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).

In the Shape of a Heart

Tomorrow we are headed down to UCSF for Owen's 4th heart cath. He has had one prior to each surgery, and Tuesday he is having one to close the fenestration (4mm slit) in his atrium that was created in his last surgery March 2014. Up until 2 months ago we thought it was closed, as the echo had also confirmed. When his oxygen levels were in the high 80's at his last appointment, his cardiologist Dr. Rivera confirmed that the small slit was still open, likely only 2mm. Owen's oxygen levels should be in the low to mid 90's, and most everyone else should be at 100%.

I found out some more details Friday regarding the procedure. He is second case, so will need to fast after midnight until the procedure, which is scheduled for around 12/1pm on Tuesday. This the longest fast he has done, as babies always have preference. The procedure is supposed to take 3-4 hours, and then he needs to lay flat after that. It sounds like we are going to stay the night. We were hoping to come home the same day but I don't think that is going to happen. Last time he was so zonked after sedation, then when he did wake he was out of it and had a skin reaction, and he ended up walking and talking later than we all expected. We did come home that same day last year but we left around 9pm. They are going to be inserting a device to close the hole, and looking for collateral veins to see if they need coiling at all to improve circulation. He had that done prior to the Fontan procedure.

The fenestration is a pretty common intervention during the Fontan surgery to provide a pop-off valve for pressure in his heart.




Up until Friday we weren't sure how they were going to close the hole. The fellow I spoke with said they use the same device that is used to repair ASD defects, more commonly known as a "hole in the heart" defects and repairs. It is a synthetic device, like this: (just now looking this stuff up for
my own knowledge as well.). It plugs the hole up, and will allow his circulation to "normalize" and his sats to come up a bit. The problem with the hole being open is that he is at a higher risk for stroke than normal. Clots, platelets, etc can get stuck in the small hole. He is on one baby aspirin daily, but it's hard to say how thin that really makes his blood. The stroke worry is always there, but with a known hole in his heart we needed to act on this as soon as we could get onto the surgeon's schedule. It was about 6 weeks out when we scheduled it. Important but not emergent... As he had been living with it open for almost 1.5 years whats another few weeks?

Kids like Owen have a very different circulatory system in part due to their affinity to form collateral vessels. If the circulation isn't working right they will make another route to get the blood across. We do this as well, our survival mechanisms are mindblowing. But with a standard heart and circulatory anatomy, an adult's incidence of collaterals is usually only present if they are attempting to avoid a heart attack by making their own way to bypass the blockage. Sometimes this works, sometimes it doesn't. In Owen's case his circulation is a little off as it is following pathways that have been surgically altered and/or not using ones that were there.

The children's hospital has moved since we were there last. It is a brand new hospital, closer to the bridge, so hopefully private rooms! We are looking forward to a new experience, hopefully quick and easy!

A refresher on his heart info: his original birth defects are Ebstein's Anomaly and Partial anomalous pulmonary veins. He had the BT shunt (1 month of age), the Glenn (8 months old), and the Fontan (3.5 years old). He has had 1-2 previous heart caths (we've lost track!) You would think we would be used to this by now but the reality is that it stirs up the emotions of each hospital stay.

You keep it up
You try so hard
To keep a life from coming apart
And never know
What breaches and faults are concealed
In the shape of a heart
Jackson Browne

That song just pulls at my heart strings its playing loud this morning as we are playing dinos and eating pancakes. 

~Please lift us up on Tuesday~ say a prayer, think a thought, or simply smile with Owen in your heart~

Owen August turns 5

O my heart, my joy, my best boy! You have counted the days until you're 5. Now it's here and it's such a pleasure to watch you thrive. You swim at lessons and make me count my blessings. 

Exploring the calming water makes you at ease~ but so does anything that comes with wheels~ you're easy to please.

The day you were born was filled with such emotion~ exhaustion~ fear~ excitement. We never could have written the last 5 years and I can't say I would have planned some of it... But that is life, throwing you curve balls as well as SUPER AWESOME KIDS in our case! We have had the best 5 years with you bud, you are my teacher, my friend, my giggle partner, and adventure seeker. Here's to an amazing year ahead.

