"My Love is not Fragile"

"And the LORD will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail."  Isaiah 58:11

We did it!  We are back at Sick Kids!

But what a ride it was to get here….

I went to visit with Veya last week Wednesday morning and to my surprise was told “she is moving today, this afternoon!”  So, I had to quickly clean up her room, take the artwork off her walls, empty the cupboards and bring that all back home, pack up a quick bag for myself and then circle back to Mac ready to join Veya for the ride.  Once I got back, I was told her transfer had got bumped to 8pm.  Perfect.  I went home again to enjoy a meal with the kids and say goodbyes to them and headed back to Mac.  Only to be told that her transfer got a further delay and wouldn’t happen now until midnight.  No problem, we know these things can happen and emergencies arise. I like to think that we are “well-seasoned” when it comes to these sorts of things, they don’t really surprise us anymore.

Finally, by 2am we were on our way, until we weren’t.  About 20mins away from Sick Kids we got stuck in a full lane closure on the Gardiner Expressway. (The ambulance transporting Veya was able to keep going, but I ended up driving myself and got stuck for about an hour in the closure) the fatigue was starting to set in at this point.  It was around 4am that I finally reached the Ronald McDonald House, checked in and then walked over to Sick Kids to find Veya.  I have to say it’s been a long time since I have pulled an all nighter…and we just ain't  bouncing back like we used to be able to (haha)

We are finally settled in and it’s been an eventful stay so far (in both good and not so great ways)

I’m going to backtrack a little bit here, there was a bit of a rush put on Veya’s transfer because a few days prior to leaving Mac, Veya developed a very large hard lump on her right arm (the same arm that had the fracture) The team at Mac assessed it, and weren’t quite sure if it was just a hematoma (which is a pool of mostly clotted blood that formed by her muscle) or if they were dealing with an abscess needing to be drained.  They felt strongly that it needed to be drained which they were unable to do at Mac because of its location. She would require a full anesthetic not just a local anesthetic to drain it.  Sick Kids team has since done further assessment and confirmed it’s a hematoma and therefore no draining is required.  They have had to put her blood thinner medication on hold for the meantime to allow the hematoma to resolve. 

Veya was also immediately assessed by the liver specialists and GI team here.  They took the first two days to thoroughly read through her charts, ask their questions and familiarize themselves with the current state of her liver.  It was decided on Friday that they wanted to first repeat the special MRI test called MRCP that was done on her the last time she was at Sick Kids.  They lined this up for the following Monday, so I was able to head back home Friday to swap out with Jeremy and enjoy the weekend with the other kiddos.

However, I didn’t quite make it back home that Friday like I wanted to, as I ended up being struck by a delivery truck … just a few feet outside of leaving the Ronald McDonald house.  I am very thankful for God’s protection and that I didn’t get hurt in any way, but I broke down and cried an ugly cry because I felt really burnout from the last 48 hours at this point.  I know I have said this before, but I’m going to say it again, God provides for you in the most amazing ways!  I had a kind homeless man come and help me right after the incident.  He stayed with me for the two hours it took to sort things out, he changed out a tire for me, provided his witness report and even took a walk with me and shared his story and the goals he has for himself in getting back on his feet. He told me that he wasn’t a very religious man, but that he does believe there is a God and that he would pray for Veya and ask that she could come home with us one day soon.  I really hope and pray that God will work a miracle out in his life as he has done many times in Veya's... and help him get back on his two feet.

I decided to stay Friday night and just rest from that day and would make my way back home on the train on Saturday. 

I enjoyed a short weekend at home, and we got back to business on Monday.

The MRCP test was done, and it showed the team that Veya still has two gallstones left, and that the cysts on her liver have grown larger.  They apologized because they are still not sure what is going on with her liver.  At this point in time, they have decided to re do the 6 week rigorous antibiotic course for Veya via PICC line (we chose to do it orally the first time with her feeding tube, in order to avoid another line infection for her and another possible blood clot)  The team strongly believes that these cysts may be infected with her on and off fevers and her white blood cell count being elevated.  Veya will get her PICC line on Friday and the teams are reaching out to further specialists from the surrounding hospitals here to weigh in on the recent MRCP imaging. 

There are discussions taking place to see whether or not Veya is a good candidate for an endoscopy procedure to go in with a camera and try to remove the two gallstones.  They ideally would like to try this first to see if that will make any difference to her liver function, perhaps they are in the way and blocking the bile flow.  They would also like to go in and drain one of the larger cysts, remove some tissue and run tests on those.  At this point in time, I’m not sure when we will hear on their next steps, or when further procedures will take place, but we will continue to wait patiently…and continue to trust that God is working all things out. 

You know, the other day, I was re watching the movie Frozen with my two big girls (probably for the 100^th time), and there is a line in there from the character Kristoff where he says, “My love is not fragile” and it’s had me thinking the last little while.  Being positive all the time isn’t realistic, especially when you are having to watch your child struggle with their health.  A year ago, we naively thought that medical complications to the extent that Veya has been experiencing could never affect our children. Man, were we wrong!

I often like to sit and wonder what God might be trying to say to me right now.  I have conversations with Him, as if He were sitting right next to me.  A lot of the things that are said these days are out of pure exhaustion, fear, and a need for his ongoing help.  But even after I express my concerns, cry the heavy cries, the thought that always comes back is. “My love is not fragile.”

I just picture a loving God wrapping His arms around me, letting me know that there is nothing that I could say that would change the love that He has for me, for my family, for Veya.

I guess what I am trying to say here is, no matter where you are in life, there is always someone greater, whose love never changes!  You can’t say anything that will make God abandon you.  He will meet you where you are, He doesn’t have to “fix it”, give advice, or change your attitude, He will simply sit, feel, and be with you. I hope you can be encouraged in this way too.