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!