Slowww recovery days and a trip back to Florida..

Hey y'all...just wanted to give an update on Clay, as we are a little over two weeks post-op now. We were discharged from the hospital exactly one week after surgery, on Friday, June 16th. So, we've been home for a week and a half now! We were discharged around noon, headed straight towards I-75 North out of Tampa and made the 13 hour drive home--arriving home around 2am. The kids were such troopers. I was worried about Clay's comfort on the way home, but he was able to stretch out and get a few good naps in along the way. 

 Since we've been home, Clay has done okay with his recovery. Good, not great. I'd be lying if I said it's been smooth sailing and he's not been worrying me. His belly has been giving him a lot of pain ever since surgery. Even on the Thursday before we were discharged from the hospital, I asked them to do an abdominal x-ray, just to be sure everything looked okay with his intestines and there weren't any blockages or obstructions. Things looked okay then, thankfully, so I felt okay with bringing him on home. Once we got home, I knew he'd get better rest and have more comfort to heal up faster. 

Clay's belly has continued to cramp and ache and bloat and just been so uncomfortable since being home. He's not felt like doing anything except lay around, and his color in his face has been so pale. It's been pitiful and disheartening, but I've tried to keep telling him (and myself) that everything will line out in time. He had a lot of anesthesia during the 13 hour surgery, and they rearranged a lot of organs! Not to mention, his diaphragm is 4 inches lower than previous--which does allow more room for his lungs, but is also compressing his abdominal organs more than he's ever had in his life!

But last Wednesday, Clay really gave me a good scare. We were getting ready to go to our local pediatrician clinic for a check-up, when he got white as a sheet, broke out into a cold and clammy sweat, he said his vision was blurry and he nearly passed out. I was about to call an ambulance! But I checked his oxygen levels and they were fine, and he started to come to a little more, so we just hopped in the car and headed to town. By the time we got to the clinic, he was looking a little better. So we went on with our appointment and I also called the CDH team at JHACH to get their advice on what to do. They recommended taking him into the ER for blood work and x-rays, so we headed to Marcum and Wallace. We spent all day there getting checked out, blood work, chest & abdominal x-rays, and also ended up getting a CT scan done to rule out infections or obstructions. Thank God, everything came back okay. The ER doctor consulted with Dr. Kays directly a few times, so that was relieving to us as well. They said there was some impaction in his bowels and recommended we give some mild laxatives to help. His white blood cell count was also elevated at 28,000, but they said it was likely elevated from post-op and the foreign object (gortex patch), and we weren't given any antibiotics or anything. 

We've really been trying to get him hydrated and get him good nutrition through his g-tube, even though his belly seems to ache more after a feeding. I've been giving him prune juice to help with constipation, and I've also cooked up some pork liver to add into his g-tube blends to give him extra dose of iron, in case he's slightly anemic and maybe that's contributing to his fatigue and paleness. We left JHACH with the plan for decreasing his g-tube feedings throughout the day and only giving them in the evening, as a way to encourage him to follow his hunger cues and internal desire to try to eat by mouth. Which sounds great in theory! But actually putting it into action is a different ballgame. I guess I'm too much of a softie or something, but I could tell the plan was stressing Clay OUT! For one, the sensations of chewing and swallowing are so foreign to him, and often makes him feel gaggy. Trying to do that after a major surgery, when he hasn't fully healed up and doesn't feel the best on top of everything just didn't feel like good timing. So, we've put that plan on the back-burner, and are currently just working towards getting his g-tube feedings back up to the volume they were prior to surgery. Which has proven to be quite difficult too. Prior to surgery, we were feeding him about 16oz of food at a time, 4 times a day. We've had to slow that wayyyy down over the past couple of weeks, but he's currently up to about 8oz at a time, and we're doing that about 6 times a day. 

