Swagger Wagon

We got a minivan! Yeah, it's so dope! We call it the Swagger Wagon. A 2008 Toyota Sienna 8-seater. Heidi was on kelly blue book instead of craigslist, and she saw this unusually low-priced van at a dealership in Pleasanton. She called to ask why it was so cheap and it was something about how it had sat on the lot for 60 days without selling and needed to be moved to another lot or dumped at a loss.

We went to the lot about two weeks ago and I strolled in, saying that I was a buyer.

"A buyer? What, you buys cars?"

"Yes. For my client."

We go out to check out the van and Heidi and the kids joined us. The salesperson learned that my client was Heidi, but I make him fire up the engine and I listened to it with the steth. I check out everything, and when I opened the rear door, there was a strange grinding sound.

I asked the salesperson about it and he panicked, trying to get the door to behave. Then he slams it shut, and we can't get it open from the outside.

So I low-balled him: "The timing belt hasn't been done, and that's a thousand bucks. Also, the door is broken. Let's see," I pull out the iphone and look it up, "these guys on the internet say it's $650-750."

He took my low offer and we drove it home that night. Yeah, minivans! It is way more powerful than Heidi's car. It's a 3.5 VVTI v-6 and has a built-in 8 inch subwoofer. Not exactly a Pioneer twelve, but maybe, just maybe, it's good enough.

The kids love it. Especially the built-in DVD player. I like that it's powerful and does better on gas than Heidi's dog ford. I fixed the door tonight with a specially ordered part from the dealership, and you can read about it here.

The deal gets better. I made them call the dealership who did the 80,000 check-up to see if the timing belt was done. They said that everything else was done but for some reason the timing belt was not done. I told them that is necessary and deducted the amount. They did it. Anyway, when we got home I looked into getting it done and turns out that the 2007 models and up no longer use timing belts which are expensive and need to be replaced every 80,000 miles. They upgraded to chains that go way longer. Pays to do your homework for older generations and not the actual car you are going to buy. Innocent mistake that saved us $$$. Woot Woot!

Heidi's favorite features....8 seats! If I was going to buy a car to fit more people I wanted it to fit as many people as it could. I love that I can fit 8 people or fold the entire back seat down and fit my kids in the middle row. I would highly recommend. Play dates and watching others kids have become much easier. DVD player. Blue tooth capability. Remote Control Door Opener. Power sliding doors on both sides that open and close from the comfort of my bottom. Back up sensors. Love it! Feel very blessed and very spoiled.

What a week

We are still alive.

Tyler wasn't too stoked about having to wear this holter monitor, but we each put on a button to have a contest of who could wear the button the longest.

Luckily, Grammy helped the boys by watching videos with them,

reading to them,

and blowing bubbles with them.

They were over-tired much of the time

Tyler kept getting headaches with his new enalapril

Scott barfed on Thursday and Friday and just wanted to lay around like this

Kira was doing pretty good most of the week.

It was a rough week. But we are happy to have these kids. I am happy to be employed. We love where we live.

Tylers short hospital stay

Didn't take many pictures because it was a pretty uneventful stay. The ones I took showed that life wasn't all that bad for Tyler. If you look closely you can see that in picture #2 he has cookies in one hand, cracker jacks in the other and a movie between.

The greatest nuisance for Tyler was his IV. Probably because it was irritated from too much DS playing. I did advocate that it needed to be in the least annoying spot while playing. The nurses had never had such a request but I must look out for my little guy, right? he called it his yellow shot because the needle into his arm was yellow. He loved to take off his leads. And went through periods of disliking his pulse ox but for the most part was pretty good. You can tell when Tyler is under stress at the hospital because he doesn't talk much. The first day he maybe said 5 words to others and had a look of worry of what was to come. He was aggravated waking up from anesthesia which is understandable. He wanted to do all this stuff that his little body couldn't and luckily fell back asleep after about 30 minutes of total confusion and slept it off.

