One Step Forward, Two Steps Back

It's been an eventful night and morning. I slept through most of the excitement but I knew it was a rough night because the nurse kept coming in 100 times and I woke up when RT came in at 4am to change Tyson's O2 mask.

Overnight Tyson's oxygen sats kept dropping so they first increased his O2 percentage from 45% to 60% and then all the way up to 65%. Even on 65% he continued to desat to 80-82 so the nurse panicked because 65% is the highest level he can have here on 7C and if he still requires more oxygen, it means he'd have to be moved to ICU. Nurse called the respiratory therapist, and at 4am the RT put him back on the high flow nasal prongs because it gives a higher flow than the face mask, hoping that would improve his sats and prevent a trip to ICU. It definitely helped to have the higher flow, because his sats improved to 85-87 but of course Tyson absolutely hates the high flow nasal prongs so he was not happy when he woke up this morning. He says the air flow is so strong he feels like he's drowning because it blows through his nose right to the back of his throat. It is also thick and heavy and sits on his upper lip, making it difficult to talk, eat, drink, because whenever he moves his mouth the nasal prongs get shoved up his nose and it's getting raw and sore. It is frustrating that Tyson can't eat with the nasal prongs, but of course we don't want a trip to ICU either. The daytime RT came in at breakfast time and put him back on the face mask because he was satting 90-91, he always sats higher when he's awake so the face mask is ok for during the day. 

The doctors just finished their morning rounds and have informed us that because Tyson hasn't clinically improved in 24 hours, he's still not eating and drinking as much as he should, and his oxygen requirements increased overnight, they have no choice but to start the IV antibiotics again for 5-7 days. They have mentioned the word ICU a couple of times and of course we want to avoid that at all costs. The doctor also admitted that the antiviral they have him on for influenza (Tamiflu) doesn't always work but it's the best option they have for viruses right now. (Side note: I always chuckle a little when people say things like "it's just a virus." This is your reminder that viruses can make people very sick, at times even sicker than bacterial infections, especially because there's not always a clear course of action.) I feel like we're playing a little bit of Russian roulette with Tyson right now. Throwing spaghetti at the wall and seeing what sticks. I am all for anything to avoid the ICU, that's not where we want to be right now.  

So now he's on an antiviral and IV antibiotics in the hopes of getting on top of this nasty infection and hopefully there is improvement soon. He's also still receiving IV fluids because his output isn't back to normal yet. So yay, sounds like we're not breaking out of here anytime soon. 

I sent an email off to his cardiac nurse practitioner to ask if his O2 parameters are accurate (here they want him above 85 at all times) but Tyson's cardiologist is out of country right now and his NP won't be in till tomorrow so she can't make a judgment call without assessing him. She says she will pop in to see him when she's in tomorrow. I am learning the disadvantages to being on 7C, the general pediatrics ward, as opposed to 4D, the cardiac ward. They aren't comfortable with his sats being 81-82 overnight because they're not usually treating children with heart issues who typically have lower sats. I don't panic at 81-82 because we've seen that a lot over the years when in the hospital. But I also do understand the seriousness of Tyson's oxygen requirements right now, so I get that they would panic when his sats drop below what they're comfortable with. 

I saw that Tyson's demeanour was off the moment he woke up this morning. He was so not impressed with having the high flow nasal prongs back on his face. He is definitely experiencing what it's like to take 1 step forward, 2 steps back. This always happens with every hospital admission, he was just too young to remember. This is more frustrating for him than me, because you could say I'm "used to it." (Even though it's been several years, it doesn't take long for it to feel like yesterday.) But it's also challenging for me, as his mom, because it's absolutely heart breaking to see him so sad and frustrated. After the team came in to tell him he's going back on IV antibiotics for 5-7 days, he just sat there in his bed, showing no expression at all but his eyes were full of tears and a heavy tear escaped and rolled down his face. I hear ya buddy, I have had my moments this morning too. 

Keep praying y'all!