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!

Surgery

Aaargh matey! I love this picture of Asher! Cracks me up everytime I see it.

Well, our gut feeling that Asher isn't doing well was confirmed today. We met with Dr. Puchalski this morning. Little Asher isn't doing well because his heart function has decreased; a result of the leaky pulmonary valve. So, rather than doing an MRI in October, which will just tell us what we already know, we are going to schedule Asher for surgery in September and have an echocardiogram done beforehand.

Surgery will be open heart again, done here at Primary Children's. They will be replacing the conduit and valve which were placed at Stanford. Recovery should take 3-5 days. Then, we will try to piggy-back his skin graft surgery on the same hospital stay. Unfortunately, it can't be done at the same time as the heart repair (they use different anesthesia for it).

How are we doing with all of this? Quite frankly we are relieved. We've known since April he had a severe leak, so it was just a matter of time before he needed surgery. And for quite a while now we've known things weren't quite right with Asher. So, we put our trust in the capable hands of the surgeons, and look forward to Asher feeling much better after he gets his heart repaired (again).

In the next day or 2 we will be getting a call from cardiology to schedule surgery and the echo; I will post again as soon as we have a date. Hopefully it doesn't ruin Jon's birthday again this year! We already have tickets to take him to the circus on the 22nd; a surefire way to have our plans messed up. We love our little Asher, but he has a thing for birthdays! He was born on mine, had his first surgery on Taylor's, we left for his second surgery on Jon's, and he cut his finger 2 days before Jacob was born. We are crossing our fingers Jon gets to enjoy his birthday this year with his whole family!

In other news, Asher woke up from his afternoon nap today running a fever, and he was very lethargic. He had zero interest in anything other than sitting on daddy's lap. So I called his pediatrician, and he agreed that I should bring him in. So, after checking Asher out, he discovered little red bumps on his feet, then his hands, and in his mouth. They were literally appearing as we were sitting there. Yep, hand-foot-mouth disease. You've got to be kidding! Asher is now on quarantine until this clears up. Yuck. Okay, off to take care of my grumpy little man.

Quick Update on Asher

Well, the adjustment to four kiddos has been a "wee" bit difficult. I feel like I am constantly changing diapers, cleaning up spills, and feeding kids. My sister-in-law, very much a super mom who seems able to do it all, watched the 3 boys the other day while Adam and I went out to lunch. When we went to pick them up, the first thing she said was "How do you get ANYTHING done?". Which is pretty much how I feel every day. I can barely keep dishes done and laundry clean- forget about updating my blog!

Nonetheless, I have felt very guilty about my poor, neglected blog. I'm working on a few posts about our summer, but felt like I should update quickly about the latest with Asher. Remember, a little over amonth ago, how he bit his finger and had stitches? And then it got infected? Well, we've been following up with a hand specialist weekly. And last week, we found out that his finger isn't healing properly. The skin has contracted, causing the tip of his finger to bend at what appears to be almost a 90 degree angle. Poor guy, it has to be painful. So, now Asher needs to have skin graft surgery to repair it, so that his finger can straighten back out. Uugh. No date yet for that, we are waiting for a minor infection in the finger to clear first.

In other news, we have an appointment to see Asher's cardiologist on Monday. We were scheduled to see him October 13th, but needed to bump it up. We have noticed for a while that Asher has been sleeping A LOT. About 16 hours a day, minimum. And he has been sweating A LOT, especially from his head, and when he is eating/sleeping/playing. And for the past few weeks, he has been a grumpy boy. We still see happy Asher, but grumpy Ash is replacing him more and more. So, I broke down and called cardiology this week, and his doctor wants to see him at his soonest available appointment. So, Monday we should have some answers about what is going on, and I will update as soon as I can. That's all for now! Baby calls.

Jacob's Photo Shoot

I finally managed to take some time to have a little photo shot with Jacob. However, I had very bad timing, and just as I got the area set up, Asher woke up and Daddy came home. Relative chaos ensued, but I was determined to take some pictures! So, Daddy wrestled the kids and I started my photo shoot. I fed little Jakey first, hoping he would fall asleep (like he ALWAYS does). No such luck. He was WIDE awake. Oh well, that just means we get to see his big eyes in the pics. He would not sit still, either. AND he decided to pee not once, not twice, but THREE times. I had his diaper off, thinking I'd get some cute pics of him on his tummy. He had other plans, and kept leaping like a little frog when he was placed on his tummy with his knees tucked up. So, I have lots of pictures of his cute little face, and that's about it. Oh well- it's better than nothing! Enjoy:

Pic's and a Quick Update

I've been busy in new baby land- starting to get my life back! I still haven't managed to take "real" pictures of Jacob, but here is a shot I got of him on the couch the other day:

Last night we went to a neighborhood barbecue. When we got hom, the lighting was gorgeous, so I grabbed Taylor and snapped a few shots. She can act a bit goofy when I take her pictures, but I got a couple of decent ones:

In other news, Asher saw the hand surgeon today (again) about his cut on his finger. We saw him last week, and he wasn't very optimistic about how it was healing. His tendon and fat tissue were completely exposed, plus we weren't wrapping it correctly. A week later, and it is healing much better. Still looks like a nightmare, of course, but there is no more infection, he doesn't need to be on antibiotics anymore, and the tendon is no longer exposed. So, assuming things keep healing like this, we won't need to see the hand surgeon again. Yay!

Also, I scheduled his next Cardiology appointment today. October 13th is the big day. He will need an MRI beforehand, but I have to wait for them to get insurance authorization and then they will call to schedule that. A bit nervous about this next visit- I think his next surgery will be seriously discussed this go-round. But we will cross that bridge when we come to it; I think I'll be too busy changing diapers to even think about worrying!