either.

The Nurse assured me that this concoction was very different and that most teens are so knocked out that they become drunk, and have to sleep it off for an hour.  So then, the Nurse practitioner came in and started talking about if they had to give her more meds, that her airway would collapse and they would have to take control of her breathing, and she then informed me that it probably was not going to work out anyway.  Well then...way to be positive.  My then calm and rested Calli become anxious and afraid.  THANKS!

I calmly walked out to the desk, and informed her that she was completely out of line for speaking that in front of Calli, and that NOW she was pumping adrenaline.  She is 14 not 4, understands everything you are saying,and you have now made her anxious.  The doctor, who was standing there, apologized for her and agreed, that it should not have even been stated to either of us, let alone in front of Calli. 

So what do you think happened when they gave her the meds that put most teens to sleep for hours?  WIDE AWAKE.  push more meds.  She slept long enough to get her positioned on the MRI table, then she WOKE up, confused and loopy, asking if the test was over!  PUSH more meds- nurse has now run out of meds to give her before the test even began!!!  4 hours of scans to go, doctor comes in and says that she CAN give her more meds, but she will have a hard a long recovery & they have to watch her airway-.  Fine, we have to do this test. 

She proceeded to wake every 15-20 minutes in the middle of a scan, and they would have to re-medicate her & start the scan all over again....the machine broke down twice, because it thought the tests were taking too long, which they were, so it needed to reboot twice.  Then we moved her to another MRI machine,and tried again.  Each time she woke, she was more and more afraid, confused, irritated and freaking out. 6 hours later, they had only finished half of all the tests.   She was done, we were done. 

We went back to recovery, and she was so confused, and strung out- she had so many meds in her.  She was crying and crying for Mike, and would not allow me to leave her side(not that I would), she wanted me close to her, holding her,and consoling her.  Which I did gladly.  It took hours for her to finally wake enough to drink, but she was still so loopy. 

The doctor came in and informed me that Calli could not come back to sedation, because, well she had such a strong will and high constitution that their meds do not work on her. Yeah...duh.  So, she is flagging her and now, she will need general anesthesia for her MRI's.  ugh.

I got her home quite late, and Mike helped to to hold & stabilize her and get her into the house and in bed.  She was not listening, could not comprehend what we were saying at all and just needed to sleep it all off.  Today she is better, but still confused.  She remembers a little bit, wanting her daddy, and being in the tube, not understanding why she was not asleep.

All in all, the day stunk!  She woke later last night, and We all watched 127 hours.  It is a true story about Aron Ralston, a mountain climber who got pinned against a canyon wall when a boulder became dislodged, crushing his right forearm . He had not told anybody of his hiking plans and knew no one would be searching for him. He spent five days sipping his small amount water, & trying to free his arm. He realized that in order to free the arm, he would have to cut through his bones.  His tools were dull and did not work.  When he ran out of water, he videotaped his goodbyes to his friends and family, carved his name, date of birth and presumed date of death into the canyon wall, fell asleep and gave up.   He did not expect to survive the night & found himself still alive at the dawn of the following day.

From there, he broke his arm bones & amputated his arm with a two inch knife. After freeing himself, he  climbed out of the canyon by rappelling down a sheer wall one-handed, & then hiked out of the canyon for miles until he ran into another family hiking..he kept moving until the rescue helicopter came for him.  He never gave up, and still is a mountain climber today.

Mike laughs at me, because lately I am finding lessons in everything.  Aron Ralston, this movie..I am finding a lesson there too.  He tried everything he could to free himself, to conserve and save his life...and then gave up, said goodbye to his family and friends and prepared to die.  When he awoke the next morning....he had a fresh epiphany- there is another way.  IT will not be easy, it will hurt more than anything ever has before.  He will lose something he he needed before...but he would live, he would survive.     Things must die to live...things must end to begin.  This theme is still coursing through my veins.

To never give up HOPE, to always BELIEVE, to SIMPLIFY LIFE, to LET GO to START FRESH

...... sometimes we have to leave things behind that we thought we needed to survive....letting things die that must die....sometimes it is an arm, or hair, or an idea, a way of life, a habit, a cure, a thought, a way we did things before, family or hurts, it is painful, excruciatingly painful, but we are dying to survive, to live.

I feel like writing a poem....

Wash our minds
With Your words each day
Help us to forgive 
Always  to HOPE and pray

Bless those that curse us
Help them to see...
We have a new normal
It is as abnormal as can be
Conversations are tough
Always turning to a fight
Only capable of handling so much
We turn to take flight

Away from it all
Back to our small
Which is really quite big

Shifting our focus 
Beginning fresh & new 
Having the courage
To do what we must do

Dying to live
Pain inside
Strength to let go
Not run and hide

Hard things have a cost
Losing our life for gain
Lord help us today
To stay simple and plain

Our life is so complex
Too lofty for us to understand
Please keep our thoughts 
On what You have planned



  1. Okay, you are still a poet :) thank god for small blessings.
    Sorry about the bad day - they happen in this world...
    but tomorrow will be fresh and the next test will be a success.
    A good mama stands by her kids- you are doing just that.
    I pray that peace enfolds your entire family - the peace that passes all understanding. getting there... :) xxoo

  2. When I walked into church yesterday - we all know it was THE "9/11" and that was primary on many minds, mine too - so many asked how Calli ws doing. I update them on our church prayer e-mail. We are not young folks, we live in an adult community in FL and many have more time to pray because of that. We have those who have survived and those that are still in the battle and it almost seems that when a request for prayer for a youngster (the term covers many) they get on their knees and it is almost as some know you and your family. I hardly know you but am excited to share the faith that rises up out of these very most difficult circumstances. God bless - we will continue to pray.

  3. I would be embarrassed to tell your family the things I worry are always in my prayers. May the God who parted the sea and rose His son from the grave be with you today and every day....He is able. <3

  4. Please know that you are in our thoughts and prayers, everyday!

  5. So, so , sorry that you had to go through that. You are a warrior Mummy, standing beside your daughter, the God given job He has placed before you. Your family continued to be in our thoughts and prayers.


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