Recovery Time

Here we are, day #4 post-op, and things are progressing slow and steady. Here's a little recap of how things have went: 

We were able to bust out of the PICU Wednesday afternoon, and to a regular room on the floor. Things have been stable, and we were able to get better rest in our new room, thank goodness! Clay started spiking a fever on Thursday and had a pretty crummy day that day. He wasn't tolerating anything on his tummy at all (even stomach juices) so they set the g-tube to drain and that seemed to help alot. He also had more fluid around his lungs so they were closely monitoring that and trying to get his JP chest tube to drain adequately, and taking chest x-rays to make sure his lungs aren't getting too flooded. All these issues are to be expected after a major surgery.

Friday was a much better day - he rested very well overnight and woke up looking much more perky. He even got out of the bed and walked down the hall and did great! He sat up in a chair for a good part of the day, too. As bad as it hurts him to move around, we really need him moving so that he can move fluid out of his tissues, and also help wake up his guts. We were also able to start his g-tube feedings at 20ml/hour continuous feeds, and he's tolerated that okay so far! He's had a couple of pukes after trying to give Tylenol through his g-tube, (about 14ml all at once) so we've had to resort to getting Tylenol rectally. Just another reminder that we've got to go slow with his guts.

Friday evening, he felt like playing a little Fortnite so that was a big pick-me-up! He was able to talk to one of his buddies online, and his voice just sounded a lot stronger than we've heard since surgery, so that was sooooo good to hear. 

Overnight, he seemed to have a hard time getting comfortable and wasn't able to rest too well, but in this morning's interactions with me and Daddy, his nurses and doctors - we can definitely tell he's getting some of his sass back :) little man is so funny. His urine output has also been low, despite all the IV fluids he's been getting. His body is obviously retaining most of the fluids because he's looking pretty puffy today. So during rounds today, it was decided to give some Lasix to help him move the fluid, and also some milk of magnesia to help him have a bowel movement. So we'll do that first and then if things go well, we may be able to up his feeds a little! Crossing our fingers and toes he tolerates everything today! 

Clay's getting some good pain meds through a PCA pump, and also Toradol and Tylenol every 6 hours, so thankfully his pain is being managed okay. He sure is a trooper - and just the best little patient - not afraid to speak up for what he needs! The nurse and doctors all comment on how mature he is, and he has won over more hearts, per usual. 

Even though we had some initial hopes of getting home this weekend, I'm gonna go ahead and say that's not gonna happen. We've still got a ways to go and a lot of meds and oxygen to wean off of. We're okay with hanging out, though. There's no rush and we want to make sure he's good and ready! Our surgeon is pleased with his progress and says Clay's still way ahead of where he thought he'd be at this point! 

We are so grateful for everyone's prayers and love and good vibes sent our way. 

Y'all have a good weekend, take some deep breaths, and hug your people tight. Peace and Love, dear friends!

Successful Surgery Update

Yesterday was Clay's diaphragm hernia repair #3 surgery and what an unbelievably successful day it was! We are still in shock at how smoothly things went, and are so so thankful.

In pre-op, Clay got pretty emotional and had some big tears knowing surgery would be starting soon, but after the anesthesiologist explained all the steps for sedation and process for putting in the IVs and giving the medications, he felt better. Poor guy had been worried he'd wake up in the middle of surgery and be able to see and feel everything going on. He got wheeled off to the OR around 8am in good spirits, which definitely made it easier for me and Eric. 

The waiting game is never easy, but the operating team was awesome about sending updates every hour, so that was a huge relief. We got the same message every update: they're still working, and Clay was doing fine. When it came around to the 1:30pm update, we got paged over the intercom to go to the consultation room. Blehh, those calls always make my heart drop - I never know what to expect! 

We met Dr. Draus in the consultation room and he said things went wonderfully! There was a significant amount of bowel that was up in his chest, but it came down very easily - there wasn't much adhesion or scar tissue, which is what we were most afraid of running into - thank the Lord, that was an answered prayer! Once the bowel was down, he was able to move the spleen out of the way without damage and get a good look at the hole in his diaphragm muscle. It was a 5cm x 5cm hole that had a great rim of tissue around it, so that was wonderful news for his patch work. Draus said he could have pulled the existing tissue together to close the hole, but it would put a lot of tension on the tissue and he didn't feel comfortable with that, so after consulting with other surgeons they all agreed - the best route was to place the Gortex patch. He took pictures and showed us the hole before and after the patch and it was so crazy to see. The culprit of a lot of daggone trials and tribulations over the past 9 years. The patch looked great, and Dr. Draus said he was very, very happy with his work and he didn't think he could've done a better job - I could tell he was very relieved with the outcome. BLESS THAT MAN! 

