Yet Another ER Visit!

SO, I realize I have been less than stellar at updating the blog. Sorry! The latest with Asher is this:

Last Wednesday he woke up purple. Now, Asher usually wakes up with purple feet, which goes away in 30 minutes or so. And when he gets a little cold, like after a bath, or swimming at the pool, he turns purple, but that will go away also (usually 1-2 hours of warming him up). But he woke up Wednesday, not cold, and purple. Which lasted 2 hours. And his capillary refill was over 5 seconds (normal is less than 2). So, we decided he needed to be seen by the pediatrician. I headed in, and although his oxygen saturation was great, his doctor was concerned. He called cardiology, and they had us head to Primary for a chest x-ray. In between leaving the pediatrician and having the x ray done, Asher also became very lethargic and kicked up a fever. I came home from Primary at 1pm, and he had a fever of 101.4. So, I called the pediatrician to let him know, and see what the x ray looked like. The x ray was fine, and he had me start Ash on Tylenol for the fever. Asher slept most of the afternoon. By 6 pm, he had a fever of 103.2 (no other symptoms AT ALL), so I called the pediatrician AGAIN (yes, I have his home number also). At first he wanted to see Ash in the morning, but then decided we should head to the ER and have them do a blood culture and blood count. Fun. We packed our bags, left kids with daddy, and headed out. One of the perks of a heart kiddo, is you don't have to wait at the ER, they get you right into a room! But, you still have to wait for tests and what not. By midnight-ish, they felt they should keep us overnight. Ash's white blood cells were low, and there was a high turnover of immature blood cells, which signals an infection in the body. We didn't get settled in until 3 am- and then we were up at 6:30 am. Uuggh. And sleeping on a hospital cot while 7 1/2 months pregnant is not fun. Thursday consisted of more tests, and an echo cardiogram. Oh- and Adam and the kids visited for a good chunk of the day. The echo was much the same as his last one in April- still a severe leak, but not much more. His main pulmonary artery (the part they replaced in September) is stenotic (narrowing), which is new. But none of this would cause his symptoms. So, they also ordered some blood tests to check for infection in his heart (which an echo wouldn't show). We discussed his purple spells, and the cardiologists felt that it had to do with his poor circulation, and the fact that when Ash had his surgery, they left a hole open in his atrium (didn't know that!), which allows his blood to mix more than normal, resulting in more purplish blood. However, they would like us to get a pulse oximeter for home, so we can monitor him when he has these spells.

Back to the fever- it was still happening Thursday whenever the Motrin wore off, so we had to stay Thursday night as well. By Friday, they decided it was more than likely a virus causing it, since all of his blood work was coming back negative (no infection in the heart-phew!). SO, although a few tests results were still pending, they let us go home. He still had a fever Friday, but by Saturday all was well.

Also, the doctors noticed that Asher's height and weight have remained the same since April. With the problems in Asher's heart, his heart has to work a lot harder all the time. Basically, his heart is constantly beating the same as if you or I were out jogging. They decided we need to put him back on formula, and concentrate it more, and add more calories to everything he eats. As in, put butter on EVERYTHING. They are giving Asher a diagnosis of "failure to thrive". Yay.

Welcome to the world of heart kids- a simple virus with a fever lands you at the hospital for 2 1/2 days, and gets you a diagnosis of "failure to thrive" (I really dislike that term)!

On a side note, when the kids came to visit, Jon kept asking for Dr. Jen. She was the resident that was his Dr. when he was hospitalized with a staph infection. Thursday afternoon we found a cardiology resident who knew Dr. Jen, and she had her paged. Unfortunately, Jen was in clinic that day, and couldn't visit. Friday the kids weren't at the hospital, but Jen came to visit, camera in tow, hoping to see her favorite "batman" patient. She even gave me a big hug when she saw me. She said next time I'm there with Jon I need to have her paged so she can see him. I love Primary's soo much! Their Dr's and nurses are the best.

So, now it is almost a week later. Ash is doing well,no more fevers or mystery purple spells (just when he goes swimming) and we need to see the pediatrician to see if he has gained any weight since we've switched up his diet. We also just got back from a trip to Moab (we left Father's Day), which I will update on tonight/tomorrow.

Summer!

Summer is here! Kids are done with school, and the weather is (finally!) warming up.

The kids have pulled out the chalk, and are decorating all the concrete they can find! This is what Taylor did when I asked her to clean up the chalk the other day. Not quite what I meant, but a very artistic way of arranging them!
I had some work to do today, taking pictures of houses. But I just couldn't keep the kids in the car all day! It is far too gorgeous out, so we stopped at a park on the opposite side of the valley and had a picnic and played. Asher LOVED the swing!

