Bumps in The Road. . .

Every road we travel has its bumps. Today Trayvon has hit one. It's not a big one, but sometimes those small bumps can give a pretty good jostle when you're not prepared.

We actually slept pretty good from 1:00am to 6:45am when x-ray showed up for his daily picture. I was shocked to see the time and realized neither one of us had stirred in almost 5 straight hours. After the lovely photo session was over, we both nodded off for a bit longer until the nurse arrive to do her morning rounds. Day has begun.

I had thought, due to all of the sleep, it was going to be a good one. Til we hit the bump.

His chest tubes were leaking heavily, he was coughing non-stop which was adding additional agony to the already painful tubes. Good day, fading quickly. 

The coughing, pain and fever have taken him down for a bit. 

Nurse returns, removes 2 IV's from his right hand. One had been deeply placed between the pinky and ring finger. It bled heavily and hurt badly to have the pressure applied to stop the bleeding. Then the coughing started again with the crying.

Cardio-Thoracic surgeon arrives. Chest tube in right lung is not working. It is kinked and needs to be repositioned. Sounds so simple. It actually is, but is also profoundly painful. Tray was shaking from head to toe by the completion of the project. Orders another chest photo to check for placement and pneumonia.

Finally settled down after a some serious monkeying around with those pesky chest tubes.

Transplant Dr. arrives. Tray is doing well overall, but we have some things to work on. I ask what is the definition of “fever” in a transplant patient. . . 100.3 orally.

1 hour later. Thermometer reads 100.3 exactly. 1 hour later, 101.0. Antibiotics started. Cultures drawn. Tylenol given.

Tray has not really eaten in over 12 days. He does not like the hospital food at all. He's limited as to what he can have from a restaurant and he can't think of anything he wants from the store except tuna fish. He has had a tuna sandwich every day for the past 3 days. Yesterday I was able to get him to eat a hamburger from McDonalds as well. Today we talked him into trying the Ensure juice boxes. He liked apple flavored and drank 2. They are 200cal each. Good start. 

Yet another untouched meal.

As the day went on though, he recovered from the bump, settled into the ride and is ready to move along.

After a couple of hours in a chair, his fever came down, he played his computer game, and even talked to his sister and brother.

Now, he's settled in again for the night. . . hoping to skirt around the bumps tomorrow.  We shall see.

The Walls. .

There are far more than four walls here.  There are hundreds of walls, and beyond each of them, in this hospital dedicated to children, there are a hundred more stories passing by every single day.  Tray is only one of those stories.

Today we are awaiting a private room to open down on the regular floor, this is a huge move forward.  It's unnerving to leave the comfort and safety of the CICU, since being here, I've watched my son go from being in severe heart failure, to receiving a heart transplant followed by several intense days of intense medical intervention, followed by several days of painful procedures.  All the while being cared by a wonderful team of nurses and doctors.  I have literally no complaints about any of the care Trayvon has received.  That's saying a lot for me, because I'm a nightmare to have as a parent.  I like things done well and done well the first time.

I like to stand in the door way and watch life on the unit.  The stories are as varied and awesome and intriguing and sad as the heart defects the kids have.  2 week old babies having their first of a three stage repair to correct Hypoplastic Left Heart Syndrome.  A 1 month old who was admitted at a different hospital for what was thought to be pneumonia, only to discover his heart was in a violent, erratic rhythm that was threatening to kill him, he is now being evaluated for a heart transplant as well.  An 8 week old who underwent a simple cardiac cath, who then went into cardiac arrest in her room while nursing with her mother.  She too, may need a new heart.  The 16 year old that had to have a defibrillator implanted to be sure his heart doesn't all of a sudden stop, and the 5 year old that is in severe heart failure but isn't a transplant candidate, this is his life for however long that may be.   The stories are incredible and heart wrenching.  It's a hard place to be for too long.  I'm ready to move despite leaving behind the safety net of nurses.

