CLAY HAS BEEN TOTALLY OFF THE VENTILATOR FOR FIVE WHOLE DAYS & NIGHTS!!!!!
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| Wooohooo :) |
We have had appointments with Pulmonary, Nephrology, Cardiology, Speech & ENT over the past week & we've got good reports at them all.
At the pulmonologist, we got the okay to discontinue the vent at night--his settings were so low and he's done so well without the vent at all other times, we felt comfortable making that call. I put the pulse oximeter on him at night to monitor his oxygen levels and he's never made it alarm (it would alarm if his sats dropped below 85). He usually runs 92-96...No vent, no extra oxygen at all...CRAZYYYY!
We also started the conversation of the next step: TRACH DECANNULATION! Since he's off the vent now, there's no need for the trach, so let's get that thing outta there, right?! Doc referred us to the Ear, Nose & Throat clinic to begin the process.
We had the appointment with ENT today and the first step in getting the trach out is to make sure his airway is clear. Sometimes granulation tissue can grow around the trach site and can block the airway, so we're scheduled for a laryngoscopy & bronchoscopy on September 18th. It will be a sedation procedure, but an outpatient one, unless something funky happens...but hopefully things look good in there! I believe the doc said if all is clear the next steps would be to downsize the trach, then do capping trials & then we'll do a sleep study before we get it out completely. If things go smoothly, we could have the trach out in 2 or 3 months. Eeeeeeeeek! Lots of good vibes & prayers, please!
At our cardiology appointment, they also want to follow up with another ECHO to make sure his cardio status post-ventilator hasn't changed. So we're piggy-backin' that procedure with the others on September 18th. He had an EKG done today & Doc said things looked good. He was very pleased with everything, which is always reassuring to hear.
At the nephrology appointment, we discontinued a couple of his medications and we're supposed to have labwork drawn in a couple weeks to make sure it didn't rock the boat. I'm confident he'll be fine--I'm telling ya'll, he's making this easy on ol' Mom. All this no-ventilator, no-meds business..well, we have a couple meds, but still... It's awesome!
At our speech evaluation, we got a new Passy-Muir valve, which helps him to vocalize. That's the ONLY thing I miss about the ventilator--Clay would use the ventilator pressure to move air around his trach & he'd be able to talk that way, but now he can't do that unless he has this valve. And the valve works great--when he'll let us put it on him, the little rascal! He will not leave that valve on for nothin! As soon as I put it on, he starts coughing. It's a fake cough at first, but because the valve blocks air from being exhaled out of the trach, it really does get him choked up, so he'll cough and gag and carry on until someone pulls the valve off (it's usually him), but I don't like to force it on him--a lot of times, he'll work himself up til he's puking and that's no fun for anybody. When he's good and distracted, he'll leave it on and jabber up a storm--but I haven't been able to sneak it by him in a couple of days. I swear, I don't know what I'm gonna do with him! He pulls off the little trach nose piece too and will launch it across the room. I fight with him all day to try to keep that trach covered. I'm just waiting for the day he tries to stick something in it. If any of my trach-mommy friends happen to be reading this and have any suggestions, please pass them along...this is driving me nuts, lol!
Of course, Clay hammed it up during all these trips out & about...his new thing is to fist bump everyone he sees. It's the cutest thing ever! He'll hold his little fist up in the air, just waiting for a taker...once someone gives him a bump, he'll cheese so big...it's a little ridiculous. He is just so infectious, I love to watch him make people smile. He sure is a blessing.
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| What a stinker! |
He is also doing better in physical therapy. We are now having to travel to the clinic a couple times a month for sessions, but I think he's a little more receptive to it in the new setting...a little. He's still pretty ornery. He doesn't like the fact that our PT makes him work, haha! Slowly but surely it's paying off--he is now pulling himself up to standing! He'll take a few steps from side to side while he's standing in front of something but he's awfully wobbley...his little hips are just so weak still. But he'll catch up in his own time...we are making progress! We also got a neat contraption last week called a Gait Trainer, it's a little walker essentially, but it's pretty cool! I think it's gonna be really beneficial for him. We're still waiting on the daggone ankle braces to come in...insurance must be holding up the process but hopefully they'll be in in a week or so.
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| Big boy, pulling himself up to standing all on his own! Look how proud he is :) |
We're still having issues gaining weight. He's not lost anymore, he's just hanging steady at about 23 1/2 lbs. He has grown a couple of inches longer though. We upped his total daily volume last week, so hopefully that will help. If I could just get him to keep all of his feeds down during the day, we'd be doing good...poor lil guy has a super sensitive gag reflex. He'll cough and then, blaahhh, there goes his whole feeding. It's very frustrating. I really think that once we lose the trach the issue will get better but in the meantime, I'm trying to space his feedings out more during the day and not give him so much volume at once. Y'all say a prayer we can find a happy spot. We need to get some meat on his bones!
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| I don't think dog food is the answer there, buddy.. |
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| Cheers! |
Lots of love & peace to all of you! Thank God for wonderful blessings!
XOXOXO
