This week has felt really big yet has flown by as well. So much good and some difficulty as well.
Isla had her exploratory airway surgery on Wednesday. The results were very bittersweet. We went into it with quite a few nerves about what would happen. After her last four VEPTR surgeries, her airway has continued to worsen quite rapidly and we were told there was a chance that surgeries would have to stop, which would be heartbreaking as they are keeping Isla breathing as she grows.
Dr. Borek (ENT airway specialist), Dr. Corcoron (Pulmonary), and Isla's medical team told us Isla's surgery was successful, which was a huge relief. They were able to fully inspect Isla's airway and lungs and while her airway is very critical and difficult, they were able to find a way to try to get Isla intubated for surgeries... They found an option for intubation and was not extremely difficult to gain! Huge miracle. WE PRAISE GOD FOR IT!
The ENT team felt this intubation option should work for now. There is no way to tell how long this will work, but we will take it with huge thankfulness and hope it will work for many surgeries.
Isla does have an acute angle in her upper airway... her airway folds over there. This makes it extremely difficult for any visual of her airway in order to intubate. She also has a very zig-zag airway leading to her lungs which makes intubation and access very difficult. While one side of her nose does not have good access to her airway, the other side DOES! Cue thankful tears.
The difficult news that was confirmed and decided is that Isla will never be able to have a tracheostomy. There are no options for this and that is honestly heartbreaking. When you have a critical airway that has worsened and will worsen over time and with growth, the hope is for options to be able to breathe as you grow. A tracheostomy would be a next step when needed for breathing and that is just not an option for our girl now, due to Isla's body structure and where her airway is within her structure. This news is scary - to not have that option when it will be necessary. We talked with pulmonary and on Monday, after Isla's VEPTR surgery, pulmonary will come and meet with us inpatient to discuss how to support Isla's breathing as she needs it over time.
For now, we are just SO grateful that Isla is breathing well and can have her next VEPTR surgery and are praying intubation goes as smoothly as we hope with this new detailed plan in place through the airway specialist.
We are focusing on the GOOD and keeping our hope in Jesus for the future.
(CLICK HERE) VIDEO OF AIRWAY SURGERY DAY
Isla was pretty worn out after the airway surgery. We had to move hotels that same day and left to go outside the city, about an hour away, to stay for a few days.
We were supposed to see Dr. Anari (Isla's orthopedic surgeon) on Thursday, but he found us after Isla's airway surgery on Wednesday and told us to just go have fun and not worry about another consult. He is the best. So, we got to have a full few days of no appointments and no agenda - that NEVER happens, and we have been SO grateful for it!
We have had some really sweet memory making moments and it has still been mixed with some anxiety and nervousness for Isla. Hard to fully enjoy the fun when you know surgery is a few days away again. We have been going through Isla's visual book of each day to talk through all that is happening and help her process it all. She is so brave. Visuals help Isla in processing what is to come - it is easier for her brain to try to understand a plan this way. And, while many of these things trigger anxiety for her, she can see it, know that it will happen and get crossed off in the book, signifying moving forward from it.
For family fun, we have been able to go to the Elmwood Zoo, eat yummy ice cream, visit Valley Forge National Park, go disc golfing, play at some parks, go on some pretty walks, go swimming in the hotel pool, and get yummy donuts recommended by Isla's medical team. It's been so very sweet, and we don't take for granted the time of fun together. such a gift!
(CLICK HERE) GLIMPSE OF FAMILY FUN DAYS
Today is a rainy day here, so we are resting well, playing well, and prepping to head back to downtown Philadelphia tomorrow.
On Monday, June 16th, we will be checking in at Children's Hospital of Philadelphia for Isla's 14th VEPTR surgery (16th surgery overall).
Will you pray with us for Isla as she faces this again? For her body to be so strong and her mind and heart to feel peace through the difficulty?
Thank you for praying for our family and our warrior girl!
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