Friday, December 2, 2022

2022 Update

Here we are, over two years since the last update on Clay. No news is good news, right? He bounced back from that last surgery in 2020 like a champ, and aside from trying to dodge the crazy COVID bug for the past two years, our lives have been relatively quite and normal, thank God!

Oh yeah, except we did add another little bub to the family! Mr. Miles Robin was born last September 2021 and has just completed our family in a way I couldn't have ever imagined. There's 10 years between him and Clay, and 8 years between him and Oaklee - it's been the sweetest thing watching them all dote and love on him. Clay has been wayyyy more involved and loving to Miles than he ever was with little sis, haha. Him and Oak still fight like cats and dogs. 

Clay did have a really nasty respiratory bug back at the end of May 2022, that put him in the hospital for a few days. He was diagnosed with bacterial pneumonia, and given antibiotics, extra oxygen and lots of nebulizers and inhalers to help him get over it. It hit him crazy fast and was very scary to see. The night we decided to take him into the ER, he was having coughing fits and oxygen levels were into the 70s. We'd never been in that situation and not had back-up oxygen to help, so it was super scary. He was scared, too. I'll never forget him saying to me the morning we took him to the ER - through tears, "mom, you know how some people only live to be a young age, that's what I'm afraid of." Y'all. It's heartbreaking that a child even has to think those kinds of thoughts when they're sick! He was retracting and working so hard to breathe, I was afraid he was going to have to be intubated because he was struggling so much. Looking at the x-rays, I also feared reherniation. His little left lung was so hazy & cloudy, and I'm pretty sure I could see bowel loops up high. But our surgeon tried to reassure us it was just his floppy diaphragm, which sits much higher on the left side. Still, the thoughts of reherniation had been in the back of my mind ever since.

It took a couple of weeks, but he bounced back from that illness pretty well. We went for a follow up with the surgery team at UK in August, and while his left lung had cleared up from the pneumonia, the x-rays were inconclusive as to whether or not his diaphragm is still intact. The radiologist was concerned that bowels were up, but the surgeon wasn't so sure based on past x-ray images. Because Clay has bounced back to "normal" after his illness, the surgeon recommended that there isn't much rush to do a CT scan or other tests and recommended to follow back up with them in 6 months. 

After that appointment, and taking in all the "what-ifs" - again - Eric and I decided we wanted to reach out for a second opinion, especially while Clay was doing so well, and his case isn't emergent. So, I contacted the CDH specialty clinic at John Hopkins All Children's Hospital, in St. Petersburg, Florida. We wanted to meet with the highly-renowned Dr. Kays & his team, who are truly beacons of light within the CDH community. People travel to this facility from around the world because it has such a positive survival rate, and it's a center that ONLY treats patients with Congenital Diaphragmatic Hernias. That in itself is such a relief to me. CDH is such a complicated diagnosis, and it goes wayyyyy beyond birth. Making this appointment had been something I'd contemplated for years. 

I guess I should also add in - our longtime trusted surgeon, Dr. Draus, recently left UK for a job in another state. We were all very sad at that news because he's literally been the one to do every surgery and procedure Clay's had done in all of his 10 years of life. Now that we're seeing a new surgeon at UK, it was just like - why are we sticking around here and not seeking out more specialized care for Clay? He surely deserves it. 

We went down for Clay's appointment at John Hopkins All Children's hospital in October. We were able to find round-trip flights for our whole family plus my mom and dad, for less than $800 total! So we took the opportunity for the kids to experience their first flights. Our family was able to stay in the Ronald McDonald house right next to the hospital for the 3 nights, while my mom and dad got a small condo right on St. Pete Beach. It was so nice to have them tag along, because Eric and I were both able to go to Clay's appointments while the other two kids stayed with Nan & Pops. Plus, we were able to enjoy a few hours of beach time with them. 

