CAN IT REALLY BE THAT SIMPLE?! SURE HOPE SO

So happy to share that last night was the first night in several weeks Colby and I got a full night's sleep. Oh how sweet it is! I put him to bed last night, no 2^nd shift nurse. Kept him up until about 10:45. He went right to sleep. I checked on him a couple times, then I went to bed around 11:30. The next alarm I heard was his feeding pump going off at 6AM this morning. Sleep. Oh glorious, wonderful slumber, how we have missed you!

We finally figured out Colby's sleeping issue, I hope so. Oh wait, no, “we” didn't. I did. Four nurses working here, two of which are RN's, and I'm the one who figures out what's up with sweet boy. Shaking my head and rolling my eyes and letting out a big, frustrating sigh. One nurse only works here a couple shifts per month, so I'll cut her some slack. I love it when the nursing agency sends nurses that have “significant trach, vent and pediatric experience.” Yeah, what the fuck ever. They don't have significant Colby experience, which is rather obvious at times. I think it's safe to say when it comes to Colby's overall care, ultimately it's me, myself and I. Anyways, the problem was a clogged vent filter again. Colby had a bad day Saturday. His oxygen was a few points lower than normal, and his heart rate was high pretty much all day. Saturday overnight was miserable. He never did fall asleep, then around 2:30am his oxygen dipped to 87 and his HR was 130. I was thinking he had a trach plug and that I was going to have to do an emergency trach change, by myself, in the middle of the night. Good times, good times. I kept thinking, what am I missing? Why has he been struggling? Then I thought well, what the heck, we haven't changed his vent filter in a couple weeks. So I changed it and ta-da, instantly Colby was better. As soon as I removed the old filter, a puff of white smoke/powder came out. Reminded me of chalk dust or drywall dust. So maybe it's the vent pulling in construction dust and debris still?! As soon as I changed the filter and hooked everything back up, Colby was just fine. Oxygen returned to 98. Heart rate went back down into the 80's. Tidal volumes improved and overall I could tell Colby felt better.

So there you have it. All the worry and stress. All the sleepless nights. All the calls to Cincy and consulting with other SMA moms. It came down to a clogged vent filter that I guess was just getting worse over time. Needless to say we'll be changing out Colby's home vent filter more often, starting immediately. I'm so thankful Colby is feeling and sleeping better. Honestly, I only needed 1-2 more bad nights before a visit to the funny farm was going to prove necessary. Let's keep our fingers crossed for another restful night. Thank you to everyone who checked on us lately. I appreciate the calls and texts to see if Colby's sleeping was getting any better. I'm not sure the dirty/clogged vent filter is totally the answer, but it's a start. We're also giving Colby 5 mg of melatonin at night, per Cincy, to see if that helps him sleep. Just wanted to give a quick update. Now I'm off to do more open house prep work. Only 5 days away now! Wow, time flies when you're a stressed out, sleep deprived, zombie-like mama.