Post Op Recovery

We have been a bit silent here on the blog, mainly because things have somewhat quieted down for Veya, but in the quietness, there has been more time for reflection…and some discussion amongst her team here about transferring her care back to McMaster.  So with that all we have just been processing some emotions that have surfaced together from our time here at Sick Kids. 

Living life in the CICU has been incredibly eye opening in more ways than one.  There have been things we felt prepared for and so many things that we were not.  It can be easy to live one breath to the next, but the reality of just how fragile our lives are….escapes us most days. We didn’t expect how much we would be impacted by every other family that shared the room with us these past couple of months, watching them go through the hardest moments of their lives too.  Our chests would tighten every time the alarms went off and our hearts would ache having watched parents walk down the hallway with tears streaming down their faces.  We witnessed two of our dear CICU friends experiencing their parenthood journey for the first time within these walls with no support system because both of their families live out of country.  We watched parents’ hearts shatter into a million pieces and walked past mothers crying alone sitting on the floor outside their child’s unit.  We saw fathers pacing in the waiting room trying to keep their mind calm as they waited to hear an update.  We watched parents walk off the unit for the last time carrying all their belongings but leaving with empty arms only having experienced life with their baby earth side within these walls. We heard a mother scream after the doctors came in and told her and her husband there was nothing more they could do for their son who was on ECMO life support. We watched parents completely fall apart when we asked “How are you?”  in the CICU family resting room.  These are images and sounds we will never forget. 

But even though we saw families going through the hardest moments of their life, we also saw mothers pick themselves back up off the floor, wipe away their tears and show a strength that can only be given to you from our Heavenly Father (whether they knew that or not).  We watched husbands hold their wives up and be the pillar of strength they so desperately needed.  We saw the happiness on parents’ faces when they finally made it out of CICU and into the step down unit with their child. We saw little heart warriors walk the hallways taking their first steps after heart surgery.  We saw a little boy shuffle around holding tightly to his mom’s arm after getting his heart transplant. 

Right alongside all the pain and suffering, we witnessed miracles being worked out in these little tykes.  We watched parents make unthinkable decisions and put their child first over and over again.  We saw sleep deprived parents making one more cup of coffee so they could continue to stay by their child’s bedside comforting them. 

Never could we have imagined or even come close to comprehending  what life was like within the walls of a CICU and it feels important for us to try and share that with you all to help understand how much we have been seeing every day and the emotions that have come along with it all outside of Veya’s health condition. We can promise you, that every time that code alarm went off, every parent was giving their child an extra kiss and saying a prayer for whoever that family is because they know if could easily be their child next. Though we know the road ahead for Veya is still quite long, we are so incredibly thankful to God for blessing us and bringing us safely to the other side of her heart repair. We know without a shadow of a doubt….that He will continue to go before us in these next steps with Veya’s recovery and therapy. 

As for a current update on Veya…she is continuing to do well in her recovery. To recap a little here… Veya is still being treated for two blood clots that she had from earlier on (one in her kidney and one in her groin) She receives daily blood thinner injections to her thigh. She is also dealing with ongoing kidney stones and gallbladder stones (none of which are causing any serious blockage issues) When she had her breathing tube removed, she was placed on BIPAP for oxygen support and has since been moved down to CPAP support.  She does sometimes require the BIPAP support due to a current infection that the team is trying to figure out and because her liver is enlarged.  We have been told that because she was in heart failure since she was 3 weeks old, the numerous medications she was on and just her overall health complications that happened along the way….this has caused her liver to be slightly damaged and enlarged. It will take some time for her liver to heal.

We have since been able to hold her again and have been making up for the loss time!  Veya really enjoys getting out of bed and being held.  She loves holding hands and is often searching and reaching for ours or the nurses.

She continues to do light physio therapy….it ends up having to be cut short because it’s hard for her to be in an upright position due to her liver being enlarged.  It presses up into her lungs which causes a lot of coughing fits.  She also has lost all ability to swallow, so she ends up in a not so lovely cycle of coughing, gagging and throwing up.  We can’t work on any oral therapy yet because of her oxygen needs with the BIPAP/CPAP. 

Lastly, as mentioned earlier, there are discussions happening as to when we can expect a transfer back to McMaster.  From the cardiology side of things they are happy and confident to send her off, but the other teams involved in her care are having to weigh in at the moment given that she has an infection starting

and it looks like it’s possibly coming from an abscess in her gut area.  We should know more about that next week when they run imaging to see if it’s grown or if it’s gone away with her antibiotics. They will not move her if she is unwell.

Both Jeremy and I are spending the weekend down here at Sick Kids, along with our older two girls and it’s been so nice to have this time together.  The girls got to attend an event today put on by Sick Kids called – Cardiac Sibling Day where they could meet other brothers and sisters of heart warrior children.  We enjoyed a breakfast and lunch with the families and the kids got to participate in various games and activities.  The girls were very excited to share and talk about their little sister Veya with everyone.  Afterwards, the girls got to spend some one on one time with Veya, curled up beside her in her bed, and they just LOVED that! 

Before I sign off here for the night, I would love to share some words of encouragement with you all as you have done for us on this journey.

Mark 10:27 - Jesus looked at them and said - "With man it is impossible, but not with God.  For all things are possible with God."

Hope, Faithfulness, Assurance, Concern, Love - all these and more resound in the name and character of our Awesome Father in Heaven. As His children we have permission to pray big. To believe in the unlikely. To hold out for that which all others have given up.  All things are possible with God.  We can really bring all the impossible situations in our lives to Him and ask Him to do what only He can do.  If there's anything God has shown to us with Veya...it's that we can believe Him in the waiting and trust Him to be true to His Word.  He will never fail us.