These walls hold so many happy outcomes and so many tragedies within them.  They are painted a horrible sherbert green in an attempt to make it child friendly, but the CICU is anything but child friendly!   Trayvon is awaiting his room, the room his awaiting is currently occupied by a little person who has received the word that today is their day for a new heart.  As soon as they go to the OR to put in that precious new heart, Trayvon will transition downstairs so his room can be cleaned in preparation for that child to come and be cared for in the CICU.  What a wonderful circle of life!!

Trayvon is going to write a card for the child and leave it in the room for the parents and eventually the child to read.  We don't know how old or what gender the reciepient is, but I know all too well the intense feelings the parents are feeling right now!!

So, we will move from the walls of the CICU, to 4 new walls on the 6th floor.

The Playground and Rejection. . .

Rejection has lots of meanings for different people and different events.  Rejected by a sweetheart, rejected by a team, rejected by friends. . . the list goes on.  However, in the world of transplant, rejection has a much more specific and sinister meaning. . .

I'll use the analogy of a playground.

Before the transplant, the immune system is happily playing in the playground (Trayvon's body).  Everyone is friends, and only occasionally does someone get out of line and cause a problem (infection).  There are big kids and little kids on this playground.  The little kids (b-cells) are trained well by the older kids (t-cells).  As long as everyone is recognized and not an outsider within the very distinct boundries of this playground, everyone goes about their own business.  Among the older kids there are a variety of personalities, but most are friendly and not overally aggressive.  However, there are some bullies, as there are on every playground.  Those awful kids who think they know and rule all and will squash those beneath them with cruelty.

Then we transplant. . . it doesn't matter what it is that is transplanted, but in this case, it's Trayvon's beautiful new heart. . .

In the first days after transplant, incredibly strong medications are used to kick the older kids right off the playground.  We don't want them around to teach the younger ones any tricks or encourage any nonsense.  It is hoped, that virtually all of the big kids take a hike but if any hang out, we hope they aren't  bullies.   With just little kids around, they may get curious and "check out" the new guy in town, they may taunt, tease or even just try to play, but with some subtle reminders from the teachers (his anti-rejection medications) they will just move along and ignore the stranger all together with no further thought paid to him.

But, if a bully hangs around, or several older kids find a place to hide and come out to check out the "new kid on the block", you begin to have a problem.  If a big kid finds the new kid, they will, without a doubt, assault the poor thing with everything in their arsenal.  In addition, they will recruit the little kids to do the same and "teach" them how to get rid of the intruder.  This is called rejection.

It's a lonely existence for Trayvon's new heart.  It is not to be recognized, it's not to be befriended, it's not to be looked at, or acknowledged in any way.  The anti-rejection meds are there to ensure this and provide a type of protection, by constantly ridding the playground of any older kids and scolding the younger ones whose curiosity gets the best of them.

If rejection occurs, and it's above more than a simple acknowledgment of the heart by the immune system, immediate action must be taken.  In most cases, when it's just the little kids (b-cells), you can trick them by using steroids or IVIG to redirect their attention and to send them on their way.  However, if the big kids get into the picture, then heavier guns, higher doses of meds and hospitalization is required.  The immune system can NEVER get the upper hand or it will tear his beautiful new heart apart, cell by cell.  So, we now live in the world of fine lines.

Suppressing his immune system sufficiently to render it helpless in recognizing the heart.  However, not suppressing it to the point it where it will not be sufficient to fight a simple illness and allow things as basic as a cold to become life threatening.  He will take lots of "prophylactic" medications aimed at preventing an illness from happening in the first place.  Tray will wear a mask in public for several months.  He will not be able to shake hands or hug for a few months.  He will need to have biopsies done frequently to be sure it's all happy and hunky dory on the transplant playground.

Eventually, the immune suppression is reduced tiny bit by tiny bit to allow enough big kids on the playground to fight infections, but not enough to be able to detect and harm our precious gift.  So they monitor his blood levels daily of his anti-rejection meds.  His kidney function and liver function are followed very closely.  His heart is looked at on echo regularly to try and catch problems early.

