We're Free. . .

Some of our stuff.

I realize, whole heartedly, a title like that is one of celebration, and it most certainly is.  I was all packed and ready to go the night before we were to be discharged.  I had to go out and buy a new suitcase to fit all of the things we had to move with, that hadn't come with us. . . had made Tray so excited to move he helped me pull of his sheets to ready his bed for the next patient.

Trayvon with his Transplant coordinator (inpatient) Lisa.

But, moving always comes with an overwhelming sense of sadness, fear and trepidation.  Nurses are responsible for your child.  Doctors see you child every day.  Meds are prepared and checked for you.  Vitals are checked numerous times a day.  Your child is under the watchful eye of many instead of one.  I'm the one now.  I am responsible for all that was managed before by many.  And the people you talk to daily, befriend, are no longer there, you're thrust into the "new kid on the block scenerio" all over again. 

As we sat downstairs and waited for our "ride", having no idea what would show up.  Tray and I shared a large pretzel from the stand outside the hospital doors.  Before his transplant, that salty treat from Heaven was completely banned.  He became bored waiting for our 1:00 ride around 1:40 and states that we should rent a limo. . . oh baby, if only I could, if only I could.  Finally, our "well known for being on time company" arrives with a 20 passenger, wheelchair accommodating, bus!  I thought this is a bit of overkill, but after loading our many, many items, realized, this was the perfect ride for us. 

As we drove through the city going from the West side to the East side and then downtown, we watched all the people walking their dogs, feeling the wind on their face and enjoying life.  I couldn't help but think, this is all Tray is going to have to do from now on too. . . that and take a boat load of meds and see the doctor umpteen hundred times, take his temp daily and never, ever eat star fruit, pomegranite or grapefruit, and have cardiac biopsies hundreds of times in his life time. . . but, other than that, he can live a perfectly normal life!!  How awesome is that.  No oxygen, no IV's, no restrictions on running. 

We arrived in front of the Ronald McDonald House.  It's a House designed specifically for children with Cancer.  We are odd men out here.  After signing 3 forms that I am not bringing the black plauge, or the measels, mumps or any other itchy contagious disease I get my room key.  I manage to stack our stuff in such a way that it manages to all fit on one of the bellhop carts at the front of the building.  It's not a pretty tower of crud, but it's OUR tower of crud.  I carry the new suitcase which is, for whatever reason, heavily leaning to the right.  We get to our door, the key works, I open the door and I pause. . . it's so small.  There is no refrigerator.   I know that doesn't sound like a big thing.  But having food close at hand in the hospital was one of the ways we got Tray to eat more and more.  Now, we had to put all of our belongs in the kitchen.  In a numbered bucket in the fridge and freezer and in a cabinet, numbered for our room.  4 flights down. 

Our new home away from home.

Tray however, saw the room, the building, the large display of activities posted in the lobby and was extatic!  And rightly so.  As soon as he unloaded his coat and I drilled him on our room number, he left for the next 2 hours to explore all that this great place has to offer.  I, instead, sat down and cried.  I was looking at bags and bags of stuff that needed to be unpacked, food that had to go to the new kitchen and the 18 new bottles of meds that were all my responsibility now.  I know that when I get the room in order, all will be well, but that seems overwhelming at times. 

After 2 hours, Tray returns happily to tell me all about his great finds.  He also finds the room done.  We go together to get some hand soap for the bathroom, some snack foods and a slice of pizza since we had only had a pretzel for lunch.  We eat in the kitchen, unload our new goodies and then he's gone yet again. 

Our new medication regime.

Seeing him so active and happy has turned it all around.  I headed back, put our new lavender soap in the sink and get out the new med bins and begin filling the first weeks.

This week, Tray and I return on Friday for his first outpatient clinic visit.  He will have labs with a regular poke, as he no longer has his PICC line.  We will find out the day of his next cardiac cath for next week.  We will also be able to walk out of the building and return to our new home. . . YEAH!!!

This was done a while back. . . read at your discretion

WARNING:  This is a pure, unadulterated rant.