The end of last week and over the weekend have continued to be about the same--at times Clay nearly doubles-over in pain from his belly. His color has continued to be pale, and he just feels all-around blahh. Yesterday, we had another follow-up with the NP at Children's Clinic, and another phone call with our surgeon, and we made the decision to take Clay back down to St. Pete. to have more bloodwork and x-rays done there - so Dr. Kays can see him in clinic, in person. It would sure ease our minds a lot! His appointment is this Thursday, June 29th and this time, just Eric and Clay will be flying down by themselves, and they'll FaceTime me during the appointment. I'm praying and believing every little thing is gonna be alright. I just want our boy to heal up and get better! I'm praying TIME is all we need. Please keep us in your thoughts and prayers - for safe travels for them, and for good results at the appointment. We appreciate y'all so much!

Clay at the ER on Wednesday, poor bud is tired of hospitals and needles!

Post-Surgery Update

Here we are — day three post-op, and Clay is doing very well, all things considered. His recovery this time around seems to be going a little more smooth compared to past surgeries… or maybe we’re getting used to the process and know what to expect? An unfortunate likelihood, I suppose. But we are hoping, praying, knocking on wood, and crossing all of our fingers and toes that this is the LAST diaphragm repair surgery Clay ever has to have! Please Lord, Let it be! 

We are still shaking our heads and in disbelief that Clay spent 13 hours in the operating room on Friday. We had to be at the hospital for the pre-op process at 5:30am, then we didn't get back to see Clay post-operatively til 10pm! So it was an incredibly long day. Thankfully, we were updated via text almost every hour with the same kind of brief message - the procedure was still in progress and Clay was doing well. As the day wore on, I was wishing those texts were a little more descriptive though! The doc did consult with us face-to-face a couple of times throughout, so that was also a relief. 

Dr. Kays was really pleased with the end results, but I reckon it took a lot of pondering over his anatomy to even get to the point to place the patch. His exact words were - it’s a mess in there. 😅 He found more native diaphragm muscle that had not been used in other repairs, so he was glad for that, but that native muscle was about 4 inches lower than the patches that were placed before. CT scans and ultrasounds from when we were here in October had pin-pointed his left kidney as being sandwiched up next to his spleen, which was all positioned in the way of where he wanted to place the new patch... So we spent the majority of the day thinking he was going to have to relocate the kidney and risk the likelihood of injury and/or losing the kidney all together during the move. But after a lot of searching and pondering, they found his actual left kidney in his belly, surrounded by intestines, and it was so hidden that it hadn’t actually shown up on previous scans. What they thought was kidney was actually an extra lobe or “cleft” in his spleen, and so once he realized that, Dr. Kays was able to move all of the organs down without a problem. He did cut away all of the old patch and started totally from scratch. 

The gortex patch he put in place covers the entire left side, and is attached to the rim of his existing diaphragm muscle, and then he had to sew the patch to his ribs on the backside of his diaphragm because there was no muscle tissue there. The doctor thinks he got a great patch sewn in all the way around though, and with it being 4" lower than any previous repairs, it allows a lot more room for his left lung to expand too! Even though it's a patch and obviously not a working diaphragm, it's still a barrier and in the proper placement, and should do better than he's ever had before!

After surgery, Clay was sent straight up to the CDH floor—-where everything runs like a well-oiled machine. It’s been so wild to be in such a specialized unit, and I've been so emotional about it. I feel like we definitely made the best choice to bring him down here and I’m so glad we did. I cannot express how grateful I am to the whole OR team for their diligence and dedication to seeing that Clay’s repair was a success. I can’t imagine what it’s like to do their job! But I am so so thankful, especially to Dr. Kays. He has repaired over 600 babies and kiddos with CDH and has amazing statistics for their success. That’s exactly why we brought Clay here - to a hospital that has so much experience witb CDH! Overall, Clay has had a really great first few days of recovery. Hopefully it continues! He will have his chest tube pulled tomorrow, which has been draining fluid/blood from around his lung. Hopefully tomorrow we can start a little bit of food through his g-tube, and get him up and walking the halls a lot more too! He is so strong and brave, I am always amazed by him.

