The first few days were good - we were slowly getting back into a rhythm. Sully had his discharge appt with his pediatrician on the 22nd and he was diagnosed with rhinovirus, again. It’s unsure if it’s the same strain from when he was diagnosed in the hospital on the 4th or if it’s a new strain, we’re going with new strain since his symptoms seem to be different this time around. Then, on the 23rd, Sully accidentally pulled his tube out so we made a quick stop to the ER - and I’m serious when I say a quick stop because we were in and out within 40 minutes! It’s gotta be a record for an ER visit. It helped that there was no one else there, but still, it was awesome. Christmas Eve was spent with my family which was great to have some normalcy again. We usually spend Christmas Day with Ryan’s family but unfortunately, Sully was very congested and we just thought it would be best to stay home; thank God for FaceTime though! We did get to open presents and still celebrate Sully’s first Christmas - AT HOME! Which was obviously fantastic, just not what we were expecting for his first Christmas. We also weren’t expecting to go back to the ER on Christmas, which we did, because Sully pulled his tube out…. Again. This time we were in and out within 70 minutes. Still not horrible. Sully was supposed to have his CT Scan of his lungs on the 26th but they had to cancel it last minute due to him having rhinovirus and them not feeling comfortable sedating him which is understandable and we want the scan done when he’s 100% healthy. On the 28th, Sully had his swallow study in which I could not attend due to testing positive for Covid and that just broke me because as I write this, I’m quarantined in the basement which may sound extreme to some but with Sully’s recent history, there’s absolutely no way we want to risk him getting it. How did I get it? No idea. But it’s unfair. I’ve had plenty of pity parties about it. So far, Ryan and Sully are both negative. Anyway, back to his swallow study. My mom was able to go in my place (thanks, Nana!) and I was on FaceTime the whole time. Ryan and I were cautiously optimistic about it in hopes that Sully would be getting his tube out and we could finally return to real normal and not have to be helicopter parents over him watching his every move so he doesn’t pull out his tube. The study revealed that although Sully’s swallowing is improving, he is still silently aspirating a bit and after talking with the speech language pathologist, it was decided that the best thing to do is to keep the tube in for another 4-6 weeks and have another follow up swallow study. You can only imagine how this made Ryan and I feel. The plan now is to decrease his thickened formula by a little bit, keep his tube feedings the same, and know that this is temporary. At this point, it’s also been decided that we meet with an ENT to confirm that nothing else is going on with his airway, windpipe, vocal cords, or anything else. There aren’t any signs showing that, but again, we want to be safe and do everything we can to make sure nothing else is wrong. We will also have outpatient speech appointments for the time being as well as meet with a dietitian. Around bedtime on the 28th, Ryan was rocking Sully and noticed he was having a bit of wheezing with his breathing. My mom was still here and between the three of us we decided it would be better to be safe than sorry and they brought Sully back to the ER to get checked out, and again, I couldn’t go which destroyed me. The luck with ER was short lived because the wait was long for them but if you know my mom, you know she’s a firecracker and she somehow worked her magic and got the 3 of them set up in a separate area and got a nurse to take vitals and do a PCR test to confirm Sully is still negative - which he is! After about an hour and half or even longer, they were brought back into a room and Sully was listened to. His lungs sounded clear and the doctor thinks it was a flare up of his rhinovirus. They deep suctioned him and gave him some steroids to help. Sully still sounds a bit congested but we are hoping he’s gotten over the peak and is FINALLY on the mend.