Clay had his CT scan done, and then we consulted with Dr. Kays and the CDH team afterwards. When I say I was relieved, I truly don't know how to describe the feeling of "seen-ness" I had during this visit for Clay. Dr. Kays looked at him not only from a surgeon standpoint, but also looked at his nutrition, his physical growth, cardiology reports, cognitive abilities, it was just very much the "whole picture". 

Then he went through each layer of his CT scan with us, and was very plain to see lots of bowel and other organs up in the left side of his chest. We could see his left lung being smooshed against the front of his chest, with the organs coming up through the back. It was very interesting to see other anomalies in his anatomy, like the way his aorta wraps around the opposite side of his esophagus, and his heart position, and even how large his stomach appeared to be (he'd just been fed some of his g-tube blends, so I guess he was really full). Dr. Kays was very thorough in his checkup and even discovered another issue not even on our radar. 

It was hard to not breakdown in the middle of the appointment, just full of regret that we'd not been there sooner. In all honesty, we'd considered being seen by this team while I was pregnant with Clay 11 years ago, but chose to stick close to home so Eric could still be close to work and to help financially. It's hard for me to not wonder how different his journey may have been if we would've. But, as we've said numerous times throughout the years - everything happens for a reason. And I feel confident we're in the right place now. 

Surgery will be needed yet again, for the 4th time. Dr. Kays said it was not emergent, and the timing would ultimately be up to us. He was adamant that he would be starting from scratch with his diaphragm patch-work. No more plugging holes, and his experience of performing over 600 diaphragmatic hernia surgeries will hopefully be on our side as he tries to find the best tissue to adhere the Gortex patch to.

I was in contact with the team earlier this week and we're hoping to get the surgery scheduled during the beginning of June 2023. That way he can finish out his 5th grade year normally. Y'all say a prayer for no emergencies along the way, and that we can make it to the surgery date in good shape. It makes my stomach turn every time I think about him having to go through this YET AGAIN. And this time will be so many more levels of new-ness and anxieties as we will be relocating to Florida for at least a couple of weeks. Lots of details to work out still, but I'm hopeful we'll be able to stay in the Ronald McDonald house again. 

I'm hoping to get Clay referred to the Make-A-Wish foundation so we can plan something wonderful for him to look forward to prior to his surgery. Clay deserves everything wonderful. He is truly a great kid, and makes such an impression on everyone he meets - whether they know his whole story or not. He's such a bright child, with an infectious smile and laugh, and a healthy dose of sarcasm and funny banter. I always feel so lucky to be his Momma. 

Y'all keep us all in your prayers as we get the details worked out and move forward. And thank you for reading this big, long update! Peace & love & Merry Christmas, yall! 

Oaklee, Miles and Clay on St. Pete Beach

Clay's first flight! He loved it. 

Thursday, October 1, 2020

Home Sweet Home!

Hello from the hills! 

We were discharged from the hospital on Tuesday the 29th - one full week from surgery day, and Clay is doing so great. 

While we were in the hospital, we had our hopes up of being able to bust out of there on Monday - but we had a hold-up with getting our extra equipment ready to take home, so we had to wait til Tuesday. We came home with an oxygen concentrator, and a feeding pump to run his food through at a more continuous rate, until we can work back up to the bolus feeds he was getting prior to surgery. 

Clay is still 100% g-tube fed, even before surgery - it's just something we've gotten used to doing after nearly 9 years, but we are still holding on to hope that one day he'll eat by mouth! He's came a loooong way, and we are currently doing feeding therapy every 2 weeks via Zoom, and his therapist is very encouraging that he's making progress and will get there eventually. His interest with eating by mouth is hit or miss, but he definitely has his preferences - roasted chicken and Fruit Loops were his favorites before surgery. Maybe he'll feel like trying some more food by mouth soon, and maybe it will feel easier to swallow now that things are where they're supposed to be!