As always, thank you all for your thoughts and prayers! I always read the comments on Facebook with Clay and I know it brightens his spirit so much to know how many cheerleaders he has. Peace and love to all our friends! We love you all!

CDH Reherniation Surgery #4

Tomorrow is the big day - Clay will be going into surgery at 7am tomorrow, Friday, June 9th, with Dr. Kays at the Johns Hopkins All Children's Hospital in St. Pete, FL. We have already made our way down to Florida and have been able to enjoy a few days of fun before the not-so-fun surgery and recovery time. 

Clay has been in good morale overall, just nervous to be under the care of a new doctor that he doesn't know as well. He really amazes me with how well he's handled this looming date of surgery. I know we'll all be a ball full of nerves today though, as we move into a room at the Ronald McDonald House - it's all feeling more real. We are asking for all your good thoughts and prayers for Clay, his doctors and care team, and all of us family too, as we get him patched back up again. 

Pray that the doc is able to find the best tissue to adhere the gortex patch to, so that he will not have another reherniation! Pray that his organs and bowels that are being moved around are shifted safely and without obstruction or injury. Pray that Clay's recovery is quick and goes smoothly, and that his mind is at ease. We were told to expect to stay here for at least 2 1/2 weeks for surgery and recovery. We are a family of home-bodies so we're all already homesick lol. I am proud of us though, for taking the plunge and making this trip happen, even when it's not easy to be away from comforts of home, or for Eric to be away from work for so long. I pray we've made the right decision and it will all be worth it for Clay to be seen by the CDH specialty team and that this is exactly what he needs to help him live his most fullest and healthiest life. 

Thank y'all, as always, for loving and praying and lifting up our family. We always appreciate you all! I'll update again after surgery. Peace and love, dear friends!

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. 

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 syringes...so 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! 

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! 

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. 

Whew. 

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! 

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 confidence...it's great. We decided to wait and see if his trach stoma would close up on its own after decannulation...it 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 things..like 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 year..it'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!

Happy 3rd Birthday, Clay!

Clay-bug is three years old! My goodness, where does time go?!

So much great progression in the past year. Clay did lots of catching up and growing and learning and exploring this year.
-First of all...We had NO major illnesses or surgeries or hospital stays! NONE! Praise the Lord.
-He's up to 32 lbs now, which is almost 10 lbs more than he weighed last year! He's 3 feet tall, too. He just looks so grown up these days.

Plugging his trach to say, "Cheeeese" :)

-Clay started walking all on his own in March and continues to get so much stronger (and confident!). I'm just so proud of him.

-We took a family vacation in May to Tennessee, then a week later we left to visit family in Cape Cod, then we stopped by Nelsonville Music Festival on our way back home. It was such a great trip! Clay had a blast getting to see & do so many new things & we he got to meet new family... he still talks about riding the choo-choo at Dollywood...and he talks about Nanny, and the ocean and Sandy's big dog, and his cousin Le-bi (Levi), lol. We had a great time.

One of Clay's favorite things: riding the Trolly in Tennesee with Nan & Papaw

On the beach in Cape Cod (it was cold!)

 -We played lots and lots of volleyball this summer, and Clay loooooved that too. Our friends are great entertainment and Clay will keep them busy fetching balls as long as they are willing, lol! He'll wear ya out with his ball-playing endurance. He now knows how to bump, set, hit and serve a volleyball though. I'm telling ya'll...he's a natural.

Learning mad volleyball skillz from this crazy bunch!

 -He loves going to Story Hour at the Library...I think he likes the tradition of going to play at the park afterwards even better :) He LOVES the swing!

Playing at the Library. Puzzles suited him just fine until he spotted the kid's computer!

