Day 530 - Update

  "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."

                           Romans 8:18

Someone asked me the other day “How in the world can you praise the God that gave your daughter so many health issues?”

My answer is in John 9:1-3

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

God did not give Veya all of these serious health complexities.  He allowed the global effects of sin to enter our family this way.  Why was the man born blind?  Was it his sin, or his parents sin?  It was neither.  It was to display the supremacy of God in suffering. 

For some reason God saw us fit to walk this dark road,  but out of this dark gut wrenching experience comes the unshakeable conviction that God is love.  We want our lives to reflect an unshakeable joy in the Lord that allows us to embrace a life of suffering for His purpose and glory.  We want to shout that a life filled with so many health concerns and with Jesus is infinitely better than a healthy body without him. 

The explanation of the blindness in that story, and the multiple health complexities in our 17 month old daughter, lies not in the past causes but the future purposes.  We are learning that this kind of suffering can only have ultimate meaning in relation to God.  For our suffering to have ultimate meaning, God must be supremely valuable to us.  More valuable than health and life.  Many things in the Bible make no sense until God becomes your supreme value.

In the case of the blind man – it happens to be healing – the glory of God’s power to heal.  But there is nothing that says it has to be healing.  He also says “My grace is sufficient for you, my power is made perfect in weakness.” (2 Corinthians 12:9) Sometimes He puts his power on display, not by immediate healing, but by sustaining us.  

It has been an intense few weeks to say the least.  It has been filled with so much sorrow and sadness, agony and fears.  From Veya recovering from further leg fractures, to a screening for leukemia, to a respiratory virus (Paraflu) that needed another PICU admission, to advocating and fighting for Veya’s rights to receive life saving measures, followed by a metabolic acidosis diagnosis, then septic shock coupled with a pulmonary hypertension flareup. Veya is such a fighter and we are so proud of her and SO incredibly thankful to God for sustaining her life yet again! 

We are still processing everything that transpired over the last three weeks. We feel shaken to our core and a lot of trust has been broken between our family and some of the teams at Sick Kids. 

To catch everyone up a bit here….

 On April 26^th Veya was admitted to PICU for her third time this year due to another viral infection (paraflu)  On the third day of her stay the ICU staff physician that was on informed me that should Veya require further respiratory support like needing to be  intubated, he was not going to provide her with a breathing tube.  He was fully denying her intubation and would let her pass away. I was shocked.  First of all, Veya was doing well on her BIPAP support and I didn’t think she would need a breathing tube anyways during this admission, BUT I could see her needing one IF she contracted something else during her PICU stay and things compounded for her.  So as her mom I wanted to know that the team would properly support her through that if it came to that.  Which I was learning in that moment they would not because…and I quote…. “he felt like if Veya were to be intubated she would not successfully be extubated”.  All of a sudden, the hospital that I felt Veya was very safe at, didn’t feel safe at all. Let me also just share that as this discussion was happening – Veya was happily bouncing away in her chair and waving to everyone.  She was not in what they call “End of Life” stage.

 I challenged that doctor on his decision and reminded him that Veya is Full Code on her records.  Meaning our wishes as her parents are for them to fully support her and resuscitate her if the need arose. I also reminded him that Veya has never failed an extubation and I am not okay with this decision being made on a preconceived idea he has on her.  He stood firm in his decision and was even willing to offer his decision in writing to me.  I escalated this to the Patient Relations Team at Sick Kids to assist our family in advocating for Veya.  As we were waiting for Patient Relations to speak with PICU…all of a sudden Veya was being poorly managed by their team.

The team made a few decisions that put Veya in a very compromising situation, which caused her sodium levels to go very high (over 180 for those in the medical fields for two days straight) which then sent her into metabolic acidosis (a serious electrolyte disorder that occurs when the body has too much acid in the fluids) This caused serious injuries to all of her organs.  Her kidneys, her liver, her lungs and even her heart.  This then sent her into septic shock which is why she needed to be intubated. 