Why do kids die?  Why, in our amazing capacity to send pictures and words through the air and have them show up on some phone in a country 5000 miles away, can we not figure out how to cure a simple disease that we know the beginning, the middle and the end too.  Why??  I just don't get how it's possible to build a car that can drive for 60 miles after plugging it in and we can't find a way to replace an enzyme that is missing from our DNA.  I just don't get why.  It's mindboggling how much money is spent on creating a better phone, a better computer, a better car, a better pizza, a better anything. . . and yet children are dying at a rate that makes me want to vomit.  I've been surrounded by children who have, who are, or who may die most of my adult life.  I taught in a preschool in the Bronx, built specifically for the hundreds of HIV+ babies that were being born, but were not being allowed into the public schools.  I lost 13 children to AIDS in just 2 years.  My class was only 12 students.  In the first year I went to 6 funerals, the second year 7.  Half of my class died each year.

Then my son was diagnosed with cancer.  I was thrust into another world where kids were dying all around me.  In Joshua's first year of treatment, I went to 5 funerals.  Why???  Why do I hear on the forums that the children are still getting the same treatments that my son did 14 years ago for newly diagnosed brain tumors!!  Where is the progress???  How have we remained in the stone age of medicine when the world around us is accelerating at a speed unfathomable to most of us?
My son has a heart defect.  20% of the kids with Congenital Heart Defects will die before their first birthday.  WHAT!!!  Are you kidding me?  Where is the progress on the surgical front, the medication front?  How is it possible that we still can't fix something man has seen and studied for over 300 years?
My daughter has bipolar. . . 60% of bipolar adolescents go on to attempt suicide.  60%!!  How is it possible we haven't found a way to help the brain of these children?  I don't know the outcome of success for that 60%, I don't think I really want to know.  I struggle with the knowledge of what's wrong, but there have been no new medicines that really are designed to meet the needs of pediatric psychiatric disorders in over 15 years.  Really???  No one out there cares enough to stop kids from killing themselves?

We live in a country where there is a battle at hand to insure every woman has access to free birth control or to end a pregnancy if she decides it's not the "right time".  At the same time, there are currently hundreds of drugs on a critical shortage list that will literally cause children, moms, dads, sisters and brothers to die without them.  Contraception is free to EVERYONE - Don't have sex.  Methotrexate - a main staple for the treatment of leukemia is now no longer sufficiently profitable to continue making. . . WHAT???  Are you kidding me?  Where can a person go into any drug store and buy Methotrexate to save their life, like you can for birth control?  They can't. Where can a child wheel into a drug store and buy the missing enzyme they need to continue to live.  They can't.  What drug store can a parent walk into and buy IVIG so their child doesn't die from massive invasive infections?  They can't.  All of these meds are on the critical shortage list.  Kids are being denied or short changed on their treatment due to these shortages.   This country has it's priorities so upside down.  I'm not left, nor am I right.  I am pro-life and pro- gay marrige.  I believe in social programs that help the poor but I also believe in making everyone have to compete in order to promote capitalism.  I am a progressive-conservative.  I am common sense. I watch left media and right media.  I see the agendas on both side and both have great points on each individual item, but when you look at the entire agenda of any one party, you find the idiocy in both sides glaring back at you.

Here's the government list of known drug shortages.  Peruse it in your leisure time, it's shocking.

  http://www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm

Ok, my rant is done, but, I'm hoping it fires some people up.  I am in a chronic fight for my children's lives.  I pray that we'll continue to be on the front side of medical technology, however far it has advanced.  But, I also know that I have watched and held children who weren't on the right side of that technology.  Who didn't have the drugs, or access or surgery they needed.  . . not because it was denied them (though in many cases it is, just due to companies failing to produce enough) but because we the drug or surgery doesn't exist yet.  If only our ability to advance in the world of technology could move at the same pace in the world of cancer treatment, or enzyme deficiencies, or immune deficiencies, or, or, or, or.

33 Days Ago. . .

33 days ago I walked along the stretcher that held my son as he was wheeled to the awaiting team in the Cardiac Intensive Care Unit at the Morgan Stanley Children's Hospital of New York.  33 days ago, I kissed his head and reassured him that he would most certainly NOT "pass away" while getting his long awaited heart transplant.  33 days ago I watched them return with my son, attached to more wires than I could count, more pumps than I could imagine and more blood running than I've ever seen in my life and with oxygen saturations of 100%.  That 100% was the confirmation I needed that indeed, he did receive his new heart.  His old one could never have gotten to that number. 

