(guest post by kate)
But they said no, no, no. I arrived this morning with a bag packed for Adam (after noticing that he doesn’t have a lot of pants that will work for rehab) and got the last of his stuff packed up in his room. When 10am rolled around, which was the time we were to leave for Helen Hayes, and I still didn’t see transport I began to wonder. Fifteen minutes later Adam’s attending and nurse practitioner came in and said that because Adam had a fever yesterday morning of 101, they wanted to draw some cultures and watch him for another 24 hours. While I’m glad they’re being cautious, Adam and I were both disappointed about not being able to go to rehab today. We were all psyched up and with the next step in sight, we’re anxious to get there. He hasn’t had a fever since yesterday (knock wood), so as long as he doesn’t spike again tonight he should be able tomorrow morning.
Adam was able to speak yesterday! It was so fantastic to hear his voice after weeks of reading his lips. Speech came in yesterday morning and gave Adam ice chips, and then a few spoonfuls of applesauce that was dyed BRIGHT GREEN. He was able to swallow the applesauce, and when they suctioned him after the test he didn’t have any green secretions out of his trach. Later in the afternoon we did see some green tinged secretions come out of his trach, which means he’s at risk for aspirating. The speech and swallow team said that he did well on the initial test, and thought it was appropriate to have him try the Passe Muir valve (PMV). When the PMV is in place, Adam can breathe air in through the valve, into his trach and into his lungs. When he exhales the valve closes and forces air up through his vocal cords and out his mouth and nose allowing you to hear him speak. It was really cool - I was able to hear him talk in the afternoon when I came over on a break from work and he totally made me cry telling me how much he loved me. It was really awesome. The PMV looks like it takes a little getting used to. Adam can cough up secretions but he can’t quite get them at the back of his throat, so he doesn’t keep it on for too long at the moment. Much like the trach collar, I think he’ll have to work up to keeping it on for longer periods. Last night we were able to put the PMV back in place and call both his mom and his dad so he could say a few words, which was a huge hit. His voice sounds different with the PMV in place - it’s higher and has a Kermit-like quality to it, but it’s definitely his intonation. The respiratory therapist said that he’ll sound more like himself with practice, but I’m just happy to hear his voice at all. :) I’ll try to get a recording of it and post it in the near future.
As for further swallowing tests, Adam will likely have as FEEST (flexible endoscopic evaluation of swallowing) at Helen Hayes. What’s a FEEST? (It’s pronounced “feast” and brings to mind all kinds of images of banquets of food that we could magically get into him). It’s where they put a fiberoptic scope into Adam’s throat to watch him swallow. Sounds fun, eh? From the reading I’ve done, an ENT and speech language pathologist will feed him foods of various consistencies colored with dye, and watch the food as it moves from the back of the mouth through the throat, and into the esophagus. So here’s hoping he’ll do well with the FEEST when it happens!
Keep your fingers crossed that there are no further fever spikes overnight, and that we’ll be off to Helen Hayes in the morning. It will take a few days to get him settled and have a schedule made up, but once we know what his daily routine is going to be I’ll post some good times for visiting.