Tuesday, May 13, 2014

Post-Fontan Day 5

Hello, Tuesday! Let's see what you had in store for us! For starters, we were moved to the cardiac step-down unit on 8D. We still have 3 chest tubes, pacing wires, a central IV and a nasal cannula of O2. So really, we haven't made any progress today compared to yesterday.

The good news is that his drainage is continuing to decrease somewhat significantly, which is AWESOME. The less good news is that he still hasn't increased his food and fluid intake. He did have tiny bites of a few things throughout the day, and I'm hopeful they will all eventually add up to enough to ease his stomach pain and start to indicate whether or not he's going to have issues with the fat in his diet with his new circulation.

Speaking of pain, he's still only on Tylenol, but the staff here on 8D prefer to also push Oxyxodone q4. We haven't given him Oxy since the barf incident Saturday morning, but we were still able to manage his pain in the PCICU through morphine and versed. Unfortunately, those meds aren't really "allowed" in 8D. So now we're looking at gambling with his delicate belly situation by dosing some Oxy tonight around midnight. I am praying we don't start back over at zero with this causing him to vomit again.

I'm expecting a long night ahead. The nurses will be in every 2 hours to measure his chest tube output. They'll be in at midnight to push lasix and zofran via IV, and possibly the Oxy (PO). They're back again at 2am for fluid check, then 4am for Tylenol and/or more Oxy, depending on how he does. There will most likely be a chest x-ray between 4-6am as well, not to mention frequent potty trips for Chase that require at least 4 hands to make happen. This will all be pretty standard with our nights on 8D. Color me thrilled!

We're hopeful to get Chase to the children's atrium (play room) tomorrow to get him moving around and to try to pull out that stubborn fluid. We'd love to get LO up here as well to play with Chase in the atrium, but we'll see how the night goes.

Moving Up

The team (minus Chase's surgeon) rounded this morning and basically told us there's no change. :( His chest x-ray was sill a bit hazy, even though his drainage has started to decrease. They can't remove any of his 3 chest tubes because he's still not eating and we won't know if he has problems processing the fat in his foods with his new circulation until after he starts eating. He's really dragging on this and I think most of it is due to his fear of another vomiting spell. It just breaks my heart! He complains often of his tummy hurting and I know it's because he's hungry! He hasn't eaten in 5 days!!! Please pray we can get some food in that belly!

The man himself, Dr. B (Chase's surgeon) stopped by about an hour after rounds and told us he thinks it'd be best for Chase to head upstairs to 8D so we can work on getting him out of bed and mobile as that is the best way to loosen and remove the excess fluid on his lungs.

Well, what would you know? We're all packed up, have a room assignment on 8D and are awaiting transport to take us upstairs.

This is definitely a step in the right direction and a step closer to home. But it's also where the hard work really begins, for all of us but especially Chase. We're gonna have to get him up and moving around all while he has 3 tubes sticking out of his chest and a central IV sticking out of his neck and an o2 probe on his toe and biotelemetry wires measuring his heart and breathing rates. In other words, it's gonna be crazy difficult and uncomfortable for him. But it's a step in the right direction, so we're all for it!

Well it's about that time! More to come from 8D!

Post-Fontan Night 4

I was a bit worried about how tonight was gonna go down. First we lost our PCICU nurse to a floater from another unit. In pediatric cardiac intensive care, that's not what you want when it's your child's care at stake. Then, we're asked to give him his daily aspirin along with a dose of Aldactone. Keep in mind we've been trying desperately since his Oxycodone-induced vomit fest Saturday night to convince him that we were finished giving him meds that would upset his tummy or make him throw up again.

Literally less than 5 minutes later the boy was puking his guts (and meds) into a bowl. I. Felt. Horrible! I want him to trust us but he had to have thought we were big fat liars! Luckily it was all contained this time and he seemed to feel better after. But it was so defeating in that we had spent hours trying to get him to take the tiniest sip of water or juice and eat a minuscule corner of a cracker, only to have what little was on its way to his tummy end up in a barf bowl. Fail!

He seemed extra sweaty/clammy all afternoon and I decided to give him a "bath" with the hope that it would help him settle down and sleep for a bit, as he hadn't slept much more than a few minutes here and there all day. He wasn't a big fan of it, but was SUCH a trooper! I was able to get him cleaned up, slathered in some baby lotion and even washed (most of) his hair with a no-rinse shampoo I picked up at Sally Beauty Supply last week. Then it was into his Toy Story hospital gown and socks, a fresh sheet and blanket on his bed, and a few minutes of Netflix on the iPad.

Not long after, he started to nod off into slumberland. Thank You, Lord, for hearing our prayer! He slept for a good hour -- maybe more -- before waking up around 1 AM for a potty break. We got him situated on the potty chair and he not only peed but also had his first poopy since his surgery last Friday!!! This is a huge milestone and means we won't need to give meds to help with this. Way to go, Chase!!!

Once he was situated back in his bed, he was able to fall back asleep relatively quickly and is now getting more much-needed rest!

He had his chest x-ray at 2:15 AM and then the nurse took his BP and stripped his chest tubes before I got him tucked back in with the hope that he'd get a few more hours of solid rest. And that's exactly what he did! It's now 5:30 AM and we just finished another BP and chest tube strip. A half-dose of morphine is on the way since he hasn't had any pain meds for several hours, so again I'm hopeful that he'll grab a few more hours of much-needed rest.

The docs will round in about an hour or so, and I'll be curios to hear their thoughts for today.

I should take a moment to mention what troopers LO and E have been through all of this past week. Let's face it, LO is getting lots of quality time with THREE grandparents. What's not to like about that!? And E... well, let's just say that as long as there is food involved -- and lots of it -- he's just gonna be a happy camper. Throw in a nap or two, and he's golden! I honestly am so thankful for my in-laws for taking such good care of my littles. It helps me to focus on Chase's care when I know the other two are so well loved and cared for.

But on the other hand, it's so hard to be away from them! I've been spending every night at the hospital, only to come home mid-morning, visit with the kids for a few short moments, take a solid nap, shower, then head back to the hospital by late afternoon and repeat! I just wish I could clone myself so I didn't feel like a horrible mommy for neglecting my kids. I know they're getting loved on, but I just miss then terribly! Praying for some progress in getting us home!