|Headwrap from Mint + Arrows
It's been a VERY busy few days around here, and I almost wish I had the time to do an update earlier this week, instead of a bigger one today. It hurts me to write this, but as of today, Evanna has been in the ICU for 150 days. Again, our baby girl has been in the ICU for almost 5 months, totaling 150 days. I believe sometime next week, we will also surpass the milestone of Evanna being in the hospital for longer than we had her at home (Evanna had her first open heart surgery just one week after she turned 5 months old).
Now that Evanna's heart is on the mend (they're still trying to get her heparin levels just right, but it's proving to be a little difficult - classic Evanna, never does anything by the book), they are back to focusing on her airway issues. Over the last few days we've noticed that Evanna's pupils were unequal. Then on Sunday night and Monday morning, I noticed that Evanna kept twitching her head to the left. She was doing it during rounds on Monday morning, and at first Dr. Aditia thought it was because I was standing on Evanna's left. I moved to the other side of Evanna's bed, but she kept doing it. They decided to do an emergency CT and within 10 minutes, Evanna was rushed off for a head CT. I was definitely freaking out thinking Evanna had had a stroke, and the only reassurance I had was that Evanna was still moving all 4 limbs.
A few hours later, the preliminary results came back saying that everything was fine, and she didn't have a stroke nor seizure. They're best guess as to why Evanna was acting the way the she was is due to the amount of drugs that she was currently on. I can't emphasise enough how much drugs Evanna is on, and her extremely high drug tolerance. I'm not kidding when I say that she is on adult doses of sedation drugs that would probably knock me out.
Later that day Evanna also had another ECHO and ultrasound to check her heart and old IV access points for bleeding. Nothing significant came of those, so we spent the rest of the day waiting for Evanna to have a bronchoscopy.
Finally just after nurse shift change (Jaymie was our nurse again for the night), the OR called and was ready to take Evanna, so Jaymie and her buddy nurse quickly packed Evanna up and we all headed for the OR.
Dr. Eksteen came out of the bronchoscopy procedure room and was beaming from ear to ear. He said that Evanna's airway looked amazing. He couldn't see any malacia, and her trachea was wide open. He stated that she had the best results you could ask for from a pexy (they did this procedure during her last open heart surgery, when Dr. Rebeyka sutured/pulled her aorta and conduit forward), and "if" she were to get a tracheostomy, she would most likely come off the vent fairly quickly and have an "early decannulation". Decannulation is the process of taking out the trach, and I was surprised that Dr. Eksteen would say those words to me, because ENT's don't like to give false hope or timeline in case the child requires a trach for a prolonged amount of time.
Prior to this bronchoscopy, I was definitely leaning towards Evanna having a tracheostomy. I want my baby girl back, and it's not easy sitting beside her bed day in and day out, and she's still somewhat sedated and still INTUBATED. A tracheostomy is a relatively straight forward procedure, with only about a week of recovery time, and we could actually work towards going home, HOWEVER at the same time, so much is involved with a tracheostomy from a lifestyle point of view and due to training, and setting up of homecare, it would still take months before Evanna could come home. So while it won't get us home quickly, it would at least give me Evanna back. She would no longer need to be sedated or intubated, I would be able to pick her up as I please and play with her, work on weaning the amount of drugs she's on and get her strength built up.
However, Nick, Dr. Rebeyka and Dr. Cave want to try one more wean and extubation. Now that we know Evanna doesn't have airway issues anymore, it's still as possibility that Evanna could extubate successfully. While I initially wasn't on board with the idea, because I truly don't want to see Evanna fail for the 7th time, I also can't argue their points. It seriously has not been an easy decision, and I'm still completely torn. Part of me just wants to do the trach so we're taking a legitimate step towards going HOME, but at the same time I don't want to trach Evanna if it's unnecessary. If a trach guaranteed us a ticket home within weeks, I would have signed on the dotted line months ago. Evanna has been through so much, and I kind of just want to give her a break. Due to her extremely complex heart, hospital visits, surgeries and procedures will become apart of our life, and I just want to do whatever necessary to limit how much time we spend in the hospital. So when Dr. Cave and Nick say to me "what's 1 or 2 more weeks?" - well they're everything. If Evanna fails this extubation, that's two less weeks I could have had at home with my baby girl. That's two less weeks of Evanna growing, developing and being just a regular baby. It's hurts so much that I just can't come in, pick up my baby whenever I want too, and I have limited opportunities to hold and snuggle with her on a day to day basis.
Anyways, I have somewhat reluctantly agreed to another wean and trial of extubation. There is no guarantee that it's going to work, because while surgically and anatomically her airway looks great - you can't fix lung and muscle weakness, and that just takes time (remember, Evanna has had a machine breath and do all the work for her for the past 5 months. Her lungs are incredibly weak and it's going to take time for them to work well again). I truly hope this works, but I'm not sure how I'm going to handle the possibility of another failed extubation.
Last night and today they have started to work on weaning Evanna. So far it's going well, but they're also concerned that her right diaphragm will give us trouble again. So far it hasn't, but history has shown us that it always needs to be plicated to give Evanna a better chance.
Continued support and prayers are needed, and thank so much for keeping our family on your mind and in your thoughts.
xo The Irvine Family