Home!

We are home! Yay! We got to the hospital at 8:30 this morning, and our sweet nurse informed us that as soon as we were ready, Asher could be discharged. We were so excited! She got started on the paperwork, and had Bonnie, the Cardiology nurse practitioner, come up. In the meantime, we bathed Asher, and got him dressed in his cute monster jammies to come home. Dr. Kaza didn't have any surgeries today, so he came up to say goodbye to Asher.

We love Dr. Kaza! You couldn't have a nicer guy operate on your child. He says he feels like every patient is his own child, and that when he is doing surgery, he is an instrument in God's hands. Really, he is the best. And he came to see us several times every day! So great.

While we waited, Daddy and Asher had some cuddle time in the rocker. Asher is so much happier today over yesterday. He is more like his normal self.

Goodbye morphine Asher! He is now on just tylenol and ibuprofen.

Goodbye oxygen sensors, iv's, and heart monitors!

Goodbye iv pokes. Ouch!

Goodbye "prison" crib

We are soo happy to be home. So grateful all went well. So blessed to have Asher home with us.

Recovery

Recovery is going really well! Asher got moved out of intensive care last night. He is no longer on sedatives, and is only on Tylenol for pain. He is also completely off of oxygen. Yay! He seemed pretty uncomfortable yesterday, and had a hard time relaxing and sleeping. But he is making up for it today! They removed his chest tubes this morning, and gave him morphine to reduce the pain beforehand. And he has been a zombie ever since; he is finally starting to snap out of it. And I am feeling like less of a zombie, also. Baby Jacob has slept through the night for the past 2 nights, so I feel very well rested!

Asher has been very popular- His Grandma Atkinson came on Monday, and his Uncle Jonathan. Tuesday his Grandpa and Grandma James came for a visit, and Adam and I brought baby Jacob, Taylor, and Jonathan to visit. Today Asher's Aunt Kimberly and cousin Camille came to visit. It has been so nice to see our family here- Thanks for the visits! Also, thank you to everyone helping watch the kiddos, and for the lunches. We really appreciate it.

Asher had an echo done of his heart today. Dr. Kaza, his surgeon, came and spoke with us and said everything looks great. He could potentially come home tomorrow morning! So amazing. Again, thank you for all the prayers and support. I'll post again tomorrow.

Surgery Day

Our little man had his surgery today. We had to be at the hospital at 6 am- uugh! But, that also meant we were the first surgery of the day, which is always a good thing. Surgery started at 7:30 am, by 8:30 am they had finished all the prep (anesthesia, iv's, art lines, echo, etc.), and started the incision. They finished up at noon- I think we saw him at about 1 or 1:30. Dr. Kaza was really pleased with the results- they were able to use a larger, 19 mm porcine valve and conduit this time. This is ideal- pig valves last longer than the homo graft (cadaver tissue) he had before (which was calcified, thus the leaking), and the larger size means he shouldn't outgrow it for several years.

Asher is recovering in the CICU now (cardiac intensive care unit). They removed his breathing tube, and he is on a 1/2 liter of oxygen right now. He should be completely off of oxygen by the morning. He was difficult to sedate after surgery, when he came off of anesthesia. He was on verced, but it didn't last long. He was really upset, trying to take off his tubes and iv's. That was hard to see- he was reaching out to us, but there was nothing we could do for him. Just try to help him lie still and calm down. They gave him precadex, and morphine, and atavan, and finally he calmed down and slept. We'll go back to the hospital in the morning- the game plan is to wean him from sedation, and then start trying bottles. Hopefully all goes well. Thank you for all of your prayers and love. I am dog tired (thus the dry, not cleverly written post- sorry Rachel!), and just want to pass out (2 nights of no sleep + allergies + allergy medicine + heart surgery on your baby will do that to you!).

Heart Cath and Other Fun

Life has been a bit busy around here! (Nothing new for us). We are trying to keep Asher away from people, so he doesn't get sick. But we are also trying to let the other kids still have fun- not an easy balance! Before Ash had his heart cath, we took the kids to an old farm to take pictures. They were not particularly cooperative, but I still got a few decent shots:

Crazy Asher!
Jon playing on a tractor

Taylor

Jon being silly!

King of the tractor

Cute Ash

Taylor

Love this one!

The day before the heart catheter, my mom came down. We went to the fair, and she stayed the night, so she could watch the kids bright and early while we spent the day at the hospital.

Eating dinner on the back porch- followed by yummy homemade ice cream at the neighborhood ice cream social.

Day of the heart cath- we don't like hanging out at the hospital during procedures, so we went out for a yummy breakfast at Gourmandies Bakery in Salt Lake City.

Asher had his cath done this past Thursday. Everything went well, but not exactly according to plan. They had planned on ballooning open what they thought was a narrow branching pulmonary artery. But when they got in with the cath, they felt it didn't need to be ballooned- which is good. The Dr. did find a fairly large collateral artery coming off of the aorta and connecting to one of his lungs. Asher didn't need it, since that lung segment was already receiving blood flow through the proper channels. So they put a coil in the artery to cut off the unnecessary blood flow. Then they took lots of images for the surgeon.

Now we are just counting down to surgery on the 26th. It's coming fast! The cath felt like a trial run. I realised while Asher was in recovery, that there is no way I can have baby Jacob at the hospital with me when Asher recovers from surgery. He is way too active! He takes every ounce of effort to keep entertained and happy. So- I made sure to schedule sitters for Jacob, and the big kids.

