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!