Opthamology has come by twice to look at her. They have added an antibiotic ointment to her regimen for superficial punctate keratitis (SPK), which, in simplest terms, is damage to her corneas. I think it is recoverable, so probably not a big deal.
Because of her swelling, they were concerned that there might be a blood clot in her neck. So, they wanted to do an ultrasound. To do that, they would need to remove her trach ties, which is very risky. So, they decided to schedule it at 4:30 today, so that ENT, wound care, respiratory therapy and the ultrasound tech could all be here at the same time.
You should've seen the ENT resident's face when the guy doing the ultrasound told him he was going to have to hold her trach while he did it. He looked so calm, but I felt like I knew what he was thinking. Then he asked him how long it would take. The guy told him about 10-15 minutes. I had to laugh to myself. That poor resident! I'll give it to him, he went to the head of the bed and got comfy. I can promise you that I wouldn't want to do that! He ended up holding her trach for way longer than that as they got her all cleaned up and put some dressings on her skin and addressed some issues.
There's no clot, thank goodness. But she has some skin breakdown on her neck.
The combination of her Fontan physiology (the way her heart works), being on the ventilator, being on Epinephrine, and the paralytic, make for a very challenging situation. Each thing seems to exaserbate another. It feels pretty overwhelming from a parent's perspective.
Here's how she looked after an hour of working on her and cleaning her up.
ENT told me that they are planning on taking her into the OR on Thursday. The goal is to take a look at her airway and see if it has healed enough to take the ET tube out of her nose and wake her up. The sooner she can come off the paralytic, the better (for her body). The attending doc told me this morning that they are having to increase all of her doses and that they were going to start Methadone today.
Today, my friend Meredyth came up to visit.
It was very good to have her here to distract me today, considering how bad Harlie looks. We talked, walked and got lunch, which was great. Thank you Meredyth!
I am about to head back to the Ronald McDonald House for the night. That will make for six miles of walking today! If only the sun would come out...
Thank you for all the continued love and support! Just can't tell you how much it means to us!
Much love,
Christy xo
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