-He talks SOOOO well. His vocabulary is ever-expanding and he asks questions alllllll the time. Mommy, why? Mommy, what you do-nin? Mommy, where you go-nin? Mommy, mom, momma, mommy, mom! Hahaha. He just amazes me with how much he understands and observes and REMEMBERS! Kid's got the memory of an elephant (is that how that saying goes?)... Kinda scary, really..lol!

-Here's a big life changer: Clay is now a big brother!!! Miss Oaklee Mae was born on August 26th. She is perfect and he is quite proud :) He likes to show her off to everyone we meet...I think he likes that it takes some attention off of him, lol. He has done so well with the new addition to the family. I was afraid he'd be jealous and extra-clingy to me, but if anything it's made him more independent.
He'll help me out by getting diapers and throwing them away in the trash can. He also makes sure her swing is always swinging and playing music while she's in there...He doesn't want to hold her or love on her but I do catch him rubbing on her head and checking her out a little more closely when he thinks I'm not looking. ;)

-Big boy is totally potty trained and has been for a while now. He's starting to want to pee standing up though, so it's getting a little messy but he does really well for the most part. He can now pull his own pants up and down so that's a big thing for him, too! 
 -Clay looooooves to go to Nan & Papaw's house and is a-ok with me leaving him there to play while I go to the store or if me & Eric go on a date. He even stayed all night with them a few weekends ago and didn't shed one tear! It's no wonder though, they way they spoil that boy! He's ruint, I tell ya.
-Most of his days spent around the house he's either watching Curious George, asking to watch George, or talking about the things that George does..lol! He is obsessed. The show is quite adorable though. I learn things from watching it, so I don't feel quite as guilty about letting it occupy him...okay, I do feel guilty...but it helps me out so much!

It's just amazing how our little miracle man is developing. Someone ran into us out in town the other day and was amazed with how well he's doing...they said, "well, he's just growing right out of it ain't he?!"...I'd say he is, thank God!


We have another sleep study scheduled for November 18th to see about trach decannulation. If things have improved since the last one that was done in February, the plan is to do a bronchoscope and check his airway then we will decannulate! I really feel like he doesn't need that ol' thing anymore. I think when it's gone, he'll thrive even more. Hopefully with the eating-by-mouth-situation, especially! He is getting more and more interested in food but still doesn't like textures. I can imagine trying to swallow chunks of food with a trach in would make a person gag and have an aversion, though. So my fingers and toes are crossed for trach decannulation in a couple months! Say a prayer for us, y'all.

We're having Mr. Clayton Cash a birthday party at Nan & Papaw's house on Sunday around 3. We're doing a little costume party, so Clay will be dressing up as George...I put together a Man in the Yellow Hat costume for Eric too, lol! We'll have chili and hotdogs and birthday cake, and will be doing a hayride with Papaw's tractor...Clay is so excited about it! Come on out and join us!

So, so thankful for another year with this precious boy. He is such a joy.
Year #2 was a fantastic year... I think year #3 will be even better :)

Lots of love to you all, dear friends! XoXOXo

A giant, rambling update about the past 4 months!

I'm a little ashamed that it's been 4 months since I've updated Clay's blog. But, I did just realize there was an entry from December that I started writing that didn't get posted..(!)

So, let's just pretend we're in December and this is what has been happening:
-------------------------
Clay's bronchoscope procedure he had last month went well...airways were open & clear, still evidence of immaturity, but nothing out of the 'normal' so we were free to go home a couple hours later

We had a follow-up appointment this past week and were given the okay to down-size his trach (he's at a 4.5, with plans to move to a 4.0 soon) and we were also told to start plugging trials. A couple hours during his awake time, we plug his trach so it's not being used at all. He has done very well with this! Coughing is different for him and freaks him out a little, but I think he'll get used to it. I also think it will be easier when the trach is out of his airway all together. We're waiting to hear our appointment date for a sleep study, which should be happening this month...but with the holidays so close, it may be next year before that happens. Either way's fine...They just want to observe Clay sleeping with his trach plugged before decannulation. If the sleep study looks good, we will have an overnight PICU stay so he can be observed without the trach at all!!!! NO TRACH! Hallelujah! or "Alllelullla", as Clay says ;)

Since we've been plugging his trach, we get to hear his voice quite a lot. All his grunts and squeals and funny words.. what Joyful, Joyful noises they are!