Check out the hair! Blowing in the breeze- Daddy doesn't want to cut it. He says he lives out his hair fantasies through our boys.

South Jordan has some of the best parks! This one was full of different rope structures for climbing, right next to the lake. Parks were so lame when we were kids!

It was a great day, we even squeezed in a visit with Dad at work. Now it's time to do the mad dash cleaning before he comes home!

Grafton Ghost Town

On our second day in St. George, we decided to take the kids to a ghost town, before heading to Zion National Park. It was Jonathan's favorite part of the trip! On the way to Zion from St. George, you pass through several small little towns. One little town is Rockville. In Rockville, there is a small sign that says "Grafton" with an arrow. You drive down a small little road, through a neighborhood, and pass over a bridge. Then you take a dirt road for several miles, and you swear you must be going the wrong way. Keep going until the road ends, and you are at Grafton. It's a small collection of old homes, a cemetery, and a church/schoolhouse. It's all that remains of a town founded in 1859, and flooded twice. The last residents left in 1944. It was a really neat little detour!

One of the old homes. Unfortunately, you couldn't get inside.
The dirt road in.

Another home. We hopped the fence at this one, and since it was wide open, Adam and the kids took a peek around. Shh! Don't tell anyone!

The schoolhouse/church.

Cute kids!

Silly kids! This was the best shot.

Another home. This one had a large fence preventing us from poking around anymore.

Batman!

Screwed up the editing on this one. Oops!

One of the old wooden headstones at the cemetery.

A really neat old house, off the beaten path, on private property we TOTALLY were not supposed to be on. We're a bunch of rule breakers!

Lots of fun, and I got some really neat pictures (I think!). Next post: Our MAJOR hike in Zions.

St George Trip Day 1, and Fun with Locked Vans!

First of all, Asher is doing much better. We were on the verge of taking him to the ER Sunday night-for dehydration- and then at 3 am he finally decided he would drink pedialyte. By 9 am, he had taken in 9 ounces of fluids, and peed for the first time in over 24 hours! Yay! He's been drinking pretty regularly today, and is peeing regularly, so we seem to be getting over the worst of it. His tummy is still upset- but not nearly as bad as it was.

Here are some pics from our first day in St. George. We desperately needed a vacation, so we went and stayed at Adam's sister's 2nd home there for a few days. It was so nice to just have a break from everything!

Our first day there, we went to breakfast at the Bear Paw (great food- but a little pricey for breakfast!). Then, we walked around downtown, and the kids had a blast at this park in the middle of the city.

Taylor posing on the waterfall

Daddy splashing Asher. The water so shallow, it was great for Asher to splash around in.

Synchronized splashing from Tay and Jon

Adam and Tay catching some sun

Silly Jon trying to catch the water in his shorts. Goofy boy!

I love how I managed to catch Tay mid-air here!

Another neat water feature downtown, across from the Bear Paw.

After all the fun downtown, we went back to the house. The kids (and Adam!) all napped, and I did some grocery shopping. Then grilled hot dogs for a late lunch, and we just hung out for the rest of the day. I will post more about the trip as I finish editing photos.

Oh, one last thing. My adventure for today! I came home this afternoon after running errands with the kids. I brought Asher in, and Tay and Jon trailed in after. A little later I went out to the garage, and noticed a light on in the van. Hmmm.. I go to open the door to turn it off, but the door is locked. Uh Oh. Where are the keys? On the dashboard. Do we have a spare? Heavens no. After talking to the kids, I learn that Taylor locked the van as she got out, so that Jon couldn't get back in and play in it. Nice idea, if the keys hasn't been inside. So, I talked to her about never, ever locking the van, and then proceeded to try and unlock it. Not Fun. Thankfully, the passenger door wasn't shut quite all the way (thus the interior light was on), so I was able to wedge a coat hanger into the crack. Now the really fun part! Getting the little loop of the coat hanger hooked under the toggle so I can lift it up to unlock the door. After a lot of failed attempts, and giving up for awhile so I could tuck the kids in bed, success! I am proud that I was able to do it myself, but we will be getting a spare key made tomorrow!

Gardening!

Yes, I know, it's been awhile. I'll try to play catch up this week! (But don't hold your breath). We've been busy around here with gardening, a vacation to St. George, and birthdays- posts and pics soon to follow.