I will never forget watching that moment of her being intubated. Jeremy and I left her room to go eat dinner, but something felt off so I ran back upstairs to check on her.  When I arrived at her room Veya’s oxygen on the monitor was falling…she was sitting in the 50s and there was no one around!  The alarm goes off on their monitors and phones, yet no one came running.  I went running out of her room to grab people in because I couldn’t give her a boost of oxygen on her BIPAP since she was already sitting at 100% FIO2 on it.  I yelled for them to intubate her in that moment.  Sadly, we have so much ICU experience behind us that we know in situations like this the teams come running and there is urgency in stabilizing a patient.  There was none of that and when the team did come together and assemble to intubate, the room was cold and eerie.  I still can’t shake that feeling.  I stood at her bedside with Jer , holding Veya’s hand and looked the ICU doctor in his eyes begging for him to intubate her swiftly and carefully.  Asking him if I could trust him to do it properly, questioning them all why there was no urgency.   By God’s grace, Veya was intubated safely and was finally able to rest.

The following hours and days remained a battle.  Typically speaking when you have sodium levels as high as Veya did, you are to be put on an EEG to monitor for any possible seizures.  When I asked her ICU doctor if we could do that he said no and that he had low concern for seizures, but that she would require brain imaging after her levels come down and she’s in a safer spot.  Again I challenged him and we were able to get her monitored, thankfully no seizures were detected.  Veya also needed a blood transfusion to help bump up her hemoglobin levels as they were low due to all the blood work they needed to do and to also help her body to properly oxygenate.  We had to fight for that.  Veya has received three blood transfusions since May 3^rd. 

Veya remains in PICU here at Sick Kids.  We wanted to arrange for a transfer back to McMaster but at this point in time it’s not safe for her because this entire mismanagement in her care has caused her pulmonary hypertension to return.  If Veya needs to go for a procedure that requires an anesthesiologist, she can’t have that done at McMaster because they don’t have any specially trained cardiac anesthesiologists.  So that is on pause for now.

We are still in this fight, we are still actively talking to Patient Relations who have been a really great team to work with and their advocacy has been helping!  God worked through them to move this mountain and allow for further respiratory support through intubation.  What we are truly dealing with here is ableism.  From day one, Veya was born with an “x” on her back so to speak.  Already while I was pregnant, there were individuals who wanted to end her life because they did not see any value, purpose or worth in Veya.  We were met with that again when it came time to discuss transplant for her.  They aren’t concerned about her making it through surgery….they keep talking about her quality of life. They don’t see her having any sort of quality of life because she is not neurotypical.  Looking at the discussions and meetings I have had over the last few weeks, I have been told things like

“We need to look at Veya and all that she is and all that she was born with” – implying her down syndrome.  To which I reply “she was born with a head, two arms, two legs, a body like the rest of us….and an extra chromosome that did NOT put her in this health crisis.  Veya was born with only a cardiac defect which has been repaired and happily working well for her this last year.  Her kidneys were healthy her liver was healthy….they are hurting now from all the various interventions and the poor decision making that was just made.”

Then I am told this week “You know mom it’s okay to admit and say when you have had enough, and that this is hard. Letting someone die with dignity is okay.”

Let me ask you all… “die with dignity..” where have we been hearing that?  We know there is this big push for MAID in our country and that mindset or thought process behind it is absolutely infiltrating into our children's hospitals. 

This is so much bigger than just Veya and her health concerns….and Jeremy and I would never ever want to put Veya in a compromising situation but we have enough lived experience now to know when those discussions are appropriate and we can confidently confess that God will make that very clear to us as her earthly parents as well.  We’ve lived those moments where Veya was “on deaths door” as the doctors like to put it.  This ICU admission was NOT that, but sadly it has done more harm than good to her overall health simply because some felt like it was their job to put an expiry date to her. 

But our God is the one who has his hand in all of this.  He is the one who has the final say.  As my dad reminds us often – “no one can add or take away a single day in Veya’s life”  God’s plans for Veya’s life and the life of our family will continue to go according to His Will.  Though is incredibly hard and difficult to navigate, we would walk this road of suffering again and again if it meant one person sees the character of God, and sees that His hold on His people is so tight that He wouldn’t let me go even if I tried to pull away.  He is the purest form of peace. We’ve known it, and we are experiencing it.   He offers it to me and to you regardless of what comes.