Coasting to Climbing

Is it not possible to have a small problem with Hope?  Everything is a major issue and never a minor bump when it comes to that little girl.  This morning I did not like the way Hope looked as soon as I saw her.  Her eyes were dark, she would not wake up to interact with me and she was not herself.  I felt like she was hot and kept asking the nurse to re-take her temperature.  Yesterday I had decided that I would still have lunch with two friends as I thought it would be good for me to stay mentally stable and take a break from the PICU.

At 11am the technician came to ultrasound Hope and she was given a sedative, it was the perfect time for me to sneak out while another friend cuddled her.  I was going to be back in 2 hours and would have Shawn with me as the doctors informed us this morning that we needed to have a meeting about Hope's next steps.  On my way out I spoke to the doctors about my concerns and how Hope's heart rate was too high and her eyes were clearly telling me she was sick.

Shawn and I walked in to a bad scene at 1pm.  The number of people standing outside Hope's room was intense.  The very sight of such a crowd outside your child's room is never good.  The doctors spoke to us outside and we never got in to see Hope.  The sedative had pushed Hope over the edge and her heart rate was over 180 bpm and her colour was worse and she was almost unresponsive.  Hope's blood pressure was dropping and they feared they were losing her.  She was given some fluid to try to perk her up and started on a few new meds.  Shawn and I were taken down the hall to meet with the doctors and were asked if we wanted extreme measures taken to save Hope's life.  We still felt that Hope was in God's hands and we wanted them to do everything they could, God would take her if that was his plan anyway.

When we got back into Hope's room, she looked terrible.  She was working really hard to breath and they had decided it might be best to intubate her and give her a rest.  I touched her body and felt again that she was quite hot.  Finally, she spiked a true fever and gave the staff a reason to start her on antibiotics.  These were started as the room was set up for life support.  They had decided that intubating Hope in her condition may push her over the edge and they needed to be ready with ECMO (life support) to keep her alive in order to transfer to Edmonton and hopefully await a new heart.  They were literally standing in the room with all the supplies to start the intubation when Hope started to perk up a bit.  After much discussion, they decided to hold off on intubating for the moment.

They are now thinking that Hope has developed a blood infection, likely caused by a PICC line infection and that the antibiotics running through the line took effect quickly.  Hope is still on heart assistance meds and now heavily relies on them.  She is still in a bad place and could easily go the wrong direction.  Her bed is set up to allow ECMO to be started quickly if needed and she is under very close watch.

The other news of today was from GI.  After carefully reviewing everything they have on Hope, they do not feel that Hope's liver will disqualify her from transplant.  The transplant board will now discuss whether or not Hope is eligible and will decide whether or not a liver biopsy needs to be done to verify.  The liver biopsy can be done here in Calgary.  We should learn more in the next day or two.  In the afternoon they told us that Hope could be listed as early as tomorrow if everything goes through.

I feel very little emotion at the moment.  On Monday I was taking Hope out in the car with me, today we had to tell the doctors that we wanted to save her life at all costs.  Things change quickly and it takes my heart time to catch up with this present reality.  Normal parts of life carry on no matter what happens in the hospital and I find that very confusing.  Tonight we kept an appointment we had at a furniture store to finalize our fabric choice for a new couch.  It seems so silly to think about, but at times the normal things are what keep me going.  I'm fairly sure I haven't even begun to process Hope needing a heart transplant or the fact that her body has begun to shut down so quickly.  We have no idea how long a transplant could take.  Hope is too big to take a heart from a small baby, but too small to take a heart from a child.  She has a small population that would match her size and death is more rare at that age.  I still hate the very idea that another family's pain could be my joy.

I'm tired, yet struggle to sleep.  I'm able to smile, yet numb inside.  I feel hungry, but often feel ill after eating.  I want to be alone, yet crave the company of others.  I am lost in a confusing world of pain, fear and sadness.  Please do not cease praying for our family.  The journey we thought was going to coast for a time, has now begun to climb up hill once again.