Hangin' in There

It's been a frustrating and irritating and tiring and exhausting and difficult day. We started out by having his chest tube removed, which was fantastic! That only left us with ONE minor hurdle to overcome... oxygen support. At least I thought it would be minor.

He's been hanging out with decent saturation while on a whopping 1/8 Liter of oxygen. That's about 22% oxygen. To put it in perspective, the room air that we all breathe is 21% oxygen. Ya, just one tiny little percentage point different. But apparently, Chase really likes that 1%.

We've tried weaning him completely off oxygen twice today. Both times his sats would dip into the mid- to upper-60s. And both times he ended up back on his whopping 1/8 Liter of oxygen. Talk about frustrating.

And let's top it off with the fact that we've been third in line for a bed on 7C all day. One patient went up around noon. The next one, not until 7:30 pm. So that means that we're still hanging out in the PCICU, unable to go upstairs and unable to bring our boy home where he belongs.

It's been a draining few days for me both physically and emotionally. It kills me to leave my baby at the hospital to go home each night, not knowing if he's being cared for the way we want him to be cared for. It's tough not spending any time with my sweet LO, although she's none the wiser since she's being spoiled 24/7 by her dear Gramma and Pa Pa (for which we are eternally grateful!). I just want to make some progress toward the finish line. I feel like we're stuck on the side of the road. I guess it might be because we've been here for almost two weeks since we had the cath procedure before the Glenn. I know it's ridiculous to feel this way since so many families are here for such a long time (think Baby A who just went to 7C this morning after 5 continuous months here). But for me, it's hard, regardless of the length of time because no one wants to have their child be in a hospital, no one wants to be away from their other child. I want us all together again and that truly is right around the corner. I guess the monotony of this leg of the race is getting to me today.

Update: It's 11:58pm and we're heading out of the PCICU. Chase has been off oxygen again, this time since around 10pm. He's holding his own. Let's hope and pray he makes it through the night without help keeping his sats up. The good thing is his nurse tonight is known as "The Weaner." Apparetly she's known for getting her patients to wean off whatever they need to. Make her proud, little guy!! :)

Update: it's 4:17am and hubs just called up to the PCICU. Apparently our boy dipped into the low 60s while sleeping and needed the oxygen turned back on. I don't understand how his sats were great (88ish) before the cath and Glenn, and so unstable now. They opened the coarctation in his aorta, patched (widened) his pulmonary arteries and increased the flow of oxygenated blood to his upper body. How is it doing these things made his sats worse and not better??!!!

Hopefully the morning will bring progress our way! And some explanations, too!

Here's a pic from one of our brief moments without o2:



And o2 back on again, sort of:




Posted from my iPhone