We are asking for prayer for our Isla girl.
In short, Isla will be admitted to the PICU on Monday morning, will be getting started on BiPap, doing more testing, talking with all her medical team here (and talking with her team in Philadelphia), and we are praying for clear answers and wisdom for our sweet warrior. Continuing to pray for miracles.
I've been really quiet since Isla's last surgery the end of September. We've needed time to process. I still haven't shared all that had happened, but it was really difficult and traumatic...life-threatening.
At the end of Isla's surgery, her airway collapsed during extubation (taking the breathing tube out) and multiple options of getting air to her lungs were not working. There were multiple attempts to intubate her again, but they were not working. The situation became life-threatening. We praise God for her amazing medical team and a re-intubation attempt finally being successful - they got her breathing again. Praise God!
They gave her more time intubated after surgery and the next attempted extubation was successful. Isla just needed oxygen in the PICU - truly a miracle.
But then, a few days later, circumstances grew worse on our flight home.
Isla had a hypoxic medical event. We were about an hour from landing in Seattle. Isla had been struggling a bit on the first flight, but we thought it was a pain issue and during our layover, she seemed to be feeling a little better. Things took a turn for the worse on our second flight.
What we knew on the plane, was that Isla had a desaturation in her oxygen, she went limp, cold, and wasn't responding. So scary.
God is truly in the details - We flew Delta and they handled this event with great care. They immediately got us the help needed, immediately got her oxygen when we said she needed it (truly, they did not question us) and the pilots called down to the ground crew to land ASAP and to the closest gate. Someone (who wants to remain anonymous) had gifted us first class tickets, so we were right up front (God knew... we are generally always seated in the very back of the plane)
We landed and the fire department and ambulance were on board immediately. We got Isla to Seattle Children's and learned that her heart levels were off the charts - to heart attack level. We were told they never see a child at these levels. We were heartbroken for our girl and we were in shock.
It's been a huge journey to figure out exactly what happened, but what was determined at the time, was that high altitude affected Isla's oxygen - Isla had the desaturation in oxygen, she was holding too much Co2 in her body, unable to release it. This caused her blood to flow too slowly to her heart and it stressed her heart.
Slowly, Isla's troponin levels (for her heart) were trending better and we brought our girl home to recover from surgery.
Isla had many medical appts and tests once home - so we focused on what mattered most and we have just been trying to slow way down and spend quality time together. We had the most blessed quality time over Christmas... so simple, yet so very special. Through doctors recommendation, it was decided that Isla should not attend school in person, so her sweet teacher and para educators rotate and come for a couple of hours each day here at our house. Such a sweet support for our girl.
Isla went through some very telling tests, one being an altitude simulation and she had desaturation in her oxygen right away. We knew we could never fly again without her on oxygen, but there have still been more difficult symptoms with her medical condition and over the last couple of months, we have seen her gradually worsening. So so hard.
It's really incredible the "intuition" that God gives. Both Justin and I have been documenting, watching, and communicating with Isla's team and this week we had the strong sense to check in with her doctors more urgently. They wanted her to come in on Friday for labs and those came back right away showing a trend for the worse. This includes her oxygen, Co2, and her heart.
Through discussion with her team, it was decided to have Isla admitted to the PICU tomorrow (Monday), start her on BiPap, and do more investigating to try to pinpoint all that is going on. Her team has been preparing for her admission. We are unsure how long Isla will have to be there. Could be a couple days, or many more days.
We need prayer for very clear answers to some questions both new and old.
Three different teams have testing, imaging, etc. that they want to do.
We need to pray for our sweet girl. She doesn't understand any of this outside of "breathing needs help, heart needs help"
Being in the hospital is so overwhelmingly scary for her. She is sad. Not being able to understand what is going on is so hard... she is so incredibly brave 🩷
We see God in so many details...
We came home from Isla's surgery and medical event really broken. It is heartbreaking to see your child suffer - to live with a condition that gets worse as she grows. We are so thankful we have a God that sees, cares, and knows how this feels. Even when we feel scared of so many unknowns, he is so gracious to remind us of his sovereignty and love... we HOPE because of him.
Our hearts are heavy and also very thankful for so much. There is sorrow while there is also joy.
Sometimes we are not sure if many people see these posts, but we see God at work in our lives and know so many must be praying. Thank you for praying for Isla. Thank you for praying for our family.
