Hospital Update

It's been a long few days, but I have to say, as tired as I am, Alex truly gives me strength with how strong she is and what a trooper she is.  She has been through so much the past week and she still manages to be happy.  Don't get me wrong, she gets frustrated and unhappy, but if I was poked and prodded the way she was I doubt I would bounce back the way she does.  Anyway...before she was hooked up to the video monitor, she looked like this...

Afterwards, she looked liked this:

Still happy....

Her 24 hour test started around 11AM.  The machine that she was hooked up to showed her brain waves with a side video of her.  The only problem of being hooked up to the video monitoring was that we had to make sure that she stayed in the little video box so that if something showed a seizure, the video would show what she was actually doing or what her facial expressions looked like...so there was no getting her out of the bed to put her in her wheel chair to play or to eat, which was hard for me.  It's kind of hard to see, but the video monitoring looked like this:

Not sure if the picture does it justice, but it's kind of rhythmic, which is a good thing.

Around 10:00 last night she pulled out two of the wires that were connected to her head and the on call technician had to be called in to reconnect her.  Alex was sound asleep when she came in, and as hard as she tried to be quiet and gentle, Alex wound up waking up and was WIDE awake for a few hours after.  Her neurologist  came in at 11PM to check the video to see if he could see any abnormalities on the video from the day, but unfortunately when the tech came in to hook up the wires she had to pause the recording and when she did all of the video from the day downloaded to a computer so he couldn't review anything.  Bummer.

I have to say I absolutely LOVED Alex's day nurse, Miranda.  She was AWESOME.  She had actually worked at my pediatrician's office before she became a nurse, and had suffered from seizures when she was a child so she GOT it and was just so compassionate with Alex.  Unfortunately, I was quite annoyed with the night nurse assigned to her.  It was so important to have her asleep and get a good reading of her EEG asleep, yet she came in every 2 hours to take Alex's temperature and blood pressure.   She had a heart monitor on, she had a pulse ox on her that was monitoring her respiration's and pulse, so what was the point in waking her up and skewing her test?  I could see if she was in for a respiratory issue or something, but for heaven's sake she was being VIDEO monitored!  Ok, off my rant...

This morning, because of all of the interruptions during the night she was up extra early at 5AM and by 7:30 this morning she had pulled out 8 of the wires...which caused her EEG to look like this...

Not good.  So they called another tech back in to reconnect her.  Holding her down (after holding her down for three blood draws, having a catheter done, an IV line  and a mini EEG in a three day time frame) had not been an easy task, and she was already extremely frustrated from being in her bed for over 22 hours without moving, so we made the call not to rehook her.  We had 22 hours of recording so I felt confident that if 22 hours of recording hadn't captured anything, unhooking her, from what I can only imagine where uncomfortable wires, a few hours early probably wasn't going to show any epiphany. 

Clearly she was happy to be "free"!

 Once all of the wires were removed, with all of the glue and tape they used to "try" and hold the wires in place she looked like Medusa! :)

By the time her pediatrician came in to discharge us I had already cleaned up her room, packed up all of her stuff, unhooked her from the additional wires that were monitoring her, got her dressed and had her in her wheel chair - it was obvious we were ready to go home.  And from the look on Alex's face, she was ready too! 

A HUGE thank you to my mom and dad for coming up to the hospital each night and staying with Alex so I could run home an shower and have a quick dinner with Aaron and Zach.

I know this has already been a long post, but I have to share one more thing.  On the second day that we were in the hospital, I went to the little community kitchen that everyone on the pediatric floor shares to heat up Alex's food and I met, and had a long conversation with, a man named George.  We briefly exchanged the obligatory niceties that parents on a pediatric floor do, and then got involved in a more in depth conversation.  George was from South Africa and was in the process of obtaining Visa's to the US for the "American Dream".  When his family went for their mandated medicals before they could enter the States, the Dr's in South Africa said his son, who was 16 years old, 6"2 and 215 pounds was sick and not cleared to enter the US...he was shocked.  To make a long story short, George's son was diagnosed with a very rare form of stomach cancer.  He had surgery, and by the time he reached the US the cancer had spread to his liver and lungs and his son was a mere 100 pounds.  His son was in the Pediatric Intensive Care Unit, a place that I spent a month with Alex.  George shared his story and his faith with me in a tiny kitchen probably no bigger than my bathroom. His son is dying, there is nothing they can do for him, I can't even begin to explain how George and his story touched me.  Last night as George changed shifts with his wife and was leaving the hospital he came into Alex's room to meet her, blessed her and quietly left.  The only thing I could think of today as I wheeled a very happy Alex out into the cool breeze and sunshine is that I was so lucky.  Yes, we certainly have our challenges with Alex, and our life is harder than most, but she was leaving with me.  She was enjoying being outside and the sunshine on her face.  I was so happy to be taking her home, yet all I could think about was George and how he wouldn't be leaving the hospital with the same joy that was in my heart.  He would be leaving without his son.  The four long, sleepless nights I just had suddenly paled in comparison.