UCSF Once Again

We left later on Monday night after I got home from work. We wanted to go at an off traffic time and I wanted to see Ara for a bit before we left for a few days. Marsh was taking the first Ara shift, so we all ate dinner together before we left. Ara asked us if she could "Come too, mom". Her little sentences are quite adorable lately.

We stayed at Court's awesome Oakland pad, she was out for a concert but we made ourselves at home. I fed Owen a late snack as he would be fasting in the morning. We watched some America's Funniest Home Videos and were all hilariously laughing. Owen was laughing the hardest. He really likes the animal bloopers. When we contained ourselves we settled in to bed. Owen in the middle of course! We started him on the floor but he preferred our bed. How could you resist that the night before a heart procedure? We didn't.

The morning went smoothly. We had a nice little visit with Court and her cat Winky. We didn't have much traffic across the bridge, and made it to the new hospital with about 20 minutes to spare. 

Owen really loved this screen. I have to say I did as well. There were screens about 50 feet up.

 Owen has spent quite a bit of time at UCSF but I can't say it was a children's hospital. The new version was, by FAR! It was so nice to be in a place geared for kids. Even pediatric surgery had their own admissions... Versus every time we had checked in in the past we waited in a very small (about 10-15 seats) waiting room. The waiting room just for pediatric surgery was HUGE! And they had dinos practically waiting for Owen to play with.

 We made it to the pre-cath room about 1045. We waited there until about 215 when the team came and reviewed the procedure and we signed the waivers. Other than getting into a hospital gown and getting weighed, all O had to do was relax, play with dinos, and watch Dino Dan on the kindle. Chris and I were secretly starving as we were "fasting" along with him. We even both had had a granola bar at some point in the morning. We were laughing at how wimpy we were, quietly joking about what meal we were going to consume, etc. We had told O the night before he was going to be hungry, and he didn't mention it from the time he woke until right before the procedure. What a good boy!

Being goofy before the procedure

We reviewed the consents, and risks of the procedure, as we have done many times before. Some things get easier, although I can't think of what they are right now... But most things don't. Discussing risks, no matter how low, just stink. 1/1000 sounds pretty low until you are walking your kid into the room that they are discussing. We try to stay focused on accepting the risks, and believing that the benefits will outweigh the risk.

He was worried about "the pokey" that we told him he would get. The old way of doing things was so chaotic- before his last one I remember having Ara in the room, crying, signing the consent form halfway hearing what they were saying, as Chris was helping hold Owen down so an IV could be placed. Child life was there as well but sometimes you just gotta be quick with the hard and ouchie stuff. I wish I would have known not to warn him about the pokey because they gassed him and then put the IV in! He slept through it all, and kept asking about the pokey for the remainder of the night, not realizing he already had it.

 We got to walk in with him into the lab. We have done this each time. It was really nice to see mostly familiar faces. The cardiologist was the same, the anesthesiologist was the same one he had during his last open heart. That made me instantly relaxed as O had an allergic reaction during surgery which required him to stay on the ventilator afterwards to further protect his airway. And no one knew what the reaction was to. But this anesthesiologist knew our eyes and we knew his. Instant trust. Whew. Also, the same two cath RN's were there, Sarah we have had for all 3 caths now. All of these people we enjoy seeing again but also hope to not see for many years. It's a weird mix of emotions.

The anesthesiologist played a game with O to get him to breathe the gas in. Owen did it so quickly he was out pretty fast. He had fun doing it too!

We were very hungry so that was a nice distraction. We went to the cafe and loaded up on fat, sodium, and the like. A dear friend brought us some awesome Philz coffee and tea and then we were loaded up on caffeine too. It was a grand old time! Thank you, Jolie!

We had a perfectly located parking spot on the 10th floor of the parking garage. After spending ~3 months overall at the other location (3 surgeries, 2 caths...) we had some funny parking stories. I'm also writing this wondering if they are really funny or just to us who were craving distraction? 

I would always get carsick driving around the other parking garage and this other one was no exception. 10 stories of right turns ugggg...

But the views didn't disappoint. I called Mom and Ara and caught up. My emotions were pretty in check until I heard Ara's tired-just-up-from-nap voice say "Come home, mom". Oh those heart strings!

Usually this would have given me some mad whim whams in the kudu but for some reason I liked the rush today.

 Chris was sleeping in the car. His plan was to do this in the event that we had to stay overnight so he had a thermarest, sleeping bag and pillow. He was so smart and took the seat out as well.

 We got the call that he did great and he was out about 5ish. We could go see him in recovery about 530. The intervention was a success! We were stoked to say the least.

We went and saw him, he was sleeping so peacefully with a breathing tube in his mouth. They took an extra precaution just in case he had a reaction similar to last time. He didn't! This photo was after he coughed the tube out, and he was acting a little drunk, rolled around and fell back asleep.

 Pink lips! The whole point of the procedure was to plug the surgically made hole that was allowing his blood to mix. When the blood mixes in the way it used to, it does not allow his oxygen levels (aka saturations) to be very high. The highest we saw after the Fontan procedure last spring was low 90's. When his cardiologist saw high to mid 80's 2 months ago he knew we needed this hole plugged.

I had no idea he would improve so much. Most of his sats were 96-98% post cath. This means more oxygenated blood is getting to places where we want it! Brain! Nail beds! Wahoo! Chris kept thinking something was wrong with his nails but they just weren't purple!

 He didn't really wake up until around 830/9pm. He was fixated on star wars cartoons but also very hungry. We let him eat small amounts, although I think he would have eaten a huge meal. We took it easy and got lots of snuggles in. Chris went to sleep in the car around 1030, and O and I "fell asleep" around 11. He needed another dose of antibiotics around midnight so after I tossed and turned for half an hour I asked if he could have them early. Antibiotics are not standard for a cath but if a device is placed they are. Two doses, actually.... His functional medicine Mama has him on some good probiotics to replace those guys, although 2 doses of IV antibiotics are a little better than 10 days of oral on the GI tract.

His bladder took a while to wake up, which was on my mind through the night. Also his parameters on the monitors weren't set right so as soon as he and I would fall asleep, they would alarm. I figured that out about 1am. His RN adjusted the parameters for a child versus infant. His respiratory rate would fall when he fell asleep, which was fine for a 5 year old but not for a baby! I slept solid from 130-330.

 This kid was so stoked to order breakfast...He wanted pancakes, bacon, and apples. He ate it all then wanted more an hour later.

The new hospital was so beautiful. This was our view from his room. So many touches that make a difference when you are staying there. Not so important for a night, but for a long haul like we've done before, it is really nice to have a lot of nature components inside and outside.

 Huge private room

 Crusty morning faces and snuggles!

 His site looked good, vitals were good, chest xray looked good (meaning the device stayed in place!), and no fluid buildup.... WE could go home!

 We played at the laser screen for about 15 minutes while Chris went and got the car

 This kid has been rocking it. After his previous caths he has had emotional setbacks, almost PTSD acting, as well as being zonked and not himself. This time he is extra silly, wanting to play and roughhouse, and eating us out of house and home. I'm curious if it is the extra ~10% of oxygen that he's getting, or just being older and understanding more, or a combination of the two. Either way we are thrilled with this outcome. Having this device isn't without risk itself, but it's just another part of his heart that truly is one of a kind. This kid really amazes us daily in ways we never could have imagined!

 Thumbs up from home! Been doing homeschool, fighting with Ara, eating lots of snacks and laughing lots. Hopefully we can do a little trick or treating tomorrow and resume school Monday or Tuesday. Cath team recommends rest for 3-5 days, and no strenuous activity 5-7 days (like PE, recess, exercise).