This is the way of Trayvon's new life with his heart.  But, he'll be able to run, play, live and be free of wires, oxygen and IV's, so the trade-off is well, well, worth it. 

Still Counting. . .

 2 updates, 1 day (note:  today's blog was done yesterday, but not posted until today due to a computer glitch). 

Off to the CathLab we went.  No expectations of anything alarming.  Reassured by the doctor, echo looks great, no reason for concern. . . numbers should be great.

Promised Tray that the annoying catheter in his neck would be gone and he'd only have an IV or 2 in his hands

Promised Tray that today was the day we were going to our new private room on the floor.

Returned from CathLab with a new fancy triple lumen central line in his neck.  Promise 1 broken.
Restarted on Milrinone again.  Must stay in CICU for 3 more days at least.  Promise 2 broken.

The almighty numbers that rule this place of the very tiny to the very large dictate everything.  Trayvon's pressures in his heart were not where they need to be.  His heart is working too hard at this time.  A hard working heart can result in a tired heart and that is a definite no-no.  So we will continue to help it out.  I've been reassured that this is normal.  That this is what they anticipate happening, but typically the echo shows the issue before catheterization.  Not so for Tray.

22 is Trayvon's "wedge" pressure, goal is 10.
18 is the right atrium pressure, goal is 8.

1 pump to 4 pumps in less than 2 hours.

1, 2 lumen catheter to 1, 3 lumen catheter

0 IV's, to 2 IV's in his hand

10 meds to 14 meds.

Med levels too high, doses reduced.

Med levels too low, doses increased.

We we reassess that beautiful heart in a week and see if the changes have improved the numbers.  Those wonderful/awful numbers we rely on to determine every step of the journey.

In the mean time I had to brace for the disappointment that was going to be coming.  Tray was sad.  His neck was in agony from the catheterization.  He had the IV in his neck that meant he still couldn't sleep on his right side, his favorite side.  After some morphine and conversation and reassuring that we are still going to the floor "once a bed is open for him " uh um (fudge there), he settled in and resigned to his new fate.  Add in 2 dressing changes to the 3 chest tubes and he was done being messed with. 

But, as I have said, 2 steps forward, 1 step back.  More numbers, but as long as the forwards outnumber the backs we are A OK.  I shared some fries from Wendy's with him and a bit of Cherry Coke, big hit!!  LOL  Excited to find that he can order Turkey sandwiches at will and a snack pack arrived just for him.  Plus, the computer cord that was needed so badly, arrived in the mail today, so he was back up and running on his game. . . much happier now. 

Till next big update. 

By the Numbers. . .

I found that going by the numbers is a fantastic way to capture our journey here thus far. 

Trayvon excitedly waiting for the air ambulance to go to NYC.

7 days ago - we got a phone call that changed everything for our son.

50 units of blood later, Trayvon was finally somewhat stable.

16 IV pumps used to manage the vast number of drugs and fluids needed to keep him alive until his precious new heart and his body became friends.

3 different breathing machines later until lungs are strong enough to handle basic breathing.

3 chest tubes to drain the fluid accumulating in his lungs. 

1 large IV in his jugular vein to administor dozens of meds. 

1 large IV in the artery of his right wrist to monitor blood pressures from within.

1st of 5 doses of powerful anti-rejection drugs to completely supress Trayvon's body from recognizing its new gift.

5 days ago - Trayvon is answering questions and begging for food while still on the vent.

30/20 are blood pressures you do not want to see on your child's monitor, ever.

16 breaths per minute the ventilator breaths for him.

4 days ago - Trayvon is off of all breathing assistance, 3 machines leave the room.

10 IV pumps now in use. 

80/40 is our new normal blood pressure. 

3mcg/kg/min is the rate of the Dopamine needed to keep that new magic number so stable.

3 Days ago - Trayvon is sitting in a chair.

5 IV pumps now in use.

100/50 is our new normal blood pressure without the dopamine.

1st time in 18 months, Trayvon is oxygen free.

