Saturday, May 4, 2013

May the 4th be with you. Happy 1 month, Jake!

My last post about the highs and lows of this journey was all too accurate because the day after that post Jacob had another low.  Jacob's white blood cell count rose and overnight he had be put back on the Sipap oxygen because he was having difficulty breathing on his own.  We had 36 hours of Jacob on Sipap, and the doctors made the decision to activate his Pacemaker at 120 bpm.  After a day with his pacemaker turned on, Jacob was once again off of Sipap and the lab cultures showed no signs of infection.  Now Jacob's team of doctors is divided - should the Pacemaker be left at 120 or set to backup at 70? As Jacob's Mom, all I know is that when his pacer was activated it helped him recover from his low point, and he has been very stable ever since.  The pacemaker doctors keep telling us that there are major risks associated with having a pacemaker from birth.  I have no idea what the right decision is - but God does.  Please pray that the doctors make the right decision for Jake and his future - most likely the decision will be made by Monday.

As of right now, Jacob has only one iv remaining in his left leg, and they have just turned off another medication.  This iv is for blood samples, and for administering morphine.  Jacob is on a slow wean for morphine, because he was showing withdrawal symptoms when they tried to wean him at the normal rate.  It's been really hard for me to accept that my less than one month old baby was showing some of the same symptoms that drug addicts show when they are cut off from their drug.  In Jacob's case it was mostly gagging, sweating and coughing...with the slower wean process he is still gagging occasionally but it is very minor.

Apparently we are headed to Step Down on 4D on Monday.  If that happens then Jacob will have spent 33 days in the Cardiac Critical Care Unit.  I'm hearing mixed reviews about 4D from the other Moms around me, but it is still one step closer to taking my baby home.  Every day now I get to give Jacob a bath, dress him and do all of his diaper changes.  Either Jon or myself are holding him for most of the day, as long as no procedure needs to be done on him or any of the other children in the room.  It's so nice to finally be doing normal baby things with him.  But at the same time they are not really normal baby things because of all the lines coming out of his iv, his feeding tube, and his many monitoring stickers that are stuck all over his little body - changing his diaper can be quite daunting with all those wires coming from his upper leg.  But I'm doing it - sometimes I can't believe it :)

Yesterday they switched Jacob from his Enox blood thinner injections to oral doses of aspirin - so it looks like we may be able to take Jacob home on aspirin instead of twice daily leg injections.  One less painful thing in his life is something to be very thankful for.

Thank you to everyone who has been praying - I can feel  your support and I know that God has been protecting my baby boy throughout this journey.  It's incredibly frustrating when the doctors have no answers.  Jacob's condition has been described to us as "unique", "a puzzle", "extremely rare", and so on.  The fact that there is very little medical guideline for treating a baby with a single ventricle heart defect and complete heart block is terrifying.  Even rarer is the fact that Jacob's heart block developed in utero, and was not a complication of open heart surgery.

I also want to say thank you to those who have written messages, sent gifts and visited with us at the hospital.  Last week we even had a visitor from Twillingate :)

Heading back to Sick Kids now - here's a quote shared with me recently by my very wise and beautiful Mom:

"I believe that tomorrow is another day, and I believe in miracles."
                                                                                                 - Audrey Hepburn.

This quote is now written on the chalkboard beside the door to our room here at Ronald McDonald House.  

1 comment:

  1. Hi I'm still following Jacob's story and just want to say you've all been in my prayers. So thankful that God has brought Jacob this far, and so happy to hear you're likely moving to StepDown soon. 4D is a nicer place to be than CCCU...much lighter and brighter and you never have to leave Jacob's side :) All the best!
    Melissa Kottelenberg