After Draus left the room, Eric and I just cried big ol tears of relief. Seriously. The amount of worry and dread I have felt over this surgery is hard to admit. Worst-case scenarios have been floating through my mind and kept me up at night ever since we learned about his recurrence. I'm still in disbelief at how smoothly things have went. And at how incredibly BRAVE and STRONG our Clay is. All I know is - the love and prayers surrounding us have truly carried us through, yet again. 

Dr. Draus stopped in yesterday evening to show us some before/after comparisons of Clay's chest xrays - all I can say is WOW. I'm sure Clay feels like a whole new man. Dr. Draus was thrilled with how much that little left lung has opened up. Answered prayers, for sure. 

After / Before

We should be moving to a room on the floor (out of ICU) this afternoon! I hope he'll be able to get a little better rest up there - I've almost forgotten how impossible it is to sleep in the PICU. Eric and I got a sleep room last night, which was nice to have an actual bed to rest in - but I still woke up at 3:30am and could not get back to sleep for worrying that Clay was missing us. So I came back over and sat with him - but I don't think he missed us at all; the drugs are helping him not worry about much right now. (Maybe I could use some too, haha.) Clay has been resting well all day, so that's what we need - Keeping him as comfortable as possible. Once we're out into a regular room, we'll start with feedings and try to slowly wake up his guts. If things continue to go well, Dr. Draus said he's hopeful we'll be going home this weekend! 

Our Clay Clay has yet again shown us how TOUGH he is! I can't thank you all enough for cheering him on. It's been so different this time around, to have a fully aware, wise little boy, with lots of questions and concerns - but it's been so nice to sit down with him and show him everyone's messages, kind words, and words of encouragement. They've meant the world to him! (And me and Eric!) 

I'll try to keep y'all posted as we go through recovery. 

Peace and Love, dear friends! Spread it around!  

CT Scan Update - Surgery Scheduled

Hey y'all - just a quick update on Clay's CT scans yesterday.

The scans definitely show lots of bowel up in the left side of his chest - like high, high..pretty much all the way up to his collar bone. When Dr. Draus was flipping through the layers of the pictures, we could see Clay's left lung under the bowel. Good news is that his left lung has some good size to it! It's just going to be a booger to get everything out of there and back down where it belongs. We scheduled surgery for September 22nd. 

Doc will have to very delicately cut away the scar tissue to loosen everything up, and try to not puncture organs and bowel while doing so. Dr. Draus said his biggest concern was the risk of bleeding, as he's maneuvering everything around, especially around the big arteries in the chest. He'll use Clay's original surgery scar, below his ribs to open him back up. Thankfully, this time around, Doc will have a lot more room to work with as Clay is a 65 lb. boy compared to the 7 lb. baby he worked on when he was first born. If there's enough diaphragm tissue there to sew together, he'll do that - but he'll likely have to place another patch. Draus said he's blocking off his schedule for the whole day and reserving the operating room just for Clay that day. I can't even imagine having his job. Can't. Even. Imagine. 😭

Clay's handling it all like a champ. Of course, he's bummed he has to have surgery - we all are. But he is such an incredibly bright and brave boy. He's full of questions, and it's all leading to a better understanding of what he was born with. He's finding comfort in that he'll get to play video games in the hospital while he recovers. 😄 We're hoping to make a little video of him explaining what's going on, so he can share with his friends. We'll count it as a virtual-learning biology lesson, lol!  

I was so nervous for the CT scan yesterday, knowing it was going to require both oral and IV contrast; I was dreading breaking the news to Clay that he'd have to have an IV. He FREAKS over needles. Since Eric had his foot surgery last Friday (he's recovering well so far, just really sore), I was dreading doing the appointment solo. So a few minutes before we left home for the appointment, Eric pulled up some videos to show Clay about the CT machine and the process for getting the contrast and we told him about the IV. Of course, Clay was super upset about it. But, I was able to talk with him the whole ride to the appointments; it helps him so much to have the knowledge of what's going on with every step. 

Thank goodness, I'm pretty sure we got the best nurses in the unit to get him prepped for the scan. They were so good with him, answering alllll of his questions, and when he asked if there was any medicine they could give him so he wouldn't feel the needle, they pulled out a can of numbing spray. That made Clay feel so much better! When it came time for the poke, he winced and had a couple of tears, but he held still and let the nurse do her thing. I almost cried, I was so relieved. He was so brave with the scan. His sense of humor had the nurses rolling and doting over him, as always. If the appointment yesterday was any indicator of how he'll do with surgery, I'd say we're golden. Clayton Cash is a TROOPER and I could not be more proud of him and his amazing SPIRIT.

As always, I am completely overwhelmed and humbled by the outpouring of love and prayers and well-wishes for our family. We are so SO thankful to have such good people cheering our boy on! I'll keep y'all updated. xoxoxo!