2 days ago - Trayvon leaves room for the first time.

4 IV pumps in use.

450cc of drainage from his chest tube.

6th echo done since admission.

4 chambered heart beating beautifully!

1 day ago - Trayvon takes his first steps (3 feet)

3 IV pumps in use.

1st smile since just before surgery.

3 days of no eating.


Today - Trayvon walks around entire CICU without assistance.

Off Milrinone for the first time in 5 months.

1 pump left on IV pole.

3 chest tubes continue to drain heavily.

7th echo done since admission.

4 chamber heart continues to beat beatifully!

3 meals eaten with no complaints of tummy pain.

2 Tylenol is all that's needed to keep him comfy.

So there it is.  The transplant process thus far and the amazing way, numbers simplify just how far Trayvon has come in just 7 short days.

Tomorrow is our first biopsy.  The first of hundreds over the course of his life.  The biopsy will be our first glimpse into the heart and how happy it is in its new home.  Trayvon's immune system has been destroyed in a specific way (killed off his t-cells) with the goal of allowing some to grow back slowly over time.  Without t-cells, Trayvon is susceptable to virtually every germ.  He will wear a mask when in public.  He will not return to school.  Purell will be our new best friend. 

But, by the Numbers we will go and continue to be amazed at how far he has come in such an incredibly little amount of time. 

The Roller Coaster Ride. . .

Anyone that has spent any time in the hospital for anything knows a couple of things:
1.  You spend all your time hurrying up, just to wait. 
2.  Hospital time is different than any other form of time in existence.  It can move at the speed of light, and it can move at the speed of stop.  Some days you feel like you've been here for weeks and others, for hours. 
3.  Sleep is optional.  The days of doling out sleeping pills to patients is over and now, you have to beg plead an borrow to get any sort of sleep time assistance.  It makes no difference if the patient has been awake all night, thus the caregiver has as well.
4.  There are smooth patches and rough patches every day.  The size of the patches may change, but something good and something bad will happen every day in a hospital.  How you handle them is the key

So, we are at day 5 post transplant.  Trayvon's recovery is nothing short of amazing.  If only he realized it.  He is depressed.  He is frustrated and he is tired.  Tubes extend from his body and are draining stuff he refuses to look at.  The precious IV in his neck which has saved countless blood tests, has tape on it that is bothering him.  He new heart beats so hard it scares him.  He is, as he so aptly expresses, "overwhelmed".  The realization of what he was to endure with the process of transplant is foreign to him and now he wants to know why we didn't tell him about all of this.  He's mad. 

My heart breaks as he asks me these questions.  I'm sad.  When he has a "temper tantrum" about something, I become frustrated as well.  When he has pain, I'm mad.  We're both feeling the sting of reality today and though it doesn't belittle the progress or the awesomness of the gift of life, it's hard. 

He only wants to sleep now.  In the day.  To avoid everything.  But then he's up all night and therefore, so am I. 

Today we are going to "make him" get out of bed and interact, play games and express his feelings on paper.  He is fighting the idea with all he has.  He's depressed. 

We will be visiting with a counselor today or tomorrow to work through some of these emotions with Tray.  I will have to work through mine on my own. 

I miss my family, my husband, my children, our life, my happy go-lucky boy.  I know, this is temporary.  I don't need pep talks about the other side, the light at the end of the tunnel, the good will outweigh the bad, etc, etc.  I know all of this.  It doesn't help with today. 

So, day 5 and the emotional roller coaster has dipped a bit.  I'm sure tomorrow it will be something different.  For that I'm happy.

Til next time,
Renee

A Valentines Day Miracle

Sitting in Church, listening to a lovely sermon by our Pastor as a thought drifted through my brain. . . "I wonder if I would feel the vibration of my phone in my pocket if a call came through."  Then, the phone vibrated.  I felt it.  I looked at it and my heart fell about 4 feet to my toes.  It read "blocked", which could only mean one thing on a Sunday morning. . . it was the call we were waiting for. 

