A Week in Review

"God, the Lord, is my strength; he makes my feet like the deer's; he makes me tread on my high places.

Habakkuk 3:19

The last few weeks for Veya had been uneventful, up until this past week.  She remained quite stable at McMaster while we had to wait for a bed spot to open for her at the cardiac ICU in Toronto.  Jer and I were finally able to hold Veya for the first time in the last four weeks of not being able to due to her dialysis cycles.  I got to hold her on my birthday, and it truly was the best gift ever!  As I mentioned in my previous post, we are so thankful to have held her a handful of times before her transfer to Toronto, because unfortunately we are not able to for the time being because Veya is very fragile.

Monday February 19^th (Family Day) Veya was transferred to Toronto Sick Kids.  Her transfer brought about relief and yet had us feeling anxious all at the same time with the change that was coming for our family.  Getting her setup and over to Sick Kids was challenging.  She put up quite the fight when the team went to move her out of her bed and onto the stretcher.  It took 3 nurses to restrain our 2.5-month-old while they waited for her sedation medication to take effect. It was not easy seeing how much medication was needed to put Veya out for the ambulance ride. Not to mention all the extra sedative meds that were given to her upon her arrival at Sick Kids.

I was also quite emotional when leaving McMaster because I was reminded once again just how critical Veya’s condition is.  You get used to seeing her support measures around her bed that the shock factor wears off.  But then when you see them set it all up around her on the stretcher and to see how many things need to be put into place to keep her stable, it just hit me.

Thankfully, I was able to go along for the ambulance ride and help with her care during the drive over to Sick Kids.  Veya remained stable for the 45 minute drive over and they settled her in well in the cardiac ICU. We were tired from this day, so we returned home once we knew Veya was well and stable.

Veya had a stable day on Tuesday and the team took that day to get to know her and to read her discharge papers which were a textbook thickness with three volumes to it might I add.  So, this was going to take some time to read in order to get a good grasp on how complex Veya’s condition is. 

Wednesday morning is where Veya decided to start changing course here.  In the morning the team tried to take her off Nitric and it did not go well.  It caused her to have another pulmonary hypertension crisis and therefore they had to increase her Nitric Oxide support from 5 to 20. The team decided to change out her breathing tube which is a very high-risk procedure but thankfully it went well.  It’s high risk for anyone that is intubated but it’s particularly high risk for Veya because she has Trisomy 21 and sometimes their airways are narrower than yours or mine. 

Wednesday afternoon Veya was beginning to drop a little more frequently with her oxygen and couldn’t recover by herself.  Unfortunately, there was a nurse that was covering for Veya’s nurse while she was away on break and when she saw Veya’s oxygen drop a little, she grabbed an incorrect medication and administered it to Veya.  (This medication is a strong muscle relaxant called rocuronium.)  Veya did not tolerate this well and both her heart rate and oxygen levels plummeted, and she went blue. The team thankfully was able to stabilize her, and they remained at her bedside to do her breathing for her manually until this medication wore off.

This brings us to Thursday where Veya began to really show signs of further deterioration.  All day she really struggled with her oxygen and breathing on her own.  Your oxygen levels should remain above 90 but Veya’s was staying between 40-50.  This can cause long term damage to other organs in her body because they are not receiving adequate oxygen support.  The team had to work around the clock to try to get them higher for her but she was not responding well to the respiratory support they were using. 

Friday morning Veya showed them that she was not okay and that further tests needed to be done.  Sadly, Veya coded in the morning when they had to quickly disconnect her Nitric tube to attach it to a new tank of nitric and all praise to our Heavenly Father, He allowed the team to stabilize her once again.  Witnessing her pretty much code on Wednesday when she went blue and then seeing her code again on Friday has been hard to process.  The team gave her an hour to rest before they attempted that again, which they ended up having success.  They needed to move Veya down to the room for a CT scan and then over to the cath lab for her heart catheterization procedure. 

Now normally the heart catheterization procedure is quick and simple, but for Veya and given her current critical state this was going to be very high risk for the team.  They told Jer and I that she could experience another pulmonary hypertension crisis while it’s being done, and she could also experience a cardiac arrest.  To be best prepared for any scenario they brought in their ECMO team – the life support team should she have a cardiac arrest.  I won’t go into detail about what ECMO is at this time – a quick google search will give you a great idea, but going on ECMO comes with A LOT of risks.  However, in Veya’s case where she is becoming so unwell and critical this may be the only option left for her is what the head doctor explained. Thankfully we knew of ECMO and familiarized ourselves with it so hearing that could be a possibility for Veya took away a bit of the shock factor away when it was being discussed with us.

We praise God for blessing both procedures, Veya remained stable throughout them, and both tests provided some answers for her team.  The CT scan showed them that Veya is struggling with VAP - Ventilator-associated pneumonia.  She has a significant amount of mucus in her right lung which is blocking the main “roadways” for oxygen into the right lung and because of this her right lung is partially collapsed at the top.  Her left lung is not as affected but it is enlarging because it’s receiving most of the oxygen flow.  The plan for this weekend is keep her on antibiotics to help clear it and to do various respiratory therapies to help her clear out this mucus. 

They will need to repeat the heart catheterization procedure, hopefully sometime next week when the pneumonia has cleared because it does not allow for them to get the most accurate numbers regarding the pressures in her lungs and heart for the pulmonary hypertension.  They would also like to perform a bronchoscopy which is a procedure used to look more closely at Veya’s airways and can help break up mucus that is deeper in her lungs.  For Veya this is another high-risk procedure simply because she is very dependent on her Nitric that is delivered through her breathing tube and when they insert the camera down this tube it can diminish that Nitric flow for her and her oxygen that she receives from the respiratory support machine. They will more than likely perform this in the OR and not at her bedside again so it’s in the best controlled environment. 

 Speaking with Jer, he told me that the doctor has seen a day and night difference in Veya from Friday to Saturday and he is very pleased though he reminded us again she is far from out of the woods and has a very long road ahead of her yet. 

 Veya is still being treated for a blood clot that is in her right kidney, and they confirmed it is still present.  She has developed a second blood clot in her left leg where they placed her arterial line.  We pray that these clots may resolve for her and will not cause any complications for her.  Veya’s overall kidney function has significantly improved to the point that they were able to remove her pd catheter line from her abdomen on Saturday.  We give all our thanks to God for bringing healing to her kidneys!  She will have to be monitored closely for the next number of years by nephrology (kidney team) to keep an eye on their function. There is discussions going on to take Veya off her milrinone heart medication which helps her heart pump stronger because the team could see improvement with her heart pumping from her latest echo!  So while this was a very trying week, we are shown by God that we can rejoice in our trials! We can’t understand everything we’re walking through and what our little girl must endure, but we continue to trust God’s plan for us.  He has shown His provision for our family in unbelievable ways, week after week.  There is simply no denying He is very present on this journey with us.  This doesn’t mean He answers all our prayers that we would want, but that’s not why we love our Heavenly Father.  It means we can have a deep abiding faith in Him who gives us what need and directs our circumstances in wise ways we cannot deny. 

 Thank you so much for your prayers again this week, where it felt like everything was falling apart for our daughter.  Your prayers have been a guiding light for us.