Sunday, April 15, 2012

Crazy Little Thing Called Life. . .

Joshua and Marriela. 
6:00 I get a phone call, it's Peter.  Joshua has had 7 seizures, should we give his Ativan.  8 seizures.  Yes, give 2cc of Ativan.  9 seizures.  Slips in the med between seizures.  I sit helplessly by on the phone as Peter counts off the seizures.  Another one.  Another one.  Another one.  Should I give more he asks.  Yes, give another 1cc.  Another seizure.  Peter and I finally  figure out how to do FaceTime on our phones, so I get to sit helplessly by and "see" my baby seizing in the chair now.  Seizure number 17.  18.  Should we give one more dose.  Yes, 1 more cc.  The last dose allowed before having to call 911.  In all he has more than 20 seizures before the meds finally do what they're suppose to do. 

Tray is only one of several kids in our house dealing with stuff.  In fact, at this point, Tray is the healthiest among those with health issues. 

Life at out house is unusual, a bit unorthodox and never uninteresting.  It can be profoundly frustrating like last night watching a child seize and know there is nothing you can do to prevent it from happening again in the future.  It can be downright comical as you listen to Marriela's stories of "when I'm 30" and she owns all the cars owned by anyone that's ever visited, she's had twins. . . no wait, it think it's Chinese twins now, and she will put up a pink swing for her "real child".  It can be sad, as you leave yet again for another stay, at another hospital, for who knows how long.  But, for the most part, it's just as normal as yours with a little smattering of crazy added.  

Just 2 months ago.
Today, looking over the river.
Tray is now over 2 months out from his transplant.  It's truly hard to believe that we got the call over 2 months ago.  Today we walked for almost 2 hours straight.  His legs are sore, but other than that, he did fantastic.  He is now off to play with his friends here at the RMH.  He will start a blood pressure medicine once we get home tomorrow because his big, new heart, beats too hard for his little body.  He'll grow into possibly, or maybe he'll just need a little support.  Otherwise, he is doing fantastic.  But, we don't take this for granted at all, as the child who was transplanted only 11 days after Trayvon, is suffering from all sorts of complications.  He gets 3, 10 hour infusions, weekly.  He is rejecting his heart.  We know this is, and will always be, a possibility for Trayvon.  We are truly blessed he is doing so amazing.

Just one of many days in the PICU.
We await word from neurology on how to help control Joshua's unrelenting seizure disorder.  A PET scan has been ordered, but insurance doesn't like it and wants more justification.  I can't say I blame them, they paid for a huge surgery as well as a month long hospital stay to no avail.  What makes them think a very expensive test will show them anything more.  I can't assure them it will.  I don't have an answer and, at this point, neither do his doctors.  I don't know what else to do for him.  We need to get him off some of his meds, but even that, takes an admission because he'll seize a lot and need IV rescue meds.  So, we await their decision and the doctors to write more letters to justify a test, that no one can say will help at all.  But, to not do it, leaves open the unanswered question, what if there IS something we can do. 

So we wake up each day and smile and love our children and live this crazy little thing called life, one day at a time. 

1 comment:

  1. One day at a time sometimes is even too long, such as during seizures. Sometimes the next breath is work as we look on and feel helpless. I cannot say I fully understand your challenges, but I most certainly understand your love. Thank G-d for you and Peter, not only for the kids, but for each other and from me, for a reminder of all the challenges our days might contain.