Over the course of the next 20 days I stood next to his bed, watching, caring for and assisting Trayvon as he embarked upon the monumental recovery process in front of him.  I cried as I watched the sulleness and depression set in, as he screamed through some very painful and scary medical procedures and as we left the safety net of the CICU to move to our new room on the regular floor.

We fought together to help him get up, walk, remove chest tubes, get blood taken, deal with severe diarrhea and to try and eat anything at all.  My heart was aching that he was still so fragile, still feverish, still not well even after all I had tried to do.  I turned him over to my loving husband for his 2 week stay.

While I was away, Tray was started on antibiotics.  Peter began the painful process of getting him to move and walk despite the pain and fatigue.  He was forced into eating or face a feeding tube.  His line was mismanaged and clotted, causing undo stress and confusion.  He had a cardiac cath, a CT scan and several x-rays.

Tray also responded better to Daddy's demands and he began to see that it DID feel better to move.  His OT and PT started and he began to feel the benefits of eating again.  His severe diarrhea started to clear up.  His attitude improved and overall, he was better.

14 days later I returned from my 2 week break home to be greeted by a happy, walking, IV free, son who was now clearly realizing the true magnitude of his gift of life.  He hugged, greeted and loved on everyone that came down today.  He happily walked all over with his sister and brother and requested a Southwest Salad from McDonald's tonight.  He looks, and feels so much better.  He is still thin.  His numbers are still off, but improving.  He is ready to make the big move to the outside world.  I am too.

We are awaiting the results of some special tests for rejection that they run after each catheterization.  We should have those in by Wednesday and Ronald McDonald House has been notified of our impeding discharge on Wednesday.  He is ready to go and walk to his new home away from home.

In the past 33 days, I've only been with my other kids for 14 days.  While home,in an effort to not focus on the "what if's" here, I kept busy.  I did more cleaning and repairs in those 2 weeks home than I think I have done in the past 2 years.  I was sad that I didn't get more done, but have a running list of things to do on my next break home.  LOL  I spent valuable time with my other amazing kids. I did 2 heads of hair with umpteen braids on both.  I talked with teachers, I went to doctor appointments, I filed papers and I completed paperwork that had backlogged.  

33 days ago, I had no idea where we would be right now, and truthfully, I could never have imagined how good things would be.  Over half way to home if all goes well.  Imagine where the next 33 days will find us!!??

Seeing the Light???

There is light. . . I'm home and yet I am seeing the light through the calls, texts and emails from Peter and the team.  I see the pictures of Tray and the facetime calls of a young boy who is more vibrant, talkative and expressive than the entire time I was there.  How refreshing, reassuring and elating.  I am still worried.  But, it's a controlled worried now. 

Tray is now in PT and OT and is walking more daily.  He fatigues remarkably easy, but is far more willing to push through the fatigue than he was previously.  He is also trying to attend school for 2 hours daily.  It's been a struggle to get all of the time in due to various factors.  The other day he had pain and needed pain meds, this made him fall asleep.  Then next day he began sneezing violently and was shivering. . . worried about fever, the teacher cancelled the rest of the session.  Then today, Peter dropped him off, went for a walk, only to get a call that Trayvon had vomited in the classroom.  His work has arrived from Liverpool Middle School.  He now has homework daily so he has work to do even when he misses school, poor Tray.  :-)

Calories, fever, weight, are all things we're still monitoring.  He is taking more calories daily, mostly in the form of Ensure Plus drinks.  Pete has been successful in getting him to take a slice or two of pizza, a hamburger, a chicken wrap, etc.  They stay with him sometimes, other times not.  Overall, progress.  We'll monitor for a bit longer and if we can't make MORE progress, then we'll revisit the need for a feeding tube temporarily to supplement what he is taking. 

His fevers have continued.  His labs show some sort of problem.  His platelets are in the millions.  Yes, that's very high.  Normal high is 450,000.  He is 1,625,000.  This is a sign of infection.  His CRP and ESR, both are inflammatory markers, are very high and very slow to fall.  For those who know what the numbers mean, his CRP was as high as 200, and today was 81, still too high.  Normal is less than 10.  His ESR was 80 and then jumped to 115.  Infectious Disease was called in.  They started his Vancomycin back up.  No one knows what is the source but agree there is a source.  So, he'll stay on the antibiotics for a full 7 days.  Then we'll wait. . .and see what happens.