An update on Asher- no big news, he is standing a lot more now, and is just about ready to walk (he's taken a few steps here and there). He walks well when we just hold one of his hands, so I'm sure he'll be walking alone soon. We have switched him off of dairy and onto almond milk and- miracle!- no more ear infections and he sounds a lot less "junky" when he breathes. He STILL weighs just 18 lbs 8 oz. That is his new favorite weight. But I'm thinking it will drop now, since he is SICK. Uuggh. Poor guy has the runs, and is throwing up (but no throw up today!). He is not a happy camper at all. We are just focusing on keeping him hydrated and trying to avoid the hospital. Wish us luck!

Silly Asher digging in the garden. He seems to thoroughly enjoy eating dirt- oh well.

Batman/Jonathan trying to help remove a root from the garden.


Adam having fun with the tiller.

So the garden became quite the project this year. We tilled the whole plot, and I planted all our seeds. Then, a week later, we decided to rip down that fence with the gate in the picture above. It threatened to blow down all winter, so we decided to just get rid of it. Plus, it blocks a lot of the west sun from the garden, which is not a good thing. In hindsight, we should have taken out the fence first, because my beautiful, fluffy, planted garden got trampled in the process. Then, a week after taking out the fence, and and some neighbors decided to expand the garden west, and hand dug and removed all of the rocks, roots, plants, etc. from that area. What a project! More trampling of the garden was done, but it gave me room to plant squash, pumpkins, melons, eggplant, and more tomatoes. And the soil was so nicely aerated after all of their digging! Things are starting to sprout now in the trampled section of the garden, so I think all will be well. I'll post pics once things really get going! Okay- off to tend to sick Ash.

Update on Asher's Heart

Okay- so Asher had his Cardiac MRI done April 20th, and we saw Dr. Puchalski on the 26th for a check up and to go over the results of the MRI. We were hoping for good news- everything functioning fine, no leaks, no narrowing of arteries, etc. Well.. we didn't get that, though things are not so serious that he needs surgery right away, either.

Asher's right lung is receiving 66% of the blood from his heart, through his pulmonary artery, while his left lung is only receiving 34% of the blood. Ideally, it should be about 50/50. Why is this happening? Nothing was evident on the MRI- his cardiologist was expecting to see narrowing in the left branch of the pulmonary artery, but there is none. All of the lobes of his left lung are getting blood. So, it's possible that some of the really tiny branches of the artery are narrowing, but there is nothing they can do surgically to change it.

Asher's pulmonary valve (the one placed in his surgery at Stanford, since he didn't have one at birth) has a sever leak, about 50%. This is not good news, it means that valve is already going bad, and will need replacement sooner rather than later. We were hoping it would last at least 3 years, but that isn't going to happen. His right ventricle is also enlarged, and function is slightly down, though not to a point where surgery is required.

So, not a great appointment, though it could be worse. What this all means is that we will have another MRI done in 6 months, and see how things have changed at that point. More than likely, a surgery date will be talked about. I would be surprised if we made it over a year from now before he has surgery again. Surgery would be open heart, at Primary Children's (yay! no trip to Stanford!), and would consist of replacing the pulmonary valve, and trying to get more blood flowing through the pulmonary artery to the left lung.

Looking at Asher, you would have no clue anything was wrong. He is small for his age (his height isn't even in the charts, and he is only in the 3% for weight. No football or basketball for him!), but he looks GREAT. He is active, learning to stand and walk, and never stops moving. He babbles constantly, loves dropping things and saying "uh-oh", and calls everything he really wants (bottle, food, toys) "daddy". He has even managed to stay healthy lately! But his little heart just struggles. We are just blessed, and grateful, that they can fix his heart, and that we can stay here in Utah for the next surgery, and we are grateful that it doesn't have to happen right away.

Tulip Festival!

I have been a tad bit behind on posting, but I have decided today is catch up day! 2-3 weeks ago I went to the Tulip Festival at Thanksgiving Point in Lehi. I brought the kiddos and met up with my parents and Grandma, and my niece Nyah. It was a bit early for the tulips, since we've had a really cold Spring, but still about 50% of them were blooming. (The pic above is Taylor and Nyah- I love it! So typical of these two when they are together.)
Asher playing with Grandma Cheryl

Taylor posing. Right after this she started bawling- I can't remember why now! Probably because I didn't like a pose she did or something.

Taylor bundled up, looking at the flowers.

Jonathan, Nyah, and Taylor. Check out all those flowers!

It was a really nice day, despite the cold. It would great to go back now that everything is actually blooming!