This past Sunday we took the kids up into American Fork Canyon. We had a nice picnic, and then tried doing a little rock climbing (Adam is and avid climber). Rock climbing with 4 kids was not our most brilliant idea! As I was on the mountain, trying to figure a tricky move(for me-at least)- Jacob was down below screaming bloody murder, and Asher is throwing rocks everywhere. I gave up. Then we tried getting Jon and Tay to climb- they were both more than willing to try. And they both totally chickened out mid-way; I think I set a bad example for them! We'll have to try again without the little babies.

The kids and a fuzzy caterpillar they found

Jon Jon climbing

Out of order pictures- oh well. Outside of the fair. Thanks HopeKids for getting us in!

Asher and Grandma riding the train

Asher, Grandma and Jon on another ride

We were pretty freaked out having Ash on dirty carnival rides! He pretty much got a bath after each one. But he had fun- and had some good Grandma time. Now we are on the super-quarantine. No more parks or anything for Asher- surgery is less than a week away!

Echo Results

Oh the fun of a sedated echo! Ash was not even slightly cooperative today. We were the first appointment (yay! don't have to starve my baby for too long!). However, being the first appointment also meant that I had to wake up at 6am, get showered and ready, get the kids ready, and be out the door by 7. It also meant missing out on taking Jon to his first day of preschool this year (boo). And, although we woke up at 6, and left the house at 7, we still managed to be late for our appointment (MAJOR traffic at the University today). Oh well.

We warned the sedation team that Ash is VERY difficult to sedate. After 2 pokes for the iv (ouch!), they started him on the strongest sedative they could give him. And then had to up the dose. And give him ketamine. Finally he fell asleep, we grabbed breakfast in the cafeteria, and got back in time for them to finish up the echo. As soon as they were done, he woke up (not good!). He was supposed to sleep for 2 hours- the echo only took 30 minutes. Hmm. He was grumpy and loopy. And wanted to walk, but couldn't. It took about an hour to wait to speak with the cardiologist about the results, and 2 minutes for him to talk to us!

The results: Asher's echo showed the severe leak of his pulmonary valve, and the narrowing of his main trunk of the pulmonary artery. We expected this. However, it also showed narrowing in the branching section of his pulmonary artery. When he had surgery in Stanford last year, they put a patch in his branching pulmonary artery, in order to widen it and allow for easier blood flow. However, what has occurred is that on either end of the patch, his artery has narrowed. This is affecting the blood flowing to his lungs, and is also creating pressure on his pulmonary valve, which caused the valve to go bad so quickly.

So what do we do? They can't fix it during his open heart surgery, because of where the narrowing is. So, in the next 2 weeks (we don't have a date yet)- before his OHS, he will have a heart catheterization done. They will place a catheter through his groin, into his heart, and balloon open the narrow sections of artery. This needs to happen prior to surgery, so that we do not have this same problem again with the new valve. More fun for us! I will repost when we get a date.

The "Fishy" Park

I'm not thrilled with the parks in Sandy. I think they are all very boring and basic. I go very much out of the way to take my kids to parks that I think are fun, interesting, and creative. Sometimes this means I drive 20-30 minutes away. And inevitably, during the drive, the following conversation occurs:

Kids: Where are we going?

Me: To "X" Park

Kids: No! We want to go to the Fishy park!

And then I have to convince them that they do not really want to go to the fishy park, and the park I want to go to is better. They end up having fun, but-.

What is the "Fishy" park? A park a mile away from my house, with a bridge on one part of the playset with a large fish on the outside. I do not know why my kids like this park soo much.

There are no swings.
There are no bathrooms

The slides are terrible- either slow, or too bumpy and steep

But my kids adore this park

There are lots of monkey bars

And my kids are definitely monkeys

Even Asher is getting in on the monkey action.

So Saturday, when I was going absolutely stir crazy trying to keep Asher quarantined so he doesn't get sick, we went to the Fishy park. And the Fishy park at dinner time on a Saturday is a ghost town, which is exactly what you want when you are trying to keep a toddler healthy. The kids were in heaven.

FYI first thing in the morning Asher has his echocardiogram. I will update tommorow letting you know how it goes!

Surgery Date Scheduled!

Surgery is officially scheduled for September 26th. We were hoping for a little sooner, but Ash's surgeon will be gone for 2 weeks, and the 26th is his first day back. Also, since Ash is sick, we have to wait until he is better, and then add 2 weeks to that before they will operate. Uggh. So, our family is quarantined because Asher is sick right now, and because we don't want him getting sick again.

It's been a bit cooler here today, which has been nice. This morning I was talking to Adam, and commented that the weather reminds me of Palo Alto (where Ash had his 2nd OHS). Well, of course it does! Ash will have his 3rd surgery almost EXACTLY 1 year later. So crazy. As stressful as that time was in California, sending our baby in for very major surgery, we still miss that place. Hopefully someday we can go there for vacation!

I've also noticed I feel a bit more apprehensive about this surgery. I think it is just because we know Asher so much more now. He is older, has a definite personality, and is just so much a part of our family. I guess there is more fear about something going wrong; in some way I feel the loss would be that much harder on us now if something were to go wrong, as unlikely as it may be.

Enough rambling! So, the 26th is the day, and now the planning begins! We are busy having pre-op tests done, scheduling time off work, planning help with the kids, and pumping milk for the baby, since he won't be at the hospital with me during the day. I thought things were crazy before. Ha!