Saturday, June 16, 2012

Deal or No Deal. . .

My son is a game show junkie.  He has it bad.  He plays them on the computer, the ipad, and watches the GSN any chance he gets.  He will recruit me or Peter if we wander to close while he's on the computer. Then we're commited to playing a rousing game of Jeopardy, Deal or No Deal or Family Feud.  He thinks Steve Harvy is hilarious.  So do I as a matter of fact.  Unfortunately, there is a cruel irony.  The shows, especially Family Feud, result in seizures.  We don't know why. . . maybe the blinking lights, maybe the rapidly turning words, maybe too much thinking.  So we end up playing real life Deal or No Deal.  "Joshua you can't watch the Family Feud for the next week to let your seizures settle down."  "Buuuuuuuuttttttt just one show?  I promise, even if I lose, I'll only watch one show."  Now, I should mention, there is no real winning going on here, and he rarely can answer a single question, so how the "winning" comes into play confounds me.  However, the negotiations begin and he then says, "Deal or No Deal."  The humor is not lost on anyone in the house who knows him.  Despite the risk, we typically cave.  He seizes without the shows at times so he might as well be happy when they come, right??

After a week long stay in the hospital to monitor and record his seizures, we learned some valuable information.  The subclinical seizures (those that are recorded on EEG but don't transpire into visible seizures) are coming hundreds of times a day.  His poor brain is under attack even when we can't see it.  Initially, those seizures were all being recorded from the right side of his brain, where we had already put him under the knife for more than 16 hours total, just a year ago,  to remove massive chunks of his frontal and temporal lobes.  The seizures were coming from an area directly behind where the cutting had stopped.  Very frustrating.  Wednesday he had a typical "visible" seizure, I pushed the little button.  Then he stopped.  He never stops at one.  Something was not right with that seizure, but the doctor was thrilled and announced to Joshua "You had a perfect seizure.  It matches the subclinical ones perfectly from the same spot on the right side of his brain."  Then came Thursday.  Joshua performed beautifully, with seizures coming one right after another.  It was awful.  But, God was showing the way.  As he always seems to do when we need him the most.  As hard as it was to watch him seize, and as hard as it was to stop them, even after 8mg of IV ativan, it gave us the info that was missing.

Joshua is seizing from both sides of his brain.  The worse seizures, the ones we need to go away forever, are on the left.  Without removing more brain from both sides, we will not succeed in suppressing his seizures.  Deal or No Deal.  The doctor was crushed.  But, he wasn't willing to concede defeat.  We are.  It's a No Deal.

Joshua has survived a brain tumor, a 15 hour surgery to remove most of the tumor.  Lived in the hospital for 7 months undergoing grueling chemotherapy followed by a stem cell transplant.  Endured 31 rounds of high dose radiation to his 3 year old brain.  Withstood infection after infection due to a failed immune system as a result of the chemotherapy and had to start IVIG infusions.  At 9 years old, his seizures became our enemy of all enemies and they came, unrelenting, untreatable.  We began the IVIG infusions again in a desperate attempt to give him more than 20 minutes of seizure free time.  It worked, on all the types except the one that will eventually kill him.  The drop seizures that cause him to drop straight backwards into anything near him.  The ones that have resulted large holes in his head and the need for stitches.  The ones that require him to wear the stigmatizing, ugly helmet.  The ones that force us to never let him walk alone or go to the bathroom independently, ever.  The ones that if we don't intervene with heavy duty rescue meds, he will go into a coma.  We cured him of a brain tumor, but have so damaged his brain. . . But, at the time, it was a Deal or No Deal situation.  Would we have changed anything if we knew he was going to become severely developmentally challenged, have terrible seizures, become severely hearing impaired, go into puberty at only 4 years old, fight terrible infections due to a lousy immune system and he'd have another 16 hour brain surgery to try and stop the seizures only to fail monumentally? 

Yes.  We would have.  We wish we had more options, but this is still the treatment of choice for kids with this type of tumor.  Medicine is infinitely more advanced than it was 15 years ago, and yet it's woefully inadequate as well.

So, we sit, we play, we hold him as he seizes and laugh when Joshua presents a Deal or No Deal situation to us.  He has presented them to us his whole life and isn't even aware of it.  But, he's happy and that's all that matters to us. 