After getting the info from the NP on the other end of the line and pushing the thoughts of all of the unfolded laundry I needed to tackle before leaving for who knows how long, I calmly went to the sanctuary and informed Trayvon that his call had come and we needed to leave a bit early to get some things together.  I was remarkably calm for such a momentous moment.  Because the last time the call came, I was anything but calm. . . I was actually quite hysterical and looking back, quite a sight to behold I suspect.  This time though, I felt peaceful. 

We left Church after gathering Sergio, Trayvon, Nettie and Marriela.  We went to the pharmacy to get some meds that were waiting, then to the store to get some allergy meds for Joshua and some diaper cream and hair supplies for Sergio and Marriela.  I unloaded them from the van, and after confirming with all of the kids that there was a good chance that this was the night Trayvon would get his new heart, went to work getting things around the house done. 

There was some speculation that the donor, that wonderful human that gave the greatest gifts at the moment of their family's greatest saddness, would also be able to donate his lungs.  However, Trayvon's team felt strongly that the lungs were not ideal for transplantation and we just needed to hear the "all clear" from the donor's hospital.  So we waited for the final confirmation that we were a "go".  In that time, I gave a hair cut, 2 baths, did one head of hair, folded and put away 4 baskets of laundry, prepared two med bins, started a crock pot of chicken wings for dinner, made all the beds and helped Cody and Marriela fill out all of their Valentienes Day cards. 

At 5:00 we heard that it was going to happen and now we needed to start the arrangements for transportation.  Despite several reassurances that the transportation was all set. . . it was anything but.  I made several panicked calls to Medicaid transportation, as they were the ones responsible for making the arrangements.  The woman told me I needed to call back Monday through Friday during normal business hours.  WHAT!!  I remained calm (have no idea how) and explained that the heart transplant couldn't wait until they opened the next morning at 8:00 am.  Could I please speak with a supervisor.  Phew, the supervisor knew what I was talking about.  However, he didn't know how to activate the orders. . . calling someone else.  Phew, that person knew how to activate the orders. . . but the air ambulance they had approved, wasn't available immediately. . . WHAT!!  Calling someone else.  FINALLY, we received word that all was worked out.  We were to leave Syracuse at 9:00pm and land in NJ at 10:00 catch an ambulance and be at the hospital by 11:00.  Best laid plans never work out. . . it snowed for the 3rd time the entire winter, heavily, near Pittsburgh, PA where our flight was coming from, grounding them for over an hour.  In end, we left Syracuse at 10:15, landed in NJ at 11:00pm and took one hell of an ambulance ride from NJ to New York Presbyterian Hospital where we were happily recieved by the CICU staff at 11:30pm, a full hour and a half late. 

At 1:30am I found myself standing next to my son's operating table trying to reassure him that this is the moment we've been waiting for and all would be well.  They started the meds and his final words, "What if I pass away?" came out of his mouth and then he was out, with a look of sheer panic on his poor little face.  I left that room in a million different peices.  He was getting the gift of a lifetime and yet his departing worry was one I refused to acknowledge.  In the end he left me to wait with that very horror imprinted on my heart and brain.  With nothing more to do, most everyone asleep, I went back to his room, laid down and slept for 4 hours.  At 5:19, the doctor awoke me. . . "His heart is in, beating well and he is doing great."  Less than 4 hours after saying good-bye, he was already laying on that table with a brand new heart. 

7:30am he finally arrives in his room, I'm running on adrenaline at this point.  He looks good.  I was so relieved.  His heart rate was 130, which is normal for a normal heart, but his old heart would never have been able to handle that. . . it was wonderful. 

Since then, we've been on the roller coaster of recovery, as anyone knows about ICU's.  There is typically 2 steps back and 1 step forward.  Sometimes, it's 3 steps back and 2 steps forward, but eventually, in most cases, the forward steps outnumber the backward steps you find yourself staring at your miracle thinking. . . how did you do that?!