Cute moment. Tyler blessed the food one day in his sweet little voice the day of his surgery. He said, " We are thankful for this day. We are thankful for this food. We are thankful for the nurses." Soo cute. The nurse was at the door and overheard and thought it was simply the cutest thing she had ever heard. She told people about it for three days. See, even if these little ones willn't thank a nurse personally for the shots, bp or temps they receive, they are thankful in their hearts.

Pop came to visit the last day and it made Tylers day. He loves his Pop!

Home Sweet Home

Tyler and I came home yesterday after a shortened 3 day visit at the PCICU aka 7East aka Pediatric Cardiac ICU. Not a bad place if you aren't having major surgery. All of the nurses are wonderful and so nice. They become like family. And the doctors are always there to answer questions, explain things and talk about swimming and kids.

So here is the detailed story. Day 1 Danny dropped me and Tyler off at the waiting room around 6:30. There was no bed in the transitional ICU or ICU so we waited in the waiting room which isn't all that bad. Less anxiety for the little man, quieter and less like a hospital. They brought us up to the 6th floor, got Tyler and mom prepped on his cath and brought him to cath lab within about 30 minutes. Small world, the 1 pre-op nurse and surgeon both went to BYU. Maybe that happens at Primary's, but usually not at UCSF.

Tyler got some verzed (a drug that makes you relax and forget the event which Tyler was enjoying). Got in an IV, got him to sleep and he was ready to go. They debated a coarctation in his PA that was from the Sano Shunt, but decided not to since it would be done during the Fontan. Everything looked good. Pressures looked good. His AV valve was moderately leaky, which we were aware of from previous caths and echos. But his cath surgeon thought he looked good for surgery.

Tuesday morning the surgeons get together to discuss Tyler. There are three main things that they look at prior to Fontan. The first and most important that qualifies a kid is the pressures. If their pressure is too high, the child will not sustain a Fontan and it is a no go. That isn't a great scenario, but can be decreased with meds. Tyler's pressures looked great so that was no big deal. The second thing they look at are other issues, such as leaky valves. His AV valve was the most concerning for Dr. Azakie. He said that he is just about at the 50% mark of Fontan candidates that he sees. That isn't horrible, but also not 100% ideal. So they look at how he is doing at home, what his pre-op med levels were and see if the kid would benefit from more time or would benefit from the surgery. In Tyler's case, he is doing fairly well at home and on a very low dose of blood pressure meds, so Dr. Azakie said that he would like to see if a more reasonable dose of blood pressure meds would help his AV valve and ventricular function.

He said we could probably go forward with the surgery and expect to be in the hospital another week or two or postpone it and see what a higher dose of blood pressure meds would do. His cath surgeon said everyone has their opinions with logic and there is no black or white for this situation. So we are home with increased meds. He is on 5mg of enalapril 2x/day and 1ml of lasix 2x/day. The increased dose of enalapril could affect his kidney so they will monitor that with blood work. He will have a holter monitor and echo this week as a base line and probably be reevaluated in 3-6 months for surgery if everything goes smoothly. It generally takes 3 months for the medication to make a difference. Dr. Azakie felt confident that this would help so we feel at peace about things. He is getting headaches which is not great, but doesn't seem to be dizzy or not tolerating the meds.

Danny gave Tyler a priesthood blessing and it said that the doctors would be confident with his pressures and function prior to surgery, so I have peace and feel good that this is a necessary step to get us there.

People have asked if we are dissapointed. I think it is hard to hear that your child is not the perfect candidate for a Fontan (whatever that means). It is a reminder that your child really does have a MAJOR heart condition and his heart is working really hard. With that, I do realize we are so very blessed to have meds available to Tyler to get him there and doctors that are some of the best in the world for HLHS. They know what is best and I have total confidence in their judgement. I do feel so blessed that if we wanted, Tyler could have received a Fontan. Perhaps not under the optimal condition, but he is a candidate. That is a blessing!

