Tuesday, February 21, 2012

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. 





4 comments:

  1. Thank you so much for the updates. You all are in our prayers every day and night. I would love to help in anyway I can. Trayvon keep up the good fight. I sure love watching a miracle in progress. Kelli McLaughlin

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  2. An amazing journey for Tray and your amazing family. Just know you are in my thoughts. Please hug each other tightly. Love you guys. Jasmin

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  3. I remember Trayvon as a happy little boy in my Sunday school class. I'm so glad to hear he is doing well with his new heart! Prayers are with you and your family as your journey continues. Sandy McGillis

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  4. Thank you so much for the update on Trayvon. He looks fantastic! I am so happy for all of you. I love you guys & miss you. Colene Burnop

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