Tuesday, 17 July 2012

Home, again.

I had hoped to write an update last night and fill everyone in, but I came home from the hospital completely exhausted and didn't have the energy to do much.  It's amazing how just being in the hospital can suck you dry.

Our visit to the hospital was pretty frustrating in a lot of areas.  Somehow they had a couple of Hope's meds in the computer incorrectly.  They would bring her meds into the room to administer to her, and I would notice that they were the wrong amounts.  It's a huge deal if you don't give Hope the right amount of blood thinners!  She was almost given the wrong breast milk and other times it appeared they were going to forget to bring her feed at all.  All that to say, I had to be on my toes the entire time we were there to make sure she got her meds and feeds at the right time and the correct amounts.

We had an echo done on Monday morning, Hope's heart function was still looking good.  This is the most important thing and we were pleased to hear this.  She still has clots and will continue on the blood thinners, we'll get a better idea of what's happening with the clots in Hope's MRI.  In the afternoon we were seen by ENT (Ears, Nose and Throat), the doctor did another scope of Hope's throat.

ENT discovered that Hope's left vocal chord is completely paralyzed and that she has Laryngomalacia (a collapsing voice box).  They believe that this is the cause of her stridor.  We still don't have a conclusion as to why it was suddenly worse on the weekend.  It could have been a bad case of reflux that brought on the increased stridor.  The doctors have switched her reflux meds in order to see if this will make an impact.  They are hoping that her voice box and vocal chord will repair themselves over the next year.  If this does not happen, she'll be taken in for surgery to attempt a repair on the voice box.  It's possible that her left vocal chord will be permanently paralyzed.

We're back at home with strict orders to return if she has another stridor episode.  Please pray that her breathing will be strong and consistent and we won't have to bring her back in.  ENT will take a look at Hope again next month and will see what's happening with everything.

The most positive part of this entire experience was Hope's oral feeds, they are getting better.  We tried a new nipple at the hospital, it has a faster flow than the ones we've been using at home.  Hope did so well with them and started taking 30mls a feed from these new nipples.  This was super encouraging, please pray we'll be able to maintain this success at home and get her taking more from the bottle as we practice.

Thank you for praying us through our hospital visit!


  1. Dear Amy:
    So what would have happened if you were not there at the hospital, and didn't catch the nurses with their meds, etc?
    I am baffled beyond belief at the ignorance of the hospital and Nursing staff?
    Why does every patient young or old need an advocate to be there? To make sure that their famiy member isn't killed by some med, or wrong drug?
    Wow...Canadian hospitals are suppose to be good, free health care and all, yet, what is going on with all the "wrong" things that are happening.
    This is not the first, and am just glad you mentioned it.
    I have been there, first handed to see what happens, and yes when it comes to blood thinners, you don't just give a drug, and sit by and watch as your little one is suffering or bleeding??
    I am appauled at this.....I would think that they would have to double check, then re-check!!!
    I know in the states, nurses that adminiter drugs are on a 3 check post!
    O well....am so glad that the positive for Hope is that God is in control first and formost, and that you are her advocate, and also that through this, she is now on a different nipple to take more oral feeds! GReat news!!!
    Praying for continued success, and also for your strength to continue through this long process....with Christ, all things are possible!
    He is our strength....praising HIM today for the small things in your lives!
    Love you all!

  2. Towards above comment,
    Let us remember that hospital staff are human & even they err sometimes. Praise be instead that God was with Amy to catch these slip ups. Positive incite is far more helpful then negative comments.

  3. Though it is an onerous responsibility to be advocates for our loved ones I am grateful that we are encouraged to be part of their care and are capable of advocating for them.

  4. As a nurse, and a mother of a heart baby I am so appalled that Hope was just about given the wrong dose of blood thinner. At the same time I realize that nurses are humans and all humans make mistakes. It's frustrating for everyone. If it was incorrectly entered in the computer who's to say where in the process it occurred. The Canadian healthcare system is not perfect, however the law states that everyone be given equal access no matter what socioeconomic status they have, something that can not be said of the American healthcare system.

    God gave Hope wonderful parents who are there with her, advocating for her, every step of the way. He knew she needed you. I'm so glad you were able to find something positive in your visit. I know it has been a long, long rough road for Hope, and for you. Hang in there.
    Amy, Shawn, Sadie and Hope, I pray for you every day.

  5. Nursing is hard. Being a parent is hard!! Amy knows both of these as she is both the parent and a super good nurse!!!!! Trained specifically for Hope. Nurses make mistakes, so does everyone else. God however does not!! That's why God gave Hope the best parents possible. It sucks for hospital frustrations!! I've been there with two babes in NICU. I am also a Nurse. Mom's and Dad's usually follow their guts and usually know best. I guess the thing in this situation is the mistakes were caught before harm was done. Best place to stop them. Blaming the "free system" does not help anyone. It's not "free" anyways... But Hope is alive and well after many good people have helped her survive till now. It's a whole team of people that have worked hard for her good. Some wonderful, some bad but in the end the outcome of a beautiful baby and family. Amy has every right to vent( I would too). Her life is exhausting and challenging. This is her blog, her story, her life. I am so very honored she is sharing it. Please for her sake don't turn this into a healthcare vent!!!! There is a beautiful baby alive due to the hands God has given medical professionals and her amazing parents!!!! Let's listen, pray for and be there for Amy and her family.... But don't ruin a good thing by venting. Let's love on them, and pray for them, and praise God for Hope!!!! Positive thoughts have always brought more light into life!!!