I can't speak for all, but Danny and I have been blessed with experiences in life that make you realize so much is out of our hands and in the Lords hands. Including his perfect timing for things. We had so many people praying and fasting for Tyler that I know that this was very much guided by a higher power and what is best for Tyler. I feel at peace about that and that is all that really matters. We have learned to go with the flow and do whatever is best. With medicine you really don't know what is best from one day to the next. Plans and conditions change and you have to enjoy the now and gain patience.

I think it would be different if Tylers quality of life wasn't very well. I have a feeling these next couple of months are going to be months to relax and enjoy each other before the next major surgery.

Fontan no-go

The team decided that although Tyler's pulmonary pressures are good, his AV valve leaks too much and they would rather postpone his surgery since now he is only an average candidate. We have to rely on the expertise of our specialists, so we will follow their recommendations and Tyler will likely come home tomorrow on enalapril instead of captopril. Good, because we never liked that captopril. When I spoke with Tyler on the phone, he just wanted to play his DS. Heidi said that's how he's coped with the stress. Oh, the brave little man.

I was planning on riding the VFR to San Francisco and spending the night with Tyler, but I was throwing up all night. So I'm going to stay.

I spoke with a pediatrician who said that when he's doing a procedure and he's done all he can, he has to rely on God for the rest. I've actually heard that from several surgeons.

Cath good

Heidi called to say that Tyler did great with his anesthesia and the pressures look good, so they'll do an echo and then plan on doing the Fontan on Wednesday. He got a suite in 7 East. Like old times. Good.

Pre-cath

Tyler got a blessing last night at Heidi's parents and it was good. All he wanted to do last night was play his DS, and it was getting pretty late. We were scheduled to leave for UCSF at 5:00 am, and Kira barfed at 3:00 this morning.

Tyler wasn't ornery when he woke up, as long as he had his DS. Heidi wanted him to take a little rest, but he said, "I'm not tired!" I convinced her to let him play the DS because he'll be sedated enough later today.

We made good time to the city and check-in was uneventful. He said, "Are they gonna cut my heart today?"

"No."

"Are they gonna cut it yesterday?" He gets yesterday and tomorrow mixed up.

"No."

"Am I gonna get a shot?"

"Yes, a little poke."

He didn't seem scared at that. He just acknowledged it and went back to the DS. Good old DS--the one time we are grateful for it. Thanks to all for your prayers!

Fontan

Tyler is off to UCSF for his single ventricle completion, the Fontan, next week. He will have a cath on Monday to make sure his pressures are good. After Fontan, blood must flow through the lungs without being pumped by the heart. Therefore children with high pulmonary vascular resistance may not tolerate a Fontan. If pressures look good he will have his fontan completion on Wednesday.

Children, like Tyler, with hypoplastic left heart syndrome have a single effective ventricle supplying blood to the lungs and the body. They are delicately balanced between inadequate blood supply to the lungs (causing cyanosis) and oversupply to the lungs (causing heart failure). The single ventricle is doing nearly twice the expected amount of work (because it has to pump blood for both lungs and body). When they are large enough, and the pressure in the pulmonary arteries are low enough, these children are referred for Fontan.

The Fontan is done in two parts. The first part was done when Tyler was 7 months. The first stage, also called a Bidirectional Glenn procedure and involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (e.g. a shunt created during a Norwood procedure, a patent ductus arteriosus, etc) is taken out and blood redirected. The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart. The second stage, also called Fontan completion, involves redirecting the blood from the IVC (inferior vena cava) to the lungs as well. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia, and leaves the single ventricle responsible only for supplying blood to the body.

The Fontan procedure is palliative, not curative. But in many cases it can result in normal or near-normal growth, development, exercise tolerance, and good quality of life. Patients will eventually require heart transplantation.

We feel so blessed that Tyler has made it thus far doing as well as he has done. The first 8 months were the hardest, at times, not knowing if he would ever make it to this stage. We know that our Heavenly Father has blessed us with this precious time for Tyler to be in our family and teach us and others so much about life, faith and hope.

