A New Discovery

Remember when I shared very early on that often on this journey, we take two steps forward and one step back?  Well, that’s exactly how this past week went.

Veya was very irritable last weekend and just not herself. When I returned to Sick Kids on Monday the team made mention of it as they couldn’t sort it out and Jer had troubles consoling her Sunday when he was with her.  So, I put on my imaginary nursing scrubs and thinking cap and began investigating what was going on with Veya.  I scooped her right out of bed, surely, she just wanted snuggles with mom…. but that was a solid no.  It was more like a painful cry followed by a stern look of “put me right back down mom” from Veya.  The cry felt oddly familiar, she had the same cry when she fractured her right arm. So, I placed her back down and did the limb check.  Her arms were good, and she was happy to wave those around, however when I got to her legs, specifically her right leg I noticed it more swollen and when I touched it the painful cry came back.  The team ordered x rays on that leg and sure enough we found a significant break in her femur bone (which is supposed to be one of the strongest bones in our bodies if not the strongest) Immediately ortho was called upstairs and they casted her leg to mobilize it.  When I came back to bedside the following Tuesday morning, I still didn’t feel convinced that Veya was comfortable.  Normally she does her famous leg lifts and waves them around. Aside from her not being able to move her casted leg, I noticed she didn’t want to move her left leg either.  Back to the x ray department, and sure enough she has a fracture in the left leg.  Our sweet Veya is currently sitting in two leg casts and will remain in them for the next six weeks as we wait for them to heal. 

I think most of you are probably asking out loud to your screens “How in the world did this happen?”  It’s our question too, but the truth is we probably won’t ever figure out how it happened.  What we do know is from her imaging and even from previous imaging done when she fractured her arm…is that Veya has very weak and fragile bones.  The Endocrinology Team is involved and right now they are trying to figure out if this is a primary bone issue we are looking at or a secondary bone issue.  Meaning is there an underlying problem with her bones, does she have a bone disease….OR….is it secondary because of being stuck in a bed all these months, very limited in her movement, was medically paralyzed for nearly two months, has been on a ton of medication that can weaken the bones, and has had her feeds stopped often in CCU which means she wasn’t getting adequate nutrients, Vit. D and Calcium things like that.  At the moment, Endocrinology feels that we are looking at this being a secondary issue, however they are doing some tests and have ordered an x ray of Veya’s spine that will help them reach their conclusions on it. They are reviewing her vitamin D and calcium dosages to see is we can go up on those to support her bone health…but like I said to Veya’s General Peds. Team this morning…I’m pretty sure we have maxed those out.  If you all could see how much Vitamin D Veya gets a day, it’s nearly a whole bottle that they syringe into her feeding tube. I don’t know maybe Endocrinology will want to add a “second bottle of vitamin D” so to speak but then I’m going to be expecting the sun to start shining out of Veya’s bum.  There is a monthly infusion medication they could also give to help however, their concern for Veya is that this medication can have a negative impact on her kidney function and they don’t want to damage those again, so that remains off the table for now. 

The other unfortunate part here is pain management for Veya.  She is not able to be given Tylenol because of two reasons.  One, it’s very harsh on the liver so the GI Team does not want her to have it.  Two, it depletes her glutathione levels which are already low in children with Down Syndrome.  Veya is also unable to receive Motrin/Advil because of her kidney function and the fact that it’s hard for her kidneys to handle it and filter it.  The only option from her team is morphine which they are unsure about using because she just finished weaning from being on an incredibly high amount of it.  They feel as though giving her one dose of it won’t have much affect on her. I am thankful to share though that, restricting her mobility in both legs seems to be enough for her and when I left her bedside this afternoon, she was a happy little gal once again. 

 Of course, this feels like another setback, it’s really too bad because now the poor girl is back on some strict bedrest with OT and PT being very minimal for the next number of weeks.  We just want to help her get stronger.  However I will say this, God is still so good. Talking with some of the families at the hospital and over at the house, so many of them said; your poor daughter, born with a genetic condition, went into heart failure so early on, went into acute kidney failure, fought through pneumonia, severe pulmonary hypertension and pulmonary hemorrhaging, had two high risk cath lab procedures, one open heart surgery, liver issues, multiple clots, fractures, the list is endless and you are still able to call God good?

Absolutely!

Because the human emotions experienced through sadness, pain and grief should be separate from our understanding of God’s goodness.  So many of us combine the two.

For it was because of God’s presence I have felt peace holding the hand of our daughter wondering if she would make it through the night.

It was because of God’s providence I have seen perfectly timed circumstances that could not be explained by mere coincidences.

It was because of God’s promise that I can look at Veya’s diagnosis (multiple diagnosis) her delays, her setbacks, which many find heartbreaking and I see nothing but a reflection of God’s faithfulness. 

Tying this all back into this being Veya’s testimony that both Jeremy and I do not want to take from her.  Veya’s story has raised awareness of congenital heart disease. It’s shown everyone God’s power through miracles.  Her story is helping others going through similar experiences that there is always hope.

I will never stop sharing of God’s goodness. He is good all the time.  Even in this most recent diagnosis of multiple fractures. 

And He is going to continue to see us through it.

Looking ahead to next week, it was just shared with me today by the team that Veya will be undergoing surgery Wednesday morning for the placement of her G-Tube. While I will be around home a little bit more these next two weeks helping the big girls adjust to new school routines, I will be circling back up to Sick Kids Tuesday evening to be with Veya for this surgery.  There is a chance that she may not need to be admitted into PICU for recovery if all goes well.  We would really love your prayers over this upcoming procedure, over the hands of the doctors and that the change in tube feeding may be beneficial to Veya.