Make a Wish event

Chris had a connection at work whose husband used to race dirt bikes with a now professional monster truck driver. He contacted him, who contacted someone who contacted Chris who set us up with a group of kiddos via Make a Wish. We have not pursued anything like this but we were grandfathered in in a way... I guess the kids we were going with were in a chapter locally, but there were also some from Mississippi, so I'm not quite sure. Basically given Owen's heart history the driver connected us to this awesome event.

We were so excited as well...I was rallying the kids up, saying thumbs up, and Ara put all of 'em up.

 We got to the stadium early and the kids were good. They tend to behave well when I would expect them not to, which is nice!

Also, while we were waiting, Ara saw this sweet little girl and walked up to her. The other little girl knelt down and hugged her, and Ara hugged her right back. They stayed there for at least a minute, just hugging on each other. I took it in for a while, then pulled out my camera, since I was so prepared for documenting. The girls loved each other. Turns out, her name was Arabella. CAN YOU BELIEVE THAT? It was so crazy. What a sweet family they were. It was just serendipitous that the girls would hug it out for so long. Brings tears to my eyes thinking about it again.

 Once in, they got to meet pretend monster truck driver guys dressed as the real ones. Both kids were a little nervous of the large headed men. I don't blame them.

 Of course we all had to get in there for a picture.

 Another family photo op.

Owen had an opportunity to ride inside a monster truck. These trucks are designed to carry many kids and parents. We didn't really give him the option, and he followed me onto the truck. (Chris has been suffering from a weird vertigo-migraine thing lasting 1.5 weeks at that time so we had decided that I would ride with O). It was pretty crazy! It was only 2 minutes or so, thank goodness, as It was bumpy, windy, dizzy, wow... I was a little car sick myself. I thought that the drivers would take it easy, especially with special needs kids, but they sure didn't! It was quite a ride.

 Owen saw this monster truck driver, Nicole, and wow, he was so into her he kissed her on the cheek! He was all about it! She loved it.

 What a ladie's man!

 Next up we walked to a different part of the pits for the meet and greet of the drivers. As we were walking up, Owen spotted Cam McQueen and says "Hi, Cam McQueen!!" Cam was stoked as well, especially kinda cool that a 4.5 year old knows you by your face!

 At this point I was wearing Ara in the ergo carrier, filming with my left hand and taking digital photos with my right, as well as breaks to be in the moment. It was just AWESOME! We were on such highs, and starstruck with and for Owen.

He was just looking around the crowd, recognizing faces.

 He knows the drivers as he watched the monster truck DVDS during hospitalizations and not fun doctors appointments. That is the reason why he can recognize them and call them by names. When they drive they are all covered up with helmets and such. But on the dvd's they take their helmets off and talk about their races.

For some reason, 2 years ago, Owen decided that the truck Bounty Hunter was his favorite. Don't get me wrong, Jim Creten is an awesome driver, but for a 2 year old to say with confidence that his favorite truck (or thing for that matter) was Bounty Hunter, without even knowing what an actual Bounty Hunter was, was pretty funny. He has been his fave for years, so we were all excited to meet him. He was especially tender to Owen.

 Also pictured, Candace Jolly, one of the female racers. (yes I know most of them by name as well). If you are boggled still, think of how most kids or girls like disney characters.
Disney characters: most kids : : Monster truck drivers: Owen. Does that make sense now??

 Here is Dennis Anderson, the Gravedigger Driver. If you know one monster truck it is usually gravedigger.

 Max D driver was really awesome as well. He invited Owen up into the monster truck. I didn't see any other kid get this opportunity. Owen was STOKED!!

 Lifted him right up,

 Owen has to sit alone, there is only one seat in there.

 See through floor so they can see the ground when they are jumping.

 Damon Bradshaw, our connection and friend. He was awesome, checked in with us, and made sure we were getting great treatment. He puts on an awesome show, and he is for sure another top fave!

 Hugs from Cam

 Two happy guys!

This was a dream come true for O, so of course it was for us as well. We were all so happy and on such a high. There is nothing like seeing your kid in their element. Owen was looking around the crowd, for the next driver, so thrilled to be there, so happy to meet the people he had only seen on screen before. What an amazing event Make A Wish put together!