Saturday, April 21, 2012

Times are Changing. . . an older update that I forgot to post. LOL

Well, Peter and Tray are wrapping up the finally days of his initial transplant stay in NYC.  They had a blast at the Museum of Natural History yesterday.  Today, maybe ChinaTown.  Maybe.  Tray is trying to soak up all the play time with his buddies he can.  Once he returns home, he'll be lonely and he knows it.  Can't go to school.  Can't participate in most camps (until the heart camp at the end of summer) and his friends will all be busy with one or the other.  He's happy, healthy and full of energy, with no where to expend it.  He's going to need to learn how to live life without the confines of medical restrictions other than not being in crowds. Times are changing for Tray.

Peter and I drove past a school and they had posted Kindergarten Registration days and times. . . for the first time in 17 years, we don't have anyone waiting to go to kindergarten.  We were both saddened by that.  A big change that had snuck up on us when we weren't looking.

Nettie is ready, or so she thinks, to move out.  How different life will be with her not in the house.  She has been with us for 18 years.  18 years of watching, helping, teaching, letting her fall, and scooping her back up.  She defied the doctors, she defied us, she defied all practical modern medical wisdom.  She is alive and well, and despite our reservations about her preparedness, she is looking to move out into the big world.  Times are changing for Nettie.

Joshua continues to seize.  He has been doing it for so long now, it doesn't faze him.  It does us.  We've tried all we know and have researched so many options and nothing has been successful.  He continues to seize.  Yet, he laughs every day, talks about what he wants to do when "he grows up" and who he'll be like.  It both heals and hurts to hear him talk about the future.  I don't know what it holds for him, but he will continue to get older, thus the day he needs to move out will also come.  Next year he will be in the main high school building in 10th grade.  Yes, he should be a senior.  But, he is oblivious to this fact and that's just fine with us!  He will be with new kids, new teacher's, new 1:1 aides.  We will be making major medication changes in the near future.  We pray they are for the good and not bad.  We will revisit the possibility of another major brain surgery.  Only time will tell.  Times are changing for Joshua and here's hoping it's all for the good.

Marriela is the antithesis of change.  She despises it, and balks loudly when it occurs.  She likes her routine and even that is not routine enough sometimes.  She is going to 5th grade next year.  She has been given nothing but the most dedicated of staff at her school to get her through the 4th grade, without having to move to a different program, thus another school.  Next year will be her last year at this school.  The last year she'll be able to walk the halls to do her learning, the last year she'll be able to be escorted, lovingly, down the hallway by 3 teachers to the special "area" where she falls asleep under a weighted blanket in a bean bag.  The last year, she'll go to the playground and play tag with typical peers.  I worry the very most about Marriela.  This school sees her for who she is and can be, not what she says and does.  She apologizes sincerely, but can't stop herself from lashing out when frustrated.  She truly believes all that children say, for good and bad.  Resulting in many sad moments as she misinterprets a comment as something mean and many angry moments when she feels slighted by someone, who has no idea they have done anything at all.  When we say good by to her teachers this year, I feel that things will never be the same or as good for Marriela again.  It just isn't possible to hope for that much to continue.  Times are changing for Marriela and she's not going to like it!

Cody is going to second grade.  My goodness, second grade.  He is going to be fine.  Cody doesn't see change as a problem and deals with it by just rolling with the punches.  He is a friend to all in his class.  He is a good brother to all in our family (though he and Marriela are doing a lot of head butting lately!).  He is a lovable and happy child whom is loved by all of his teachers.  He makes us immensely proud.  Change is coming for Cody, but he could care less.

Sergio. . . where to start.  Sergio has made many changes recently and more are to come.  This month, we'll be restarting some feeds in his tummy.  He hasn't had any food in his stomach in over 2 years.  In 2 weeks, Sergio will be 6 years old.  SIX years old!!  To see him, you'd know why this is so hard to believe.  To know what he's been through, you'd know why this is so hard to believe.  Most certainly a milestone, many did NOT think he would make and I'm beyond thrilled that even I have been proven wrong. He scared me more times than I can count . . . and I can count pretty high, just ask Cody.  Sergio is in a beautiful state of routine right now and we'll be rocking that boat with the feeds.  But, he's managed all that has been thrown at him and more, so I have great hopes this will be same with the change.  Next year, he's repeating kindergarten.  He will not care, nor even notice.  Change is coming for Sergio, here's praying he handles it well. 

