Friday, 17 August 2012

The Glory Pass!

We heard hints all day of the potential weekend pass, it would allow us to go home for the weekend without being discharged.  At 6pm we finally got a verdict, we weren't getting a weekend pass but we were getting a day pass.  I'm writing this from my living room, Hope is asleep in her favourite bouncy chair and I'm going to sleep in my own bed!!  We have to be back at the hospital tomorrow morning at 9am.  The cardiologist will re-examine Hope and make the decision on whether she has to wait at the hospital or at home for her MRI.  Hope's MRI is going to take place this Tuesday morning and will hopefully give us some of the answers we've been looking for.

I am looking forward to sleeping in my own bed, but not looking forward to the night feeds.  Hope's schedule is really off from being in the hospital and she has meds due in the night that are usually given during the day.  She's on two new medications that I need to add to her schedule as well.  I need to be on top of these things and will have to force myself to be alert in the middle of the night.

Last night the doctors attempted to up Hope's night feeds and lower her day feeds to reduce her vomiting.  This seemed like a good idea, but was an epic fail.  I got hardly any sleep last night as Hope threw up from too much volume and had a rough night.  If I can make it through two more nights of feeding, and Hope gets to stay home after our check up tomorrow...we'll get our night nurse back!  Then I can have an incredible sleep and catch up from all this craziness.

The doctors are leaning more heavily on the conclusion that Hope is indeed showing early signs of diabolic heart failure.  Her second surgery is still an option and will help with this condition a great deal.  We're hoping this will push her surgery date up and she will be more medically stable.  Please pray for Hope, I know so many of you already do and it is truly powerful.  We know that her very life is a miracle and we are so thankful for your commitment to pray for her.  She is fighting hard and doing well, but her life is truly fragile and we want to see her thrive.

Something very exciting, is that our Hope Holly Lincoln team for the Heart Beats run on October 13th is now 40 people strong!  It will be incredible to spend the day with so many people that are raising awareness and helping support an awesome organization that supports families of children with CHD.  We also got our final approval from FSCD today and will now receive some help with our hospital parking!  It won't cover it completely, but is a huge blessing and we are thrilled to stop spending enough on parking each month that we could have been sponsoring 3 children through Compassion.

A very cool moment from today...the nurse who helped send us out on our day pass and got everything together for us, was someone that has been following Hope's journey and praying for her.  It was so awesome to hear from a total stranger that knew Hope before she even met her.  I love knowing that someone who has spoken Hope's name to God is now touching her body and caring for her health, a beautiful thing!

Whether we have to go back to sleeping at the hospital tomorrow night or not, tonight is a breath of fresh air for me and I am thankful to be home with my family.  Thank you for caring for us and continuing to follow along.

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