As far as the extra oxygen goes, while we were in the hospital Clay was still battling the fluid retention, especially in the space around that little lung - so he ended up getting another dose of Lasix on Monday, and that helped tremendously. As he peed off all that extra fluid, his chest x-rays started looking much better and he started having more breath sounds on the left side when listening with the stethoscope - all good things! By the time we came home on Tuesday, he was holding his oxygen levels up just fine on room-air! It's still a peace of mind to have the equipment at home, just in case. We keep the pulse-ox on him at night to monitor his levels. 

Clay's done wonderfully since we've been home. It was so good for him - for both his mobility and his spirits to be in his own space. In the hospital, he was really getting cranky about getting out of the bed and walking - I know he was bound to be in pain from the surgery, but also just the hassle of walking with the IV/feeding tubes was discouraging - and the lack of stimulating environment. Since we've been home, he's gotten around the house with not much problem! Sitting and lying in different positions have been easier as well. You can tell he's sore, but definitely on the mend. We have a follow-up appointment with Dr. Draus on October 12. 

Coming home with all the boxes of medical supplies and the equipment was a major flashback from Clay's early days. When unloading and trying to make room for all the new goods, I came across boxes and totes full of things I'd almost forgotten about - trach cleaning supplies, Passy muir valves, his little ankle braces for physical therapy, an ambu bag, so many tubes and much stuff that was such a part of our everyday life for so long. It just brought me to tears thinking about how far our boy has come. 

He is one strong dude and continually leaves me amazed at what a person can endure. We're still wondering how long his guts were up in his chest, and I still have a hard time believing how this whole reherniation was caught in the first place - It feels like divine intervention. We're all so thankful at how smoothly this operation went and how well he's doing with recovery. This whole experience has led to a better understanding for him - it's kind of like he's able to claim ownership of his life story now. His story is one of struggle, but one of overwhelming triumph too. 

We are so, so grateful for all the thoughts and prayers and good vibes that have been poured over our family. The gift cards, food and well wishes have been amazing. In today's current climate, it's hard to scroll through social media and feel positive - but when using it to send these updates and read the comments with our boy, it's truly been a light for our family the past few weeks. We love you all and appreciate you so much. ❤️ Peace and love, dear friends. xoxoxo! 

Saturday, September 26, 2020

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!

Wednesday, September 23, 2020

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!  

Tuesday, September 1, 2020

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! 

Wednesday, August 19, 2020

2020 is weird.

Oh hey guys..It’s been a while since I’ve used this space for an update on Clay. Like almost 5 years? Crazy. 

Things have been pretty uneventful, thankfully. Clay’s growing and getting smarter and stronger all the time. He’ll be turning NINE years old in two months! We’ve been pretty cautious with concerns about COVID-19, and I’d be lying if I said I haven’t worried about the “what-ifs” if Clay were to catch the virus. With talk of the use of ventilators and ECMO machines to help COVID patients breathe, it all sounds too familiar and we’d rather not repeat that. 

Well, the news we’ve gotten over the past week has not helped my anxieties. What an emotional rollercoaster it’s been..

We went for our 6 month check-up at Shriner’s last week, where we’ve been keeping an eye on Clay’s scoliosis. When the doc showed me the X-rays, I asked if I could take a picture because his anatomy just looks so unbelievably wild. Later that evening, I posted the pic of his X-ray on my Instagram stories, where one of Clay’s former surgeons seen it and sent me a message and said it looked to him like he’d “recurred”. Recurrence or reherniation means the hole in his diaphragm (that he had at birth) has opened up again and his intestines are back up in his chest. 

Here’s the pic for reference: the top one is Clay’s and the bottom is one of a “normal” chest. Wild! 

So on Monday, we had another round of chest X-rays and met with our old friend, Dr. Draus. He said he could see a considerable amount of bowel in the chest, which he said was probably compressing his left lung entirely. They could hear bowel sounds in his chest with the stethoscope. Dang.