But, despite these little things.  He is happier.  He is funnier, He is stronger.  He is my old Trayvon. 

It's remarkably hard to not be there, to watch over all aspects of his care.  To monitor his meds, do his showers, talk to the doctors, be his mom. . . but, daddy is doing an awesome job which has allowed me to focus on my babies here.  I've enjoyed getting everyone ready for school, going to the appointments, following routine.  It is good to be home.  I have been tearing things apart and cleaning fanatically.  Whenever there is a child in, about to go in, or just coming out of the hospital, I start nesting.  I find it funny, that the urge to clean is so powerful.  To fight it is useless as much as I want too!  LOL  So, the kitchen cupboards will be reorganized and cleaned, the baseboards are completely scrubbed, the animal cages have never been so clean, the walls are washed, shelves have been purged, and rooms cleared out.  I'm tired, and it's a good tired.

So, I am seeing light.  I am seeing my baby finally emerging from his fragile new cocoon. I can envision the future with Trayvon running free on a soccer field with the wind in his face.  His beautiful, oxygen tube free face.  I'm loving the light. 

Moving Nowhere Slowly. . .

It's been a while.  The truth is, I had hoped we'd be running the halls by now.  I had my hopes too high.  Tray had his hopes to high.  We are nowhere near running and actually, we've begun to stop even walking at this point.  

There is an infection somewhere.  The numbers tell us so.  However, the immune system that we rely upon to point us in the direction of the infection, is now gone.  You and I, we get a red mark, pus, fever, sore spot. . . something, that tells us, this is the spot, here is the place you need to treat.  Trayvon's cells that are responsible for that job, have been destroyed.  So, based on those almighty numbers we rely upon so heavily in the hospital setting. . . we know the infection to be true, but don't know where.

He feels bad.  He hurts.  He's frustrated. He can't sleep and therefore, exhausted. This is what I expected, and yet nothing like I expected.

I am also torn between two worlds. I miss the rest of my family so much. They miss Tray and I as well. I need my husband's loving arms around me, to hug me and tell me all is fine, like he does every time we go through something big. But, they are 4 hours away.

We are suppose to switch this weekend. Peter is coming with a few of the kids and I will drive back after a short visit. Peter's brother, Guy, has graciously agreed to drive with him and I so that I don't have to drive the entire 4 hours back. Anyone that knows me, knows that I am not a good long distance driver. LOL

But the thought of leaving Trayvon at such a fragile time is tearing me apart. My mother instincts say that this is where I need to be, but my heart is screaming to see my other kids.

We had counted on the long stay, not the long time of feeling so bad. He had been so vibrant up on the CICU and clearly, something changed the day we moved down here. His demeanor changed, he hurt more, he is sadder, he sleeps less and ate nothing. The eating improved over the past few days, but only because of a threat of a feeding tube. He is eating out of spite, not desire. But, I'll take it.

He is on the cancellation list for tomorrow for a cardiac cath. If there is a cancellation they will take him in, look at his heart, take biopsies. They will also have surgery come and look at his lungs which, on x-ray, are still suffering post surgical trauma. They took a big hit as did his kidneys. Surgery may go in and try to drain and culture the pocket of fluid that continues to hangout in his right lung. They may CT scan his chest and abdomen. However, the contrast from the CT scanner is very hard on kidneys and Tray's are not happy right now, it may tip them the wrong way. Another fine line. They have started antibiotics, but the one that he probably needs is toxic to the kidneys as well. So we wait. We look. And prayerfully, we find the problem and address it head on, with as little intervention and drugs as possible.

If there is no cancellation then he will as scheduled, next week, Wednesday. Unless he looks worse or the numbers dictate otherwise.

So we wait. Based upon the findings in today's labs, the possible catheterization tomorrow and how he looks and feels, we'll make the decision to continue with the planned switching of the guards.

5:30 am, finally asleep and now he needs to awake for a chest x-ray :-(  Not feeling well.