There are no words to express how much love I have for a family and a person I don't know.  Their day of sorrow was our day of rejoicing, such a mixed bag of emotions.  One day, I hope to express to them the immensity of their gift.  Let them see just what they've done and how much their loved one still lives on.  Tray will not be shy with his gift.  He wants to run, play, live, love and he will do all with the same enthusiasm he did before his transplant, only this time it will be without limitations, oxygen, IV meds running 24/7, IV lines hanging out all over and medications that ruled his life.  He will make sure that he makes that donor live through him. 

So, the day before Valentines Day, our son recieved a true gift of love. . . a new heart.  The story continues. 

Making Room for Memories. . .

As a self proclaimed amnesiac, I find myself trying to go back and recall those lost memories that seem to have alluded me.  It's amazing, as I sat here to write them down, just how stuffed full my head is, with apparently useless information, and just how unfull it is of the things I need to write of.  What a dilemma.  Do I purge some of the useless stuff, and thus fill your poor heads with it, in an effort to regain some access to those lost recesses of my mind, or do I just leave it alone and try to pull out the "stuff" through all of the other "stuff".  Hmmm. . . I say, PURGE!

So here goes, as a fore warning, some of this info did appear useful at some point, so maybe, just maybe, you'll find it interesting and useful too.

1.  WhiteOut, does not "wash" off, nor does any known kitchen or medical product remove it without a great deal of friction. . .and as a side note, children do not like friction. So, don't let your child paint themselves from head to toe in WhiteOut.
 2.  You should never try to carry hot grease across a kitchen in a Rubbermaid disposable bowl while wearing  running shoes with vented toes.  It hurts like the dickens and the stain on the shoe is everlasting.
 3. Children can fall down a flight of stairs, look like they've killed themselves, only to surface with a bent pinky finger (numerous times apparently in life), an adult, can only fall once and inflict numerous injuries to themselves while looking like they never touched a step on the way down.  Akin to the "bumbles bounce" analogy in Rudolph, "children bounce", adults don't.
 4.  Don't teach children the phrase, "Shut your pie hole." unless you are properly prepared to face the teacher to whom your child has used said phrase.  
5.  Don't put a fake tattoo on a child's butt cheek in an effort to conceal it from his teachers.  The child, thinking it is an awesome tattoo, will drop his pants happily on his school bus to share his artwork and earn himself a 2 day stint of school bus suspension. 
6.  Using the "leash" on a child is fine.  Unless, said child is black, you're white and the place is Disney World on Martin Luther King Jr. Day.  Though, very needed at the time due to said child's inability to refrain from literally attacking the characters and running without a single thought of losing us, it was not received well throughout the park.  I may need to keep that piece of knowledge, now that I've thought of it.  Hmmm

Ok, that may only be six things, but it's enough to make a start on extracting a few deeply placed memories.

Where to begin with recessed memories is hard to determine. But, as I sit here and scan through photo after photo of my life and the amazing, silly, loving and sometimes downright terrifying, I have just realized something. . . I do remember.  I do remember what I feel I need to remember.  I see a photo and I am transported back to that moment.  What a wonderful realization.  Maybe I'm not a true amnesiac after all.

My Dad's last family outing with us.  Miss him so much.

Sergio's first visit to our home, he was slightly larger that he is now. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Cody, thinking he was funny spraying me with one of our favorite "toys", 60cc syringes filled with water.  Awesome water guns!

Daddy hanging out with his boys on the steps that don't exist anymore. 

My sweet Nettie.

As I sat here typing this, I've had 3 children yell, "I love you."  I've made breakfast for 5 kids, hugged my husband and gave him a kiss as he walked out the door, folded 3 baskets of laundry and now sit and help my son play a game on the Ipad.  I am feeling loved, needed and despite not being able to recall some random memory or event, I know that I have many stuck in this crazy head of mine.  So I'm going to just sit back today and look through the couple of thousands of photos and soak in all those "lost" memories.  There'll be some tears, lots of laughing and some moments of quiet reflection, but I will revel in the fact that I'm not suffering from amnesia after all.