We went in yesterday morning at 7am for the cath. Preop went very fast - in fact, so fast that I didn't have a chance to take our usual pictures and Versed videos! I have one preop picture of John and Ethan in the waiting room.
Ethan did very well for his anesthesia. The Versed worked better than usual and he was so doped up he couldn't even say complete words this time! He was very relaxed and went to sleep without a problem. :)
The cath went very well! They ended up ballooning his conduit instead of placing another covered stent there. One side of the conduit was narrowing, so he ballooned it open to match the other side and there were no problems. Dr. G said this will be the last time we mess with the conduit. We'll watch how things improve and how long this lasts before having to replace the conduit with the open heart surgery again. This will just be a wait and see process. Dr. Prietto (don't know if that's the correct spelling of her name) came in on the cath again. She is the pulmonary vein specialist. She wasn't sure that the images of his pulmonary veins from the CT scan were as good as Dr. G thought. It was hard to tell for sure on pictures, so they decided to go and take pictures/pressures with the cath. They worked on accessing his pulmonary vein for over 2 hours but couldn't get to it. His anatomy is just so incredibly difficult it's pretty impossible to reach it. The only option for accessing it would be through his liver. I'm not sure what the eventual plan will be for this, but as of right now I think we'll be leaving it alone. That all might change at our next appointment, but as of right now I think that's the plan. At the end of the cath, they placed his 9th stent in his SVC. I saw the images of his SVC and was very surprised at how narrow it was! We saw the stent placed and opening, and it looks amazing now! :)
This could hopefully really help out with Ethan's headaches. Ethan has a neurology appointment in December for a headache and ADHD recheck as well as genetic screening. We can discuss the possibility of weaning off the Periactin (his headache medicine) to see if he truly needs it after all. My hesitation with this is his appetite has been much better on the medicine, so it would be a shame to go back to not eating!
Dr. G finished up with the cath around 6:30 and we were able to go back and see him in recovery. He looked really good! And we saw he still had his tooth! I can't believe that wiggly tooth made it through two intubations this week! :) We found out he didn't have any major arrhythmia issues this time. He had a couple rounds of irregular heartbeats but it was due to the catheter triggering it. They were able to get him back into his normal rhythm with just maneuvering the catheter and not needing any medications for it! Big relief! I was worried about it since we had those questionable rhythm issues at Monday's CT scan. Thankfully everything went so well!
After about an hour in PACU recovery area we headed upstairs to our room to "sleep" for the night. Yeah. Before we even entered the room I knew we were in for a long night. We shared the room with a little 3-yr-old boy recovering from surgery. He was in pain and had the highest pitched scream you could possibly imagine. We heard it all night long. But it's not like Ethan was sleeping anyway. Somehow he was WIDE AWAKE and starving all night long!
We stayed awake building Legos, eating, and watching "Beyond Scared Straight" on TV. Ethan loves jails and for some reason is very interested in that show!
He had IV antibiotics, groin pressure dressing removal, and an EKG scheduled for midnight so I didn't even bother trying to get him to sleep earlier than that. The doctor came in and did the EKG. She returned a few minutes later asking if Ethan's heart was backwards. I'm so used to our usual technicians doing it that I didn't even think to tell her it was. She said that explains a lot! She redid the EKG and I tried to get Ethan to settle down to sleep. He decided he was hungry and talkative instead. Around 1:30 our wonderful neighbors woke up. They turned on their lights and TV for the kid. I couldn't believe it! After about an hour of them acting like it was the middle of the afternoon, they turned everything back off and went to sleep. At 2:30 the child was screaming. He wet the bed, and this made everyone wake up to change all his bandages and bedding. This is not an easy and pain-free procedure on a little kid recovering from surgery! At this point my pity for the poor little kid was fading quickly. :/ We went back and forth between Ethan demanding snacks and the neighbor screaming for the rest of the night. Our nurse couldn't believe that Ethan didn't sleep a wink the entire night! With all the sedation in him we totally thought he would've slept through the night - or at least part of the night! That kid never ceases to amaze me!
This morning Ethan ate a big breakfast, played his new LeapPad game, and played with Legos some more. He was in a good mood, still surprisingly hungry, and still not tired. We went downstairs this morning for a chest xray. It was his first time up and out of bed, and he was sore. However, this was the very first cath he did not need ANY pain medicine! I was very pleasantly surprised by this! Usually he doesn't need much, but he's never made it through without a dose of Tylenol. He earned a prize of a bag of craft supplies from the xray lab for being brave. :) He was happy about that.
When we returned to our room, respiratory therapy came and did his treatments. Ethan wasn't thrilled with that since he hates treatments anyway, but this time the coughing really was irritating his throat. :(
Dr. Zahka stopped by this morning and dropped off some of his famous homemade cookies! They were delicious! :) He also did a happy dance for us over how great the cath went and how the stents looked! LOL
After a lot more lounging around, snacking, playing games, and watching TV, Dr. Golden stopped over. We discussed how great everything looked on the cath again and how well he was doing. We also discussed his hemoglobin levels. His heart had always made his body have levels of around 17. His reading at this cath (and apparently for the past few months to a year) have dropped to 13. We're not exactly sure the reasoning behind this decrease, but the topic of starting to take iron was brought up. We sent the orders in, but they have been delayed until a final decision is made on Monday. The docs need to determine exactly what dose they want him at as well as ensuring that it would be beneficial to take iron. I am wondering if any hereditary anemia is happening. I struggled with anemia throughout my life. In fact, the past couple of weeks especially I've considered getting my levels checked to see how bad I am right now. I'm have constant exhaustion, my persistent nausea, and chronic headaches. It may not be related at all, but it's definitely a possibility to look into. We'll find out about the iron supplement early next week.
After our meeting with Dr. G, we were sent down to have an echo done. Ethan walked the entire way down to the cardiology office for this! He was obviously feeling much better by this point! :) The echo went really well thankfully. I believe they were able to see everything they wanted and his stents look good!
After the echo we returned to the room to eat lunch. Ethan was thrilled about this since he was once again starving. LOL! I don't know where this sudden huge appetite came from, but I'm loving it! He ate a huge lunch and built a Lego dumpster.
Around 2:30 pm we were discharged! They pulled his IV, removed leads, signed paperwork, and sent us on our way! :) We stopped in the cardiology hall on the way out to see the "wall of heroes" or something like that. I can't remember what the display name was and of course I didn't get it in the picture. His picture and description was displayed! We were very excited! :) Famous LOL!
About halfway home Ethan's head was nodding in the backseat. The sleep deprivation was finally catching up to him. He fought it off and stayed awake for dinner. Then at 6:30 begged to go to sleep. We kept him awake until 7 but gave up when he fell asleep sitting up on the floor. He went right to sleep and hopefully will sleep really well through the night! He still has his pressure dressing on his neck because we were a little nervous to take it off right before he went to sleep. I'm sure it would've been fine since we haven't had any bleeding issues with it, but we figured it couldn't hurt to keep it on until morning. Hopefully it won't irritate his skin too much.
Thank you all so much for all your support and prayers! We are so appreciative of all the messages, prayers, and visitors! We even had our church pastors visit twice to pray with us! It means so much and we are so thankful for all of you! Please continue to pray for us for healing and continued great news! :) I'll keep everyone updated with how he's doing.
We return for a cardiology recheck on December 18th. That day will be his 6th anniversary of his second open heart surgery, so what better way to spend it than in the cardiologist's office! :)
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