I started the day fairly optimistic and decently patient. Hope was taken for an ultrasound on her abdomen and spent most of the entire day screaming or sleeping. She was incredibly thirsty and wanted a wet sponge to quench her thirst. Sadly she was not allowed to have any water as we waited for her Varices procedure to take place. Hope was beyond tired after not sleeping last night. The nurse said she cried through 80% of the night and was miserable. Broke my heart to hear this.
By 3pm my patience had long disappeared and Hope's tears were daggers to my heart. I wanted to give her water so badly and needed to see something happen. I started harassing doctors and nurses to find someone that could get things moving. They continued to assure us that Hope would go into the OR at some point. Sadly, at 5pm they finally let us know that Hope's surgery was officially bumped. We began giving her water immediately and started her feeds again. I hate wasting an entire day at the hospital. If we'd gone back to Calgary she would have had her surgery today.
Just before 5pm the cardiologist came to speak with us. Hope will have her heart surgery, although we don't have a date yet. They are now trying to balance when to do the Varices procedure and when to do the open heart surgery. If Hope needs to have the Varices procedure first, they will need to wait 10 days to do the open heart surgery in order to lower the risks of bleeding. If they do the heart surgery first, there is a chance Hope will have a bleed from the Varices as a result of the delay. We are stuck.
We have asked if tomorrow they would use a less invasive scope to take a look at Hope's esophagus. If the Varices are not as bad as they think, we will delay that surgery. If they are terrible, we'll know it's best to delay the heart surgery. Neither option is ideal and it's never easy to make these decisions. Please pray for wisdom.
We hope to get a bit more information tomorrow, at this point we have no clue what's going on. We are not thrilled with the idea of a long stay in Edmonton. Please pray that the Varices are not bad and that the procedure can be delayed. That way the heart surgery can go ahead and we'll have the other procedure done in Calgary. Please also pray that we'd find the trick to keeping Hope more comfortable.
Praying. Never stop, to be honest!
ReplyDeleteStarted following your blog last week. I connect so deeply as a mother - and think of you often.
ReplyDeleteI am in Edmonton and if you need anything here please ask. I am more than happy to help and support, as is my family.
movingways@live.ca
I just found your blog through my friend Jenni Leriger. I will pray for you and little Hope. May He give you & the doctors wisdom this week and may He give comfort and rest to your dear baby girlie. I live near Edmonton if you need any help in any way.
ReplyDeleteAmy, thinking of u and praying for your precious little girl. I'm here in Edmonton and would live to just give you a few hours of rest. I texted u earlier this week ( I'm heathers friend). Call me if u need anything
ReplyDelete780-710-2949
Bless you! Bless your patience and persistence! Bless all your efforts! May God make a way to clear the schedule and make Hope the #1 patient in Alberta. May God renew your strength and meet all your needs. May you rest in His presence and find comfort and peace through the rocking waves and high winds.
ReplyDelete"Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you." - Deut. 31:6
Praying for you, your husband, Hope and Sadie continually!
Praying with and for you, hoping for Hope, praying for God's peace and healing.
ReplyDeleteMe too. Praying. He has purpose in all of this.
ReplyDeleteYour family is in our prayers. Our second child has hyo plastic left heart syndrome. It is so scary as a parent and there seems to be so little you can control. Our son Joshua is going to be 17 but it seems like yesterday we spent so much time at the hospital. Stay strong and keep the faith!
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