There's really not a whole lot to update which is good!
Connor has been recovering nicely. Today we have started to wean him off his morphine and he's now getting some oxycontin and Tylenol to manage his pain.
Matt and I took a class this morning about g-tube care and what we can expect. We have been working on being as hands on as possible with the tube. So far we've done two feeds and meds all by ourselves. We also just finished giving him his first sponge bath and cleaning the site.
Connor is now up to his goal feeds which is 150 mL (or 5 ounces) 6 times a day for a total of 30 ounces each day.
Here are some pictures of his progress! Word is we may be going home tomorrow...exciting stuff! :)
Fact.
Started off with very slow amounts of Pedialyte!
Can you tell I'm eating right now?!
It was REALLY tough for him to not be on his tummy!
Something in my mouth feels different...
Such a sweet little toothless grin!
I got my stitches out today!
Ha, look at that hand!
We also moved rooms to a bigger room (hallelujah!). And because I have way too much time on my hands...
Hopefully the next few days will be a little uneventful, but here's an update on our day.
Connor got an okay night's sleep last night considering there was a kid screaming all night next to us (Matt and I got a little over 2 hours sleep each...yikes!)
Can you tell how tired we are here?!
Despite not being able to eat this morning, Connor was a great patient! All of the pent up stress and emotions were definitely prevalent, especially once we moved to the OR Holding room. I was really struggling to keep it together. Especially seeing this sweet face:
We were told the earliest they would be done would be noon since they were taking him back at 8:00. We got an update around 9:00 that they got started around 8:30 and then around 10:15 we got a call from the surgeon. Since Matt was talking on the phone, my mind was racing...Why is the surgeon calling us? Is something wrong? Did they find something bad out? Turns out...he was DONE with his part. He was asking if we wanted cardiology to get in and do an echocardiogram on him since he finished so quickly. Luckily, cardio was able to do it.
After a while, we checked the surgery board and noticed Connor's number went from the OR to the Recovery Room. I was so relieved it felt like a huge weight had lifted, but it took FOREVER to finally get the call to go back and that uneasy feeling kept creeping in. Finally, we were able to go see our sweet, sweet boy.
Connor had just gotten some morphine, but a dose of Daddy was also necessary!
After about 30 minutes in the Recovery Room they brought us back to where we stayed last night (no PICU...yay!).
Connor has spent most of the day resting,
Medicine time! This isn't even including the 2 meds he already got in his IV. We actually used his g-tube for the first time with these meds! And when I say we, I mean the nurse with us watching and asking her a bazillion questions ;)
I was even able to get his first smile! It was pretty faint, but it was there! This evening, Connor has shocked us with his spunkiness. He is dying to roll over onto his belly, but can't until at least tomorrow.
Here are some videos from this afternoon/evening. The second one is not the best because I'm moving around so much, but it's hard to keep him from rolling, making sure his drainage basin thingy doesn't tip over, etc.
We again cannot thank everyone enough for your kind thoughts and prayers. Keep 'em coming because the next few days may be a challenge!
So tomorrow is a long awaited, BIG day for us. It entails the "s" word. That's right...surgery.
So in anticipation of the 7th attempt, Connor has spent the past week quarantined at home. He did have a few visitors, like his lovely therapists, which he greatly appreciated. Connor loves his daycare friends and has missed them a lot. Mommy just hasn't been cutting it!
So, here are some videos of our sweet guy with his therapists.
Ms. Stacy (his speech therapist) came by and worked on lots of really good things. I actually videoed so I would know what to work on with Connor. We were really proud of Connor at the end of the video if you couldn't tell!
I love this video because Connor gets SUCH a good grip on the light bulb/ball. While Connor's grip is really strong, he really struggles to grab on to things so this was really exciting!
See above!
So, not videos but he worked so hard for Mrs. Denise his physical therapist!
These are pretty old, but I think pretty funny. Mrs. Heather, his occupational therapist, gave us these techniques to do because baths have been rough around here lately!
So with Daddy, Connor's brush therapy goes pretty smoothly. He's a good boy and super sweet!
And with Mommy, someone is a huge wiggle worm! He's so nutty!
And now, just some fun videos of Connor playing.
So feel free to bookmark this link if you ever need a pick me up. I know after the fussy boy I've had off and on this past week, these videos are awesome!