Still no real progress on the eating-by-mouth-objective. It's just been hard for me to get on board with the techniques we've been using, mainly the bribery. With our weekly speech therapy sessions, we will sit at the table with paper & markers (the boy loves to draw), and we tell him if he wants to draw, he has to take a bite of the food (which is usually yogurt or something with that thin consistency)...Clay will eventually take a bite (and by bite I mean he will lick the back of the spoon, with mouth wide open), then he'll make an awful face and then finally get to draw with the marker he chose. We'll do this five or six times until he's had enough. I just hate the fact that he's not enjoying it. I want it to be something he enjoys, but I don't really have any alternative suggestions. If any of my special-needs momma friends want to suggest something that worked for them, please let me know!

We are making some progress with physical therapy...I can tell he's getting stronger everyday. He actually stood up completely on his own a couple of weeks ago...In the middle of his room, he just stood straight up and then stood there unassisted for a good minute or so! It's not happened since but my mom & dad were there to witness it, so I've got proof. He's still got some hip-strengthening to do, but it won't be long til he's walking. Another huge thing for him is that he's been getting on his knees! He will get in crawling stance, but then will sit back down and scoot on his bottom. Hey, we'll take what we can get :)
-------------------------------
End of December post
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Now, fast-forward to March 13, 2014 and here's what's been happening!:

One of the things that I'm most happy about is the fact that Clay is gaining weight!! He's really filling out and I can just imagine every tissue in his body getting healthier and stronger. He's up to 29lbs now!! He was at 23.5lbs before his Nissen Fundoplication surgery back in October, so I'm sooooooo soooooo relieved to see those extra 5lbs on his bones. You can just tell he has much more strength all around, but especially in his legs. He's not walking independently just yet but it's not 'cause he can't, it's 'cause he won't. Lil turkey just needs more confidence and he'll be walking everywhere. We traded in our gait trainer for a walker in physical therapy, so he has a little walker he uses to get places. It's so stinkin cute.

Another praise for my big boy: he's doing so well with the potty training! He is very enthusiastic to go pee pee in the potty..it seems half of my day is spent in the bathroom, lol. He does have occasional accidents when he has on his undies or pull-ups, but he does perfect when he's running around naked. He has used the big potty a couple times here at home, but doesn't want to use the big potty anywhere else just yet. Regardless, I'm so proud of him! Our diaper usage has dropped dramatically... just in time for another one!!

Oh yeah, forgot to mention that news--Clay's gonna be a big brother!!!!!!! I'm about 16 weeks along right now, and we are very excited! We go in a couple weeks for an ultrasound to find out the sex and take a peek at how things are brewing. We found out about Clay's CDH at my 18 week ultrasound, so to say I'm a bit anxious is an understatement, but I've been trying my best not to stress about it. There's only a 2% chance of CDH reoccurring, so we've been saying lots of prayers for a perfectly healthy baby. I've just got a feeling it's a girl, so I'm excited to see if I'm right ;)