Several people have asked what they can do. Prayers would be the best. We will be updating our blog during this time so you can see how Tyler is doing. Tyler turns 4 on September 4th and we are hoping he is doing well enough to celebrate in the hospital or even better at home. We will see how it all goes.

Weber, part 2

I watched my youtube videos to educate myself on how to barbecue.

Used the chimney to evenly prepare the charcoal

My marinated chicken breasts

Tyler's into saying "cheese!" for his photos

Scott doesn't like photos so much anymore

Roasting marshmallows. Mmmm, sugar!

For dinner tonight, I made some flour tortillas. They're super easy, cost effective, and fun for the boys. The recipe is one from cooks.com:

3 cups flour

1/3 cup oil

1 cup warm water

1 tsp salt.

Then I sauteed some garlic, onions and peppers, steamed some corn in the pressure cooker, and made fajitas with the barbecued chicken. It was nice.

Spiders

Woke up to these arachnids and the kids were intrigued.

Heidi wanted to spray them, but I think they are a good part of the ecosystem.

Tasty morsel.

The macro shots were from my little Canon powershot elph s410.

A toy

Tyler's Fontan is 8/24 with a preliminary cath on 8/22. Scott was telling Tyler, "They're gonna cut you open and you're gonna bleed!"

I was like, "Scott, knock it off."

Tyler pondered this and said, "Can I get a toy?"

"Yes."

Then Tyler sings, "Ha ha, Scott, I'm gonna get a toy!"

Not awesome

Tyler, Kira, Scott and I were jumping on the tramp at Pop's house yesterday. They put the nylon parachute tube in there and took turns being jumped in it. Once, I popped Tyler pretty high and he must have landed on his head because he shouted,

"Daddy, that was NOT AWESOME!"

I laughed and laughed.

Cub Scouts

I have entered the world of cub scouts as a committee chair (no idea what that really means). I am excited to learn something new and most importantly get to know all the cubscouts and their families. I think my job is staying organized which I am not good at and delegating which I like to do.

Yesterday was roundtable when all the leaders get together to plan and discuss the upcoming month and events. Scouting is an interesting world. There are people that are meant to be scouts. They entered the scouting world 40 years ago as a youth and are still in it. I love that. I love that they love what they do.

They start telling us we all need to go to wood badge (I think must be somewhere in the woods where you earn badges, tie a forward knot (hopefully its the knot I learned in 1st grade) and involve parents (YES! I can do that and understand the lingo!) So I left after 90 minutes because Danny was still at work at it was past 9PM. The church has gotten really good at condensing meetings but round table is not one of those meetings. Perhaps this is the round table way. I will tell you how the next one goes. Even better I will implement what I learned to involve everyone and send a different leader each month so we are all involved.

Weber

Finally got my barbecue! I was combing craigslist for months and found the 22.5" Weber grill and cover for a great deal. Mike and I picked it up and then on Saturday, we bought our food at Winco (a separate post is needed for Winco's greatness) and lit the charcoal.

Scott was interested in the new bbq.

The burgers were good. The corn was a fail. I wasn't as good at barbecuing as I thought. I should have watched my youtube videos before, because I didn't add enough charcoal and didn't position it correctly in the kettle. But I bought a charcoal chimney from wal-mart and now I'm prepared for the next round of barbecue. Also, we went to la Huasteca for some carne asada, but they had closed! D'oh!

After we ate, the boys and I put some wood in and roasted marshmallows. It was a good night.

Tie-Dye Project

For Spirit Week at Valley Vista the kids did Tie-Dye. Here they are at home rinsing the shirts and undoing the ties. Very fun and easy project!!

Kindergarten at Krey

Scott had his first day of kindergarten at R. Paul Krey (DDS) elementary. We all rode bikes to the school, met his teachers, and got him checked in. He was excited to be there, and I was glad, because I think I cried on the first day of school.

After a brief orientation, Tyler, Kira and I played on the swings while Heidi discussed administrative stuff for Tyler.

Brentwood has nice parks. We are happy to be here.