If you've read anything that I have posted over the last few days, you will notice that I've eluded to the fact that Evanna will be having another surgery this week (her 6th surgery to be exact), as Nick and I have finally decided to proceed with a tracheostomy. This was not an easy decision for us, and it came after months of tears (on my part), heartache and exhaustion. The word "tracheostomy" was originally brought up to us back in November when Evanna failed an extubation for the third time, however it was not something Nick and I were interested in at all. Since then, the medical team here at the Stollery hospital has done everything they could to help Evanna extubate successfully off of the ventilator without resorting to a tracheostomy. Unfortunately, we have still been unsuccessful.
Though Evanna's airway is looking so much better than it did month ago and she is close to extubating, Evanna has been on a ventilator for over 5 months, which has deteriorated her muscles and made her incredibly weak. Dr. Eksteen (Evanna's ENT) believes she'll be decannulated (the process of taking the trach out) early, so that's a positive in my books. Evanna's tracheomalacia has cleared up - which is a miracle in itself, as it can generally take years for kids to grow out of it, and her trachea is wide open (thanks to the pexy Dr. Rebeyka did during her last open heart surgery). We believe her muscles and lungs are just very weak and need some time to build up strength and work on their own again. A trach will allow Evanna to start moving, developing and growing, and it will allow us to get on with our lives and take Evanna home. So why were we so resistant in the beginning? A trach is a BIG deal. There is a LOT involved with a trach, and it will impact our life in a major way. Evanna will have to be monitored 24/7, which means homecare will be involved and a nurse will be in our home every night while Evanna has a trach. Nick and I will have to be trained on how to do a trach changes, as well as learn how to care for it, clean it and suction Evanna ourselves. I know it won't take us too long to get a hang of, and I'm certain we'll be pros in no time!
There are some downsides to a trach, and many reasons as to why Nick and I were so resistant to it in the beginning. Evanna will be at greater risk for infection - so please excuse our need for you to wash and sanitize your hands if you come into contact with her and into our home. Also, setting up homecare can take awhile, so just because Evanna gets a trach, won't necessarily mean we'll be home anytime soon. However, because we DO live in a large city, it shouldn't take too long to arrange and get setup. I was initially thinking of doing our homecare privately (we would be allocated the money and then hire our own staff), but because we're sure Evanna won't need a trach for too long, we may just have Alberta Health Services take care of it.
Anyways, we are incredibly nervous about this next step, but at the same time, we have been given so much guidance while we made this decision, and we're confident that we're making the right choice for Evanna. I have meet many trach moms along this journey that have made this decision a lot less scary. My hope is that Evanna will come off the vent fairly quickly and wean to just the trach in a timely manner. Then I hope that by early next year, Evanna will be able to have the trach taken out and be officially trach free. No exact timeline can be given, and it's purely up to Evanna's body and how fast she can build up strength again, but I'm still hopeful nonetheless.
Evanna goes in for surgery at 3pm TOMORROW, and we have already prepared ourselves for a somewhat rough recovery. Evanna needs to remain relatively still the first few days after the initial procedure, which means she'll be heavily sedated and maybe even paralyzed at times. Evanna has an already incredibly high drug tolerance level, so it'll be interesting to see how well the doctors are able to maintain her sedation. A few days after surgery, they'll do the first major trach change, and hopefully Evanna will just fly from there. It'll be so nice to see her full face again (well, she'll still have an NJ for feeding), and hopefully we can take steps to busting out of here! I'm definitely looking forward to just coming in and picking Evanna up without the help of nurses and RTs, and I can't wait to work on her strength and endurance and get back to where we were when we first brought Evanna into the hospital. We have lost SO much time in regards to her development, and hopefully with the help of therapy, we will get back on track in a timely manner and be somewhat of a "normal" family again in the comfort of our own home.
I would also like to take this opportunity to talk about a special event that I have created for Evanna and her 1st birthday. Due to the situation and our circumstances, we will most likely be spending Evanna's 1st birthday in hospital, and I want to make it as special as I possibly can. I have already received requests from people wanting to send gifts to Evanna, but what I would really appreciate, is if we could shower Evanna with birthday cards from all over. She will be turning ONE on April 29, and I want to take this opportunity to show Evanna how truly loved she really is and show her how many people care for her. We've had thousands of people follow our little journey (as showcased in my daily readership and Instagram followers), and I think this would be a great opportunity for people to get involved and be apart of this special and amazing little girl's unique birthday. Please click HERE to join the public Facebook event that I have created and send Evanna a birthday card! I would also appreciate if you could SHARE this event and INVITE your friends and family to send Evanna a birthday card too! All the information on where to send the birthday card is located within the Facebook Event description, and I would be more than happy to answer any questions.
Thank you so much for continuing to follow along and keeping Evanna in your prayers. Tomorrow is such a big and scary day for us, but we hope it will be another step forward to getting to take Evanna HOME!
xo The Irvine Family