Okay, now back to Clay-news...
So, as far as the trach decannulation saga goes: after the bronchoscope and downsizing of the trach to a 4.0, we stayed overnight for a sleep study back in February (on Valentine's Day!). The purpose was to observe him overnight with his trach plugged, meaning it's completely closed off so he couldn't breathe in or out through his trach at all. This is not something we ever do while he's sleeping, so I was anxious to see how he'd tolerate it. Well, the sleep study went leaps & bounds better than I thought it would. They had the awfullest amount of electrodes hooked up to him and that sensor across his lip and those belts around his belly... I figured he'd be tearing them off and restless all night, but he fell asleep relatively quickly and slept okay throughout the night. He is such a well mannered and content little man, I don't know why I doubt him, lol!
I hated not having any monitors in the room with us because I couldn't see how he was doing number-wise! But I asked the RT a couple times and he said his oxygen levels were in the low 90's the majority of the time, so that was good news. Our wake-up call came at 5:30am that next morning, so we were both kinda grumpy when that happened, but hopeful for good results.
Buttttttt, it's not looking so promising as of now.
We had a follow-up appointment with the pulmonologist at the sleep clinic today, which also happens to be the same doctor we've seen regularly in the pulmonary clinic for the past year. So when he asked me, "who do you normally see over in the clinic?", I wasn't too happy to reply, "umm, you do". Granted, we have seen a different doctor before, but he didn't remember THE Clayton Cash?!?! Ha! All jokes aside, I feel like we should have a closer relationship to Clay's pulmonologist than we do currently and I've felt this for a while, but this visit today confirmed as much. Maybe I'm just being bitter about the results he gave too, I don't know. I just have a lot of questions and I'm about to start rambling (even more), so bear with me...
So, the results from the sleep study showed that Clay's oxygen saturation levels were average 93%, which is good. But he desatted a few times throughout the night, spending a total of 20 minutes below 90. Turns out, those desats came when Clay was in his REM stage of sleep. So, the doctor explained to me that those are apnea episodes, more specifically, most of them were hypopnea episodes. So in the hypopnea episodes Clay doesn't necessarily stop breathing all together, he just breathes more shallow & slowly which would cause his oxygen levels to drop. According to the charts he gave me, during Clay's total sleep time he had 4 episodes of obstructive sleep apnea and 34 episodes of hypopnea. Nearly 40 apnea episodes throughout the night, when I have never been concerned with Clay's sleeping patterns? It's just kinda crazy to me...
After a good ol' Google search tonight, I read that hypopnea episodes could be caused by partial obstructions in the airway....welllll, wouldn't a plugged trach be considered a partial obstruction in the airway?! Makes sense to me. Not to mention, the RT on duty that night in the sleep study had a very hard time getting the electrodes to pick up on Clay's noggin. He even told me that they may not get accurate readings of his sleep stages because he was having such a time with them. Of course, I'm remembering all of this now, after I nodded my head in agreement with the doctor earlier and had no questions at the end of the appointment....
I don't mean to discredit his concerns at all--Lord knows I don't want the trach to come out too soon and cause undo stress to Clay! What he explained to me makes perfect sense, but it's all a new concept and I need time to process, I guess... (This blog really helps with that, ha). There's just a lot of questions I have about all this business...so if anyone out there has any advice or insights for me, I welcome it with open arms!
We also discussed possibly putting him back on supplemental oxygen at night. His sats are usually in the low 90's...Like right now, he's satting 91% while he sleeps. Those aren't bad numbers, but because of his history of pulmonary hypertension and everything else, I've often wondered if we shouldn't help him out a little. So, we're looking into getting the oxygen concentrator back and I'm totally advocating for that. (Our med supply company came and picked up the ventilators and the oxygen concentrator a couple of months ago...so maybe I jumped the gun on the Os!).

There's lots more I probably should include in this update but it's 1am and I can hardly hold my eyes open, so I'm gonna call it quits. Maybe I can get around to a post with cute pics and more fun stuff next time...I'll TRY to not wait 4 months, ha!

Peace & Love, dear friends! We love you all!

My two year-old Clay.

I know it's been foreveerrrr since I last updated--I forget a lot of people only check my blog and not my Facebook posts--so I apologize (especially to you, CDH friend, Raelyn!)! But I can assure you things have been great with our big ol boy!