Even though he has been doing well and this is something that’s probably happened gradually over time, we discussed the reality that another extensive repair surgery will be needed to put everything back in place. Dr. Draus said he’d have to block off an entire day to spend operating on Clay because, as always, who knows what they’ll find when they get in there. So we tentatively set a surgery date around the end of September. 

We all went home and processed the news and cried, and processed and cried some more. We talked to Clay about everything and after the initial shock and anxieties about surgery, he seems to understand what’s going on and how it could potentially help him in the long run. I’m thankful Eric was able to go with us to that appointment because daddy always knows the best way to cheer him up...On the way home, he made a detour by Game Stop to let him pick out a new controller for his Nintendo and some V-bucks for Fortnite. We told him he’d get all the Fortnite playing time he could want during his recovery and hospital stay so that made things better. That little pick-me-up did the trick for Clay’s spirits 😊

Well, then yesterday morning I get a call from Dr. Draus and he said he had been reviewing Clay’s X-ray again with a radiologist and they were questioning whether his diaphragm has actually recurred; It could be that his left lung is just so small it’s leaving a lot of extra room for things to shift upward and his diaphragm may still be intact, just really “floppy”. So, the latest recommendation is that he will have a CT scan done in the next couple of weeks and we will get better imaging to see what’s really going on in there. 


The good news is that Clay is doing wonderfully and hasn’t shown symptoms of feeling unwell. His breathing is normal (for him), his digestion is regular, we’ve had a recent cardiology visit and his heart is working fine. So in either scenario his body is compensating well. If his bowel is up in his chest and we have to have surgery, we hope that will allow his left lung open up more and will help his breathing so that he won’t get so winded with physical activity. But we’re really hoping we can avoid surgery if possible. 

If his diaphragm is still intact and the bowels have shifted upward because of the extra space his little left lung leaves, that concerns me because of the reality that that *can’t* be fixed. It doesn’t leave much “reserve”, especially, if he were to catch the virus. It’s just truly amazing that he does so well with what he’s got going on on the inside. 

On top of all this, Eric goes for a pretty intensive foot repair surgery next Friday, August 28th, so he will be down and out for the next few weeks with that. 2020 is just weird. 

Y’all just say a prayer for our miracle man and that we get some definitive answers. Our CT scan is scheduled for Monday, August 31, then we will go from there. I’ll try to keep ya updated! 

Love y’all! 

Wednesday, November 4, 2015

Clay goes to school!

It's been a year...yet again...since I've sat down to update this blog. We now have a little 4 year old man with NO trach, a head full of beautiful hair, and all kinds of spunk.

He has progressed so much since his trach decannulation in June. He talks and talks and talks all. the. time. Lol. He just seems to have so much more's great. We decided to wait and see if his trach stoma would close up on its own after didnt.. So we had the revision done about a month ago and it's healed up so nicely!  Now we are officially DONE with the trach saga. It's crazy ain't it? How something can be such an integral part of every day life but after we got rid of the ol' thing we've hardly thought about trach changes, trach care or suction machines since. HALLELUJAH!

Now we're on to big boy SCHOOL! Omg..I'm really having a hard time processing this. His first day is tomorrow! We're starting out slowly..2 hours, 2 times a week.. He's a bit anxious about it but we've really been talking it up and I know he will love it once he gives it a chance. I really feel like he needs the social interaction and the time away from me to help build up his confidence and independence even more. He will do great, I know.

One thing that does worry me is the germs and the crud-catching that comes along with school. A regular ol' cold for a regular kiddo can really take a toll on Claybug..we found that out at the beginning of the year when he caught RSV and we spent a couple of weeks in the hospital and back on the ventilator. I really, realllllly hope nothing hits him that hard this's a different ballgame without the trach and the "easy" access for extra help. Fingers crossed we can sail through the season unscathed.

I feel like there's so much more to update on but that's all I'm getting to tonight. Gotta get ready for our big day tomorrow!!! 

Peace and love, dear friends!