Wednesday, 14 November 2012

Potential Plane Ride

Last night was a terrible, no good, very bad night.  Hope was still wide awake and miserable at 2:30am.  I finally convinced the staff to call in the doctor and get Hope some morphine immediately.  She was miserable and it appeared to me that we were torturing her.  After the morphine, 2 sedatives, Advil and Tylenol, Hope was able to sleep for 3 short hours.  We spent the rest of the night attempting to settle her and failing miserably.  It was more terrible than I had imagined it could be.

I was completely exhausted and out of energy.  Shawn had to take the afternoon off to stay with Hope so my mom could stay with Sadie and I could have a nap.  I had a good 2 hour nap and started to feel a bit better.  I'm terrified to sleep here again after last night.  Hope has a new roommate and I feel sorry for him and his family.  They have added morphine to Hope's meds again and we plan to give it to her all night long, she needs her sleep so badly.

They had looked at transferring Hope today, but weren't able to find a bed in Calgary.  They will reattempt her transfer tomorrow morning if there is a bed for her.  I spent some time this evening packing up our apartment.  We still have a lot to do, but have been able to get a bit more organized overall.  

They suggested stopping Hope's feeds today in case that is causing her to be upset.  I don't see any signs of her stomach being in pain and don't believe that's the issue.  I urged them not to stop her feeds as we're now 1/3 of the way to a full feed.  Her belly was only 40 cm this morning and we praise God for that blessing. 


  1. There are no words! I am sure that you are totally exhausted, yet poor Hope! Medications make some of us very aggitated, and it is hard, I know esp. with morphine to settle. It does work on allowing pt. to relax with breathing but can make her constipated, aggitated, and very irritable?? Maybe if she could just tell you, she would say...please take me off of all of this stuff, and I will sleep!
    Poor little thing! I feel for will pray for her!
    Wow...if only babies could talk, and let us know what is wrong. I am certain that you Amy know her better than anyone...she prob. does not have a feeding prob. if that is what your gut is telling what your instincts tell you to do......!
    Sorry that you are so tired, but glad you at least got 2 hr nap? Wow...just can't imagine what you guys are going through.....may God be your Strength today!!! May HE give Hope rest, and relaxation to sleep!

  2. Hi Amy, I don't mean to step in on a medical end of things, but have they been checking her for withdrawal signs, since her stay has been so prolonged? My son Liam(3yrs old - HLHS) was at SickKids for a long time after his Glenn and actually got addicted to Morphine and Ativan. He would get so incredibly agitated, shaky, sweaty and unable to be settled or sleep or want to eat. After getting his scheduled Morphine and Ativan, I would watch all the symptoms melt away as he became sedated, until a few hours later when the drugs started wearing off. It was quite frightening and just awful to watch every few hours, especially as he was so little (4 1/2 mos at the time). They originally thought digestive issues too and stopped his feeds, but then one nurse tested him for withdrawal symptoms (where they note signs of withdrawal every few hours - if the patient shows more than a certain number of combined symptoms, then that patient is considered addicted to the meds and in withdrawal). As soon as it became clear that was his struggle, they began weaning him off these two sedatives and gave him a new med (I think it was Ranitidine) to help with withdrawal symptoms. It was a long process, and it was so tough, but it was amazing to see the struggle over drugs decrease little by little every day. Not saying this is the issue, but I am seeing a lot of similarities in your writing. Maybe just an angle to pursue?
    I will hold Hope and your family close to my heart today and am praying for you often - specifically for discernment and clarity concerning what the problem might be that is causing all of this. You have been an incredible blessing to me as I have followed and journeyed with you. My mommy heart aches most days when I read the road you are called to walk along, but I earnestly pray that you would continue putting your hope in God, that He may be glorified and use Hope to do mighty things in this world through her incredible testimony!
    Rich blessings,
    Lindsey J Bleach