Monday, 4 February 2013

I Hate Clots, I Really Do.

This morning Hope was back to her old habits.  She was completely happy until she noticed that I had entered the room.  Suddenly life was horrible and she pretended to be miserable until I picked her up.  Then life returned to normal and she settled right down.  I was having an amazing snuggle with her when a technician came in to do an ECG and I had to put Hope back in her bed.

Last night Hope's potassium spiked to a dangerous level.  It was 3 times higher than it should have been and could be deadly.  Thankfully the staff jumped on it right away and were working at getting it down.  Hope's heart rate was incredibly low, but started to climb up a bit as the day wore on.  We can't seem to find the right place for all of Hope's electrolytes.  They have been too low or too high for over a week now. We are hoping that, with the diarrhea improving, Hope's body will get back into a normal routine.

Over the weekend I noticed that Hope's right hand was much pinker than the left.  This was a change and with the PICC line in that arm, it concerned me.  I pointed it out to a few doctors and they decided to do an ultrasound this afternoon to make sure everything was okay.  Unfortunately, it was not okay.  Hope has a clot in her right arm.  Thankfully, it is still quite low and has not reached her shoulder.  With the line still in, there is a high risk that the clot will grow and could run into the neck.  This is the exact area I have mentioned before.  If this area clots, there is nothing more they can do, it will surely take Hope's life.  Normally the line would be pulled to avoid this happening, but we don't have that option as it's also the line keeping her alive.  This is the site that her TPN is running through and, until we begin feeding her again, this is vital to her survival as well.  Once again, we are stuck between a rock and a hard place.  Please join us in praying that this clot will not move a millimetre!

Now for some good news...  Hope's left lung has slowed down a lot in its drainage! They are considering pulling the chest tube tomorrow as they feel the fluid may be at a low enough volume.  If this is true, we would stay on TPN for the rest of the week at least, but should be able to start feeding Hope at some point next week.

If Boston and Toronto come back with an answer this week, and say not to operate, we may be Calgary bound!  With the chest tube out and the Chylothorax under control, we should be able to return to the Calgary Children's Hospital.  We will continue to await their decision and hope that we will be heading South soon.

Thank you to everyone that continues to pray for our family and especially Hope.  She is full of complications, constantly doing things they have never seen before and is often thought not to survive.  Yet I believe in a God that is able to do miraculous things.  I believe that He is capable of saving her and am humbled by those that have chosen to believe and pray alongside us.


  1. You have the strength of 10 women and Hope has your inner strength. I pray for her daily as I read your posts. my friend Beth shared your blog a while ago and I have been following Hope's life journey since, October or November...I have had a great loss I am grieving (my Husband was killed in car crash) I wanted you to know that You and Hope give me great strength and faith that Life will be "normal" for us each one day sooner than later. I send you a Big Hug, and know you are not alone. sending love and prayers from Ontario <3

  2. We will pray - hard! - that the Lord will not only stop the clots growth - but bust that sucker up!
    Great observation skills, btw: I'm sure they're thankful they have your skilled eyes on that sweet baby!.

  3. Just wanted to let you know you've got a heart mom in SC who is praying for Hope as well as you, Shawn and Sadie as you travel this difficult road with your sweet heart warrior! I will pray specifically for the clot and continued slowing of the drainage. I'm so very sorry for the constant drama Miss Hope brings your way but I am amazed at the level of strength God continues to give you and your family. I wish there was something I could do for you to make your journey even the slightest bit easier! Please don't hesitate to contact me if you can think of anything I can do to help (besides lots of prayers of course!).

    ((Heart Hugs!))

    info (at) mom2lo (dot) com

  4. I can imagine that some days you don't feel strong or feel like being strong but so many people see this attribute in you. Your story and your sweet little girl have strengthened my prayer life and my relationship with God and your continued faith and determination for Hope to survive has also made me a better mom. You inspire so many people, Amy and it is a blessing to me to be able to follow your story and to pray for your family and to help you in anyway I can (hoping for some more cuddles with Hope soon). Praise to the God of miracles and may His glory be displayed in more miracles for your baby. I believe they are coming and I believe that one day your daily struggles will consist of more normal parenting issues like tantrums in the grocery store or Sadie and Hope fighting over the same toy and those screams and cries will fill your ears instead. My prayers and my heart are with you tonight. May His peace be with you

  5. I am praying for that (and all) clots to dissolve completely... and for answers soon from TO and Boston. Praying for rest and restoration for you, for healing for Hope - that her body would find balance for those levels and move closer to getting to Calgary! Praying for miracles. And for peace as you await them. Hope you sleep well, warrior mama. Know that we are with you... praying and believing in the God who performs miracles!

  6. Karen Richardson4 February 2013 at 22:46

    BTW, as I was making soup this afternoon my own miracle baby (now age 7) insisted we stop and pray for Hope. Totally his idea. He almost always whispers his prayers -- he is inspiring in his reverence. This time he was almost yelling; I have never seen him pray so passionately. This was not a pleading prayer! :D This was the prayer of pure faith of a child. It went something like this, although many sentences were repeated over and over: "Dear Heavenly Father, you are powerful! I am asking you to heal this baby, Lord. Heal her, Lord! Give her strength from your Holy Spirit. Heal her and give her strength. Thank you, Jesus. Amen!"

    Amen. :)