My last post was about Clay's puny-self after the Nissen surgery last month, while we were still in the hospital. So to catch y'all up--he ended up with a respiratory infection that left him on antibiotics for over week--we were able to finish them up at home via broviak, he was on a little extra oxygen for a week or so after we got home, but things have been fine & dandy since then!

Now that all the recovery is behind us, I am so happy that we had that Nissen wrap. Clay will still wretch occasionally but the Nissen prevents food from coming back up, so he's keeping down all his calories and is gaining weight!!! He's up to 25lbs, 8oz now...yayyy!!!! He also just acts like he feels so much better. Thinking back, I can tell now that he was probably in a lot of pain from all the reflux he was having. I was just blaming his extra-sensitive & clingy behavior to a normal toddler phase. It's just so hard to know sometimes! Thankfully, he is giving me a break from the worrying and I've just been able to watch him learn & grow.

It's just so amazing to see the world through his eyes. He notices every little thing, every new sound or sight. He'll get all excited and make this face:

(This pic was pre-haircut. Aww, I miss those curls!)

He'll click his little tongue too, to get our attention. He sure is an expressive booger.

And so thoughtful.

We celebrated Clay's 2nd birthday with a party with lots of friends & family! It was a beautiful, wonderful day.

 

As you can see, Clay had a good time too :)

Clay's toddler days are keeping me busy! He still scoots everywhere he needs to go, on his bottom. He's doing better about spending some time on his knees but still doesn't crawl. He can pull himself up to stand & he'll cruise along side the couch or ottoman. Boy, is he getting active. Tonight, we wallered all over the bed, doing somersaults and practicing standing on our own (he's much braver on the bed). He's making a lot of progress and will be walking on his own soon at this rate!

While we were in the hospital Clay had a barium swallow study done to make sure that when he swallows, he doesn't aspirate food into his lungs. I wasn't concerned that he was, but it's a precautionary thing they like to do before we are cleared for formal feeding therapy. He passed the swallow study, so now comes the fun part..feeding therapy! Haha, it's not really fun--it's quite frustrating actually, but I am glad we are able to start working on it. It's gonna be a long, slow, process I'm afraid. He'll lick things & take small tastes but anything with much substance will make him gag. It's a tricky thing, though...Clay's never learned to eat by mouth & with all the negative things forced upon him in his short life, I'm sure it's scary for him. I don't want to push too hard, but we have to try. Say a lil prayer for us & this process...we're sure gonna need 'em.

Clay has also learned to vocalize by plugging his trach with his finger. He doesn't particularly like to wear his PMV, so I'm just glad he's able to talk to us somehow. He loves naming people's things better than anything. For instance, he'll see my shoes by the door and he'll point to them & say 'mamma'. Or he'll see daddy's jacket hanging up & he'll point to it and say 'daddy'. I'm really trying to get him to name the actual thing instead of whose thing it is! Lol. He's such an observant little guy. He knows every car in the family and loves to talk about them, lol. A frequent conversation of ours goes like this: Clay looks out the window & says "Papa"...I say, "Papa's at work"...Clay does his sign for 'car'...and I'll say, "yep, Papa drove his car to work". Interchange Papa with Nana or Heee (Aunt C) or Hay-dee (Aunt Kd) or Eli or any other family member & that's Clay's favorite thing to talk about ;)

Last week, we had an appointment with the NICU graduate program where they tested him on all the social, cognitive, motor development and he did so great. I was so proud of him, I swear I coulda busted. Especially with the cognitive testing...when they were testing to see how his comprehension was, he went above his age & maxed out at the 3 year old level. Yes, I'm bragging. So hard. To think of allllllllll the stufffffff he's been through & his mind is still sharp as a tack. Amazing! Of course, he was behind in the gross motor skills but his fine motor skills were on point. He will catch up on his own time, I ain't a bit worried. 

