We have had more excitement this week! First – Isaac continues to amaze us (us, including his speech therapist) with his communication skills. We knew he had some amazing thoughts, and it is wonderful to watch him develop the skills that will allow him to really share with us. To watch him create full sentences on his Ipad is nothing short of amazing.
As of today, we are two weeks away from Isaac’s next bronchoscopy – a bronch is a way for his Ear Nose Throat surgeon to get a look at his airway and work on anything that still needs fixing. Our hope is that the surgeon will take a look, like what he sees and proceed with a capping trial. A capping trial would mean Isaac is only breathing through his real airway, his trach will be covered with tape and he will breathe like a normal child. If he can do this for a month the trach can come out! Let me add here, the trach is still in place, so not only is Isaac forced to breathe through his mouth and nose, but he is doing it with a pretty nice obstruction in place – since he now has to breathe around the trach tube in his airway.
To back up from this point, there are signs Isaac can give us that he may be ready for a capping trial – a major one is being able to wear his Passy Muir Valve (PMV). This valve covers his trach – it allows him to breathe in through the trach, but forces him to breathe out through his mouth and nose. Earlier this week I put the PMV on him while he was sleeping, so he couldn’t panic and pull it off. He was able to wear it (and breathe) for 10 minutes before waking up and pulling it off. The battle is just that it makes Isaac feel uncomfortable, it is a differnet way of breathing. Of course, we also have to watch for signs that he is unable to breathe. He showed us he can breathe when he napped wearing it, and then the battle began! Today, Isaac finally let his dad put the PMV on – he wore it for a total of one and a half hours tonight!! This means his airway is still working, and we could actually be capping his trach two weeks from today. Of course, the bronch and Isaac’s reaction to capping will be the true determination, but we are feeling hopeful
Last – I finally got around to checking messages tonight (that happens every week or two!), and we had a message from Isaac’s “wish granters”. He has been approved for a Make A Wish trip to DisneyWorld – we are booked for October 9th through the 15th. He deserves this so much. I almost didn’t look into it, he isn’t an obviously sick kid, and it never crossed my mind. Once it was suggested several times by a few nurses I decided to check into it. When I spoke to the organization the first time they pointed out that it doesn’t sound like Isaac has had any life threatening experiences….. then I realized it. His trach is automatically a qualifier – if it comes out or clogs (when he doesn’t have the ability to breathe around it) he cannot breathe….. that sounds pretty life threatening to me! Once they spoke to Isaac’s doctors they were on board, and it’s been a wonderful experience working with them. Isaac will be thrilled to take this trip, and we can’t wait to be a part of it with him.
We are so excited with the progress Isaac is making, and can’t wait to share more good news!