Change in Plans

Quickly stopping in here again to say hello from the Ronald McDonald House 😊

 I had to leave Veya’s room for the time being as the team is about to perform a procedure for one of her roommates….so while I wait to be let back in I thought why not go have some lunch, soak up some of this beautiful sunshine, and pass along another update to everyone!

(Please bear with me as I try my best to explain what the next little while is going to look like for Veya and our family.)

For those of you who have experienced living the hospital life, you know all to well that plans and schedules seem to change faster than you can blink. 

This morning I learned that Veya’s team has decided to forgo their plans for conducting a standard MRI and are currently working out new plans to send her for a more specialized MRI test called a MRCP.  Through this test they will be able to look at the bilary and pancreatic system in much more detail for the pockets of fluid (cysts) and blockages in the ducts that Veya might have. 

This test is run over a duration of time.  They will go in and inject dyes and have to let things sit for a number of hours…go back in and study…repeat if necessary etc. etc.

 As of right now we do not know when Veya will have this test performed because of a number of factors the team has to consider. Ideally the team would like to run this test when it’s safe for Veya…and if it shows that they need to intervene surgically…they would like to be able to do so right away.  They prefer not to run the test today and then have to wait some time before intervening. 

 As mentioned in yesterday’s blog, one of the ways to treat any possible blockages would be to put the tube with the camera on the end down her throat and clear things out.  However this is high risk for Veya at this point due to her lung damage and her increase needs for O2 support.  They would like to give her lungs more time to heal before putting anything down her throat that could cause her to aspirate. 

 The SickKids team reached out to McMaster to touch base and see if it might still be possible to transfer Veya and have them run the MRCP test and then intervene surgically if necessary….to which we learned….is not possible for McMaster.

Veya is also being followed now by a Hematologist Specialist (they specialize in diagnosing, treating and managing any possible diseases that affect your blood, bone marrow, and lymphatic system)  And because the concern here is for possible bile duct blockages, and draining issues in this area – this is why they were called in to assist. McMaster does not have a Hematologist Specialist, this means Veya will have to remain at SickKids for the next month or two as they work this puzzle out for her.  While this felt a little discouraging to hear, we are just so thankful this decision could be made prior to moving Veya and then needing to wait again for a bed spot and move back to SickKids.

As much as we long to be closer to home and together more, it’s really nice to know Veya can remain here and have the care that she really needs. 

Also, I just want to thank you for the really sweet and supportive messages you’ve sent us since reading our last update.  I haven’t been able to respond to many of them because I am quite busy when I’m at Veya’s bedside…helping with her physio and then meeting with all the different specialists….but I love receiving the messages and reading them! 

Before I sign off here, I'd like to leave you all with a poem that was just shared with me this morning, as it's so beautifully true and can be fitting for all of us.

It's titled: Life's Pathway by Emily Matthews

At times, life's path seems filled with things that make the going rough, and we wish there were a smoother road, for we feel we've had enough....But if we pause a moment and remember Who's in charge, the hills that loom ahead of us no longer seem so large, and every rock before us, when we know we're not alone, becomes not just a stumbling block, but one more stepping stone. 

I would love to echo what this kind mother said to me after sharing this...and that is - what an amazing comfort knowing that God Alone Reigns and He is guiding every step of this journey with His child. 

And it's not just for Veya, it goes for all of us! God's guiding all of us :) 

Have a great day everyone!