Peter and I will be looking at what is next for us, our family and the major transition back into the work force.  It's hard to commit to a job when you have a child on a heart transplant list, another undergoing major brain surgery, another one living in and out of hospitals for more than a year and another who can not go to any sort of childcare facility.  So, with much of that behind us, Peter and I are exploring our options.  Maybe returning to school for me.  Peter may continue to his work from home, with a much more aggressive course of action, or maybe he'll revisit moving to a company.  So many things to consider, so much change.  Not a great fan of change.  I really have a hard time, though do fine once the change has occurred.  I am actually far more stressed "talking" about it, than the actual act of change.  Does that make sense??  But, in the end, we all have to roll with the changes and we're finally in a place to face them head on. 

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. 

Sunday, April 1, 2012

"Look, I got my speed back!" . . .

Tray finally came to bed at 11:05pm, after Teen Night here at the Ronald McDonald House. He bounded in and proudly announced "I got my speed back!"  He then went on to demonstrate this new "speed" in our very small room, running tiny little sprints from the door to the couch and beaming after each one. He was winded, he was panting in bed, he was wound up, but he was so very happy.

He hasn't been allowed to run for over 2 years, now, he feels like he's an Olympic class athlete.  I wanted to take him to the Brooklyn Aquarium today, nope.  He wanted to stay and run with the kids and play laser tag, with a young man who works here, and looks just like Chris Rock.  Tray is by far the oldest and also by far, one of the happiest.

We had a great trip home last week for 36 hours.  We fit in so much.  A visit to his school to get some new work.  A trip to his old elementary school where he was received like a king.  We were a family, if only for a short time.  We celebrated Annette's 22nd birthday with both a family party and by taking her out with Tray for a lovely lunch the day we left.  I cuddled in bed with my baby, Cody.  I folded clothes and the boys watched movies together in their room before bed. . . just like old times.

The trip too and from. . . could have been better.  Could have been worse.  Could have not been at all.  So we're not complaining.  We used the Megabus, and at only $25.00 a seat one way, you couldn't beat the affordability.  What it had for going for good prices, it lost in comfort.  But, again, we were home and we were happy to be there. 

Tray has found his new self.  He has discovered his ability is no longer impaired by a disability.  His heart and body can work as one now and that has been an eye opener for him.  I took him to a gym with the Ronald McDonald House.  He was paired with a wonderful trainer at the gym in the Kid Zone.  I encouraged him to try out the treadmill and he looked at me with complete paralyzing fear on his face and said, "I can't do that, remember how bad I did at the doctors?"  His only time on a treadmill was the dreaded, and highly unsuccessful attempt, at a stress test at the cardiologist's office.  I reassured him this was different and he could go at any pace he felt, as well as stop at the touch of a button.   He tried it and by the end of the day, had spent over an hour, voluntarily, on the once dreaded treadmill.  He also did the eliptical machine, the rowing machine, some free weights and the frozen yogurt bar. . . all very successfully.  That was the day, Trayvon realized his heart was perfect and all he needs to do now, is get his muscles into shape, the rest will be a breeze.  After being told NO RUNNING for over 2 years, he is running, and loving it. 
Tray in his Spartan helmet

We are going home again on Wednesday after his appointment.  We were scheduled for his cath and biopsy for next Wednesday, but there was a cancellation and we were able to get it done on Friday.  That works well, as we'll now just go right from the appointment to the bus station. Peter will return on Easter with Tray for his appointment on Monday.  His cath went very well and his numbers have all imporved, showing that his heart is relaxing finally and settling into it's new home.  The doctors have reassured us, that the pressures would come down, they always do, but until we heard the numbers ourselves, we didn't really believe it.  Tomorrow we'll hear the results of the rejection studies. 

His last week of twice weekly visits is the 20th, and we suspect they'll do another cath before we go on that day.  That will be three weeks from this last one.  Then we'll return home for good.  His current plan is to return weekly for one month, twice monthly for one month and then monthly for another 6 months.  His caths will spread out to every month and then every 2 months as his pressures settle down and as long as he has no rejection issues. 
Awaiting for our yummy Shrimp and Crabs at the Spanish restaurant across the street. 

We have swapped out one set of medical problems for another, BUT, these problems do not impede his quality of life.  He can be free now to run, play, live and love without the oxygen, IV's, and worry of a severely damaged heart.  He will now have to worry about rejection, infection, and eventually, the fact he will need yet another heart. . . but, till then, we're blessed to see this side of the light. 

Do you have "YOUR speed back?!"