Hi Everyone,
Sorry for the impersonal email but there’s just not enough hours in the day to reach out to everyone individually!
As you know, I’ve been working with Trey’s medical team to wean him off of his ventilator and get rid of his trach. The local docs finally referred me to Cincinnati Children’s Hospital where I took him in May. After a battery of tests and hours of meetings with various specialists, we found out good news and bad news – but it’s all good info.
The good news is that Trey’s lungs are bad but not as bad as we thought. They are healing and have demonstrated that they’re stronger and work better than we’d been led to believe. We’ve been taking him off of the ventilator for an hour a day and he’s done great! Within a year, we should be able to wean him down to only needing the vent at night – very exciting!
The bad news is that Trey has no upper airway. Airways are several inches in diameter to allow airflow into our lungs. Trey’s airway is about half the size of the opening of a straw. This explains why the situation becomes critical when his trach comes out.
I’m taking Trey back to Cincin. tomorrow where he’ll have airway reconstruction surgery on Thursday. This is a very delicate procedure where they take cartiledge from his rib and create a new airway for him. Trey will be in the hospital for about 2 weeks and then we need to go back every 5 days or so for additional testing. We’ll be in Cincinnati until early September. After that, we’ll go back every 6-12 weeks. Yeeha! J
I’ll have my cell and will be checking email. I’ll send a note within a few days of the surgery to let everyone know how he’s healing. I’ll be staying at a long-term stay hotel. I’m also set up for Skype if you’re familiar with that.
The hardest part just might be not seeing the other kids for almost a month!
I’m not at the freaking out yet but probably within the next 8 hours! In the end, it’s all good! Having a kid with no equipment, getting the nurses out of my house and not having intimate relationships with Trey’s docs will be a welcome change! If all goes well, we’re about 9 months from that.
Send your thoughts and prayers. Talk to you soon.
Love,
Tami