Saturday, June 2, 2012

12:54 AM thoughts. . .

12:54, something wakes me.  Probably Cody's nightly migration to our bed but I can't see him, so I'm not sure.  The house is so quiet.
Flashback 10 hours earlier in the day. . . I was just getting home from the hospital with Sergio who had just had day surgery to replace his G/J tube and a new central line.  That was a fiasco, as usual, and I was working out how to manage a new PICC line instead of a permanent central line, as well as 2 lumens instead of his single.  How one hospital can mess up things for the same child over and over is beyond me.  But, we were home.  Sergio has been running a fever for over 24 hours.  Saw the doctor after his surgery and had labs drawn.  He has an ear infection. . . something normal, yeah Sergio!  He was very hot just an hour after getting home.
Flashback 6 hours earlier. . . Marriela is exceptionally happy and energetic, despite the fact she has received her night meds an hour earlier, with no sign of slowing down.  Rest of kids are in bed, Marriela is bouncing happily on the couch watching a show we've never seen before (she found it on Netflix).
Flashback 4 hours ealirer. . . .Marriela is still very much awake, but now, not happy at all.  Very agitated, can't decide between a movie or her music, can't make her blankets work the way she wants, can't make her brain stop hurting.  Sergio's temp is now 103.4.  Praying meds will help.
Flashback 3 hours ealier . . . Marriela and I are laying down together in her bed trying hard to get her to settle down.  She is having a very hard night.  10:30pm, 4 1/2 hours after she received enough meds to get 4 adults to sleep for 24 or more hours, she is sleeping.  She remains asleep so I return to bed.  Sergio's temp is moving down.  Prayers worked.
Flashback 2 hours earlier. . .  My back and elbows are hurting a lot.  No choice but to take Motrin and a Unisom.
12:54, all is quiet on the Curkgang front.
It's overwhelming sometimes to realize that there are 6 "little" people in the house that rely so heavily upon you. 6 people that, for various reasons like age, illness, developmental challenges, mental health, will be dependent upon you for the rest of YOUR life.  What will happen to them when I'm not there.  Who will love these kids as much as Peter and I?  Who will work for 4 1/2 hours to help Marriela fall asleep, and help her work out her emotions several times a day and love her for who she is?  Who will let Joshua go to the bathroom 20+ times a day and answer his 1,000+ questions a day and hold him as he seizes and will be sure his needs are met as he grows up and wants to one day move out?  Who will be sure Annette's staff is always in place and the 3 pounds of paperwork a week are done, and make sure she is happy and healthy and getting out of life all that she deserves?  Who will be there to care for and love Sergio for whoever he is, and continue to demand more out of him than people think he can do, and not give up on him just because. . .it's hard?  Who will be there to help Tray manage his post-transplant care and handle all the potential issues that will eventually come down the pike, including, but not limited to, the fact that the average transplanted heart only lasts about 10 years?  Who will be there to encourage him to live life to the fullest, including, finding a career he loves, a wife, and maybe even kids!  And finally, who will be there to help Cody make sense of it all.  One day he will look around and it will hit him, that he isn't in a family like any other he has known.  How can we foster a continued relationship with his siblings if we're not here?   Who will work/fight with the doctors, the schools, the therapists, and every person or agency that works with our kids, to be sure My KID'S needs are cared for, not those of the service providers.  It scares Peter and I to think about it, so it's easier to not.  But recently, we've been hit with several deaths of people around our age.  When did people our age start dying?  I would love to do a will, but who would we leave the kids to?  No one family member could handle all of the children, yet, I can't imagine separating them at all.
I did a post on a Rabbit that's For Sale. . . For the Price of Love.  Many people have read the post, but no takers yet on my poor sweet rabbit.  Here she is, in my living room still.  How am I to find competent, loving, caring and dedicated people to care for my amazing children, if I can't even find someone to take a sweet, trouble free rabbit.
I hate waking at 12:54am.  To many hard thoughts come into my head and I have no answers to provide.
6:15 am, Marriela is awake and yelling about something.  I tell her she has to come to bed with me for a bit.  She does so, but not happily.  Within moments she is asleep.  As I rest between Cody and Marriela and listen to them breath, I know that I have the best job in the world.
Please pray that Peter and I live for a very, very, very long time.