Please say prayers (major prayers) for the toughest kidlet I've ever known :( :(

Discussion in 'The Watercooler' started by Mattsmom277, Mar 8, 2010.

  1. Mattsmom277

    Mattsmom277 Active Member

    I've posted here that I was raised in foster care. My foster mom is my "mom" to this day. She is amazing and her children are too. Her eldest daughter, my foster sister R, is the same age to the day as I am. She's a terrific person, a Special Education teacher, mother of 3.

    R's youngest son J is only 2. He was born with major heart problems and shouldn't have survived really. He has been through surgeries and been on tubes and machines always yet is developing pretty darn age appropriate and seems a really happy thriving child in spite of all of this. they knew one day he'd need a heart transplant. I think they thought it would be much later in his life.

    On Thursday he was in for a surgery on his heart. Following the surgery, he had steady bleeding behind the heart and they took him back into the OR. The little fighter was in the OR for I think it was 20 hours. They had intended at that stage to give his heart a break and hook him to a heart/lung machine (life support). Sadly, it was not going to work out. They had to actually REMOVE his heart entirely. Literally he has NO heart. He is on a machine that only a couple of adults worldwide have ever had, and he is the first ever child to have this done. Apparently some German doctor is here in Canada to handle his care (thank goodness!). Without this specific procedure, he would have passed away that night.

    He has a completely mechanical heart. He has apparently no pulse, no blood pressure etc. The parents have blogged it is very surreal. They briefly have wakened him a little to judge if damage was done during the 20 hours of surgery. It seems he has not had a stroke etc and came through good in that regards.

    For now he is being kept alive by this machine. He is back sedated again. He has been bumped to the top of the heart transplant list. Sadly, a heart had come available but was too large for his little body. So they wait, and they pray. If a heart isn't available soon, they will operate AGAIN to install a Berlin heart for longer duration while praying for a heart. They are expressing such pain to know that get their miracle, another family must lose a young child. I can't imagine at all what is going on in their hearts and minds right now.

    They are told that little J is going to be written up in medical journals now and will be "famous" (quoting the german doctor) for having this situation of living with no heart at all. I don't understand exactly what they have him hooked to that allows no blood pressure or pulse etc. Surreal for sure. But I'm so grateful this little trooper is hanging in there and being given a chance to wait for a miracle that I pray is coming.

    I wouldn't wish this on my worst enemy. ever. Yet even sadder, is this is the most amazing and loving family. And J seems a real strong fighter. When they lessened his sedation to check brain function, he was apparently moving about a bit in bed, squeezing his dads finger and showing he was listening as they read him books aloud. What an inspiring will to live.

    Please if you can, find time to rattle beads, chicken liver dance, pray, give juju, whatever it is that is your thing. This family needs every ounce of good will/vibes they can get. I keep dreading logging on to facebook, fearful to read my foster moms status and see that this battle is lost. I keep praying to read "They have found a heart!".

    :( :( :( :(
  2. unsure

    unsure New Member

    I can't even begin to fathom such a thing, but will keep your family in my thoughts and check back hopeful of good news in the days to come. (HUGS)
  3. Shari

    Shari IsItFridayYet?

    Sending urgent prayers for all.

    And a hug.
  4. house of cards

    house of cards New Member

    Praying for little J and his family.
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Oh wow. I think what he is on is called Ecmo but not sure. Prayers are definitely going up here. Cannot imagine it.
  6. WhymeMom?

    WhymeMom? No real answers to life..

    Saying prayers for a medical miracle............
  7. Mattsmom277

    Mattsmom277 Active Member

    Thanks for the prayers everyone.

    Janet, Ecmo was what they were trying for. I will just post a copy/paste from part of one of their blog updates:

    They were not able to hook up
    his heart to the ECMO machine, his heart was simply falling apart.
    They opted instead to remove his heart and hook him up through the
    fontan on a mechanical heart. A new doctor to us, specilizing in
    mechanical hearts and transplants was called in to assist Dr.
    Rebeyka. This procedure has been done in Germany ( where the new
    doctor is from) in adults a couple of times. It is the first time
    he has done this type of thing in a child....

  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Wow. Amazing.
  9. trinityroyal

    trinityroyal Well-Known Member

    Saying many prayers.
  10. gcvmom

    gcvmom Here we go again!

    I will keep him in my prayers. difficult child 1 was on ECMO when he was born -- I imagine the technology for what this little guy is on now is not too different from that. The machine essentially keeps the blood oxygenated and in this case, an artificial pump keeps it circulating. There are huge risks for this type of life support alone -- I hope they find a donor match soon...
  11. busywend

    busywend Well-Known Member Staff Member

    How heartbreaking this whole situation is. I can not imagine praying for a heart and that meaning another family is losing a child. They must be emotionally spent.

    Sending MAJOR PRAYERS your way!
  12. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Any news?
  13. KTMom91

    KTMom91 Well-Known Member

    Saying many prayers.
  14. judi

    judi Active Member


    Sounds like the little guy was born with a hypoplastic left heart and his second surgery would have been the Fontan where they would then hook up a left ventricular assist device. If this was a the case, the little guy wouldn't have a detectable pulse or BiPolar (BP) because the ventricular assist device is essentually his heart.
  15. Hound dog

    Hound dog Nana's are Beautiful

    Saying prayers for this lil fighter, his parents, and the rest of the family.

  16. Mattsmom277

    Mattsmom277 Active Member

    Not much new news. They were concerned about a small bleed in the brain and after a CT scan have ruled it out. That is a good thing!
    Apparently he's hanging in there pretty tough. They are keeping him very sedated to prevent him pulling out tubes that must remain in place without disturbance. But they do let him be awake a bit, apparently he's listening to books on tapes a bit and tried talking although he can't because of the tube in his throat. They tried him off dialysis to see if he'd have any output but he did not. Apparently they are trying just one time to see if with a diuretic he can produce urine on his own, and if not then he will continue on dialysis.
    This little guy desperatly needs a heart. Apparently the parents are bombarded with many specialists helping prepare them for a transplant and to educate them on what happens in caring for a child without a active immune system etc following transplant. I continue to pray and I thank you for yours. I'm sure this family will appreciate knowing that strangers even are routing for their warrior J.
  17. totoro

    totoro Mom? What's a GFG?

    I am sending all of my prayers to this little trooper
    Let him make it through this