He loves him some basketball...you can see the concentration in his tongue & check out that form ;)

Buckets!

The next big thing coming up is a Bronchoscope this Thursday, the 21st. It will be yet another sedation procedure, but we have to have it done to continue on with getting the trach out. And boy, are we are ready for that! Say a prayer for good results on Thursday, please!

Speaking of getting the trach out, our CDH buddy Mason got his trach out on Halloween! He has been doing great. Thank God!

We are so blessed. Really, truly blessed and I am so humbled & thankful for where we are now. Thank you all for continuing to keep up with our lil warrior's progress. Lots of love & peace to you all! Have a blessed Thanksgiving holiday! Xoxoxo!

At full feeds but feeling puny :(

Well the good news is, we are up to full feeds of 56ml/hr and he's doing great with that so far! His g-tube is still racked, and will have to be for another week or so, then we can work on condensing feeds into boluses.

We were hoping to be home-free today, but Clay's coughing is worrying me. He coughs and hacks and coughs and hacks, turns blue and breaks out in a clammy-sweat...I suction and suction and give saline drops and do breathing treatments. Once he's over the coughing fit, he'll huff and puff and retract and just flat out looks like he's struggling. He's been on 26% oxygen since surgery--which hasn't been totally necessary until lately. We had to bump him up to 35% this morning and he's still hanging out in the low 90's. His heart rate has been elevated over the past couple of days, too. Something's just not right. But we had chest x-rays done yesterday and they looked fine. He hasn't had a fever, either. It's just so frustrating not knowing what is causing all this and so pitiful to see him so puny. If it is something viral, something that may be lingering from our rubber-ducky incident--the cough has been lingering since then, but it's obviously taking more of a toll on him now--if it is something like that, then I'm perfectly fine with taking him home and setting up our Clay-ICU again. I'd rather have him home, where he can rest and be more comfortable...I just don't want to take him home and have to come right back! So, we will be here for another day or two until we get something figured out.

Y'all say a prayer for my lil man. This never gets any easier :(

Wake up, Clay belly!

Praying for poop...that's what we've been doing since surgery. He finally had a decent bowel movement tonight, nothing huge, but hey...it's a start! And it was without the help of a suppository so that's good he did it all on his own.

Poor little bug has been pretty uncomfortable, both with post-op pain and his bloated-ness. His belly has been distended and so tight, he looks like a lil pot belly piggy. A very cute pot belly piggy, of course ;)

Since his bowels haven't quite awoke from surgery, we haven't been able to start feedings :( He started getting some nutrients through is IV yesterday, but that's just not the same as tummy feeds... We've actually had to drain his g-tube constantly, so that all his gastric juices and air can escape, because otherwise he wretches and is extremely uncomfortable. We've tried to rack his g-tube a couple of times, which is when we attach a 60ml syringe (sans plunger) to his feeding tube extension and suspend it above him. With this, air can escape but gastric juices stay down. Both times we've tried this, he's not tolerated it so we put it back to drain. We don't want him wretching or gagging because we want his new Nissen wrap to stay intact. Surgery team isn't concerned with his sleepy belly right now...they say sometimes these things take a while. So, we wait.

He also had a touch of a fever tonight, 99.5..and he's sounding a bit wheezy in his lungs, and he's been retracting a bit when he breathes--which could be because of his overfilled belly. I'm really hoping things aren't settling down in his lungs; his cough has been a little weak because it really hurts him to cough. Poor fella, that's the last thing we need right now.

He has perked up a bit over the past couple of days... he's felt like sitting up in bed and is enjoying reading his books again..we took a lil wagon ride through the halls yesterday too. He's not back to his silly, smiley self yet, but we'll get there.

Handsome man.

Gettin lots of momma lovins...I think we're both tired of hospital living :/

Thank you all--for the millionth time--for your prayers & love & concerns for our baby. Lots of love & blessings to you all! Xoxoxoxo!