Thursday, June 30, 2011
We're Home!!!
Levi was discharged yesterday and now we're home!!! I'll write more later today, but it feels SO good to be home. Time to decompress. Levi's doing great!
Tuesday, June 28, 2011
Post-Op Day 4 & Discharge Tomorrow?
Today was a very busy day and there's talk of being discharged tomorrow morning. First thing tomorrow, Levi will have another chest x-ray and we'll find out the results of the echo he had today. Assuming everything looks good, we'll be discharged and able to fly home as early as Thursday. Wow, that was fast!
Accomplishments today:
- had an EKG
- got that uncomfortable chest tube out and one stitch put in
- pacing wires removed from chest
- had a chest x-ray
- bandage removed from incision site
- mildly sedated echo (he threw up the oral sedation, so instead of sleeping, he was just dazed)
- fasted for several hours in preparation for the sedated echo
- more wagon rides!
- lots of blood pressure readings - he does not like those
Levi looks good overall and like I said, they'd like to discharge him tomorrow. One thing they are still watching is his heart rate. It's a bit on the high side, trending up in the 170s at times when awake. They don't have an explanation for that yet, and it's being discussed amongst the team. Because everything else looks good, they're not especially concerned just yet. I'm hoping we get some more answers for that in the morning though.
It was a busy day and Levi is still short on sleep. I'm hoping he sleeps really well tonight.
Thanks for your continued prayers and support! Many blessings have come out of this whole crazy experience.
Accomplishments today:
- had an EKG
- got that uncomfortable chest tube out and one stitch put in
- pacing wires removed from chest
- had a chest x-ray
- bandage removed from incision site
- mildly sedated echo (he threw up the oral sedation, so instead of sleeping, he was just dazed)
- fasted for several hours in preparation for the sedated echo
- more wagon rides!
- lots of blood pressure readings - he does not like those
Levi looks good overall and like I said, they'd like to discharge him tomorrow. One thing they are still watching is his heart rate. It's a bit on the high side, trending up in the 170s at times when awake. They don't have an explanation for that yet, and it's being discussed amongst the team. Because everything else looks good, they're not especially concerned just yet. I'm hoping we get some more answers for that in the morning though.
It was a busy day and Levi is still short on sleep. I'm hoping he sleeps really well tonight.
Thanks for your continued prayers and support! Many blessings have come out of this whole crazy experience.
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| finding forms of entertainment |
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| our friend Beth, one of the superstars who helped make this week a little easier |
Monday, June 27, 2011
Post-Op Day 3
Levi is out of the CVICU! He is now in his own room in 3-West. Instead of having a nurse stationed at his bedside, the nurses are outside in the hall and help as needed. Each nurse has three or four patients. We're thrilled that we have our own room now! It's quieter and hopefully Levi can get some much needed rest.
Levi is making good progress. At rounds today, the doctors said Levi was still looking very good from a heart and physical standpoint. He had to keep the chest tube in for one more day, but they hope to get it out tomorrow. I really hope that's the case! It just looks so uncomfortable and makes mobility that much harder.
Levi is behind on his sleep, so I'm hoping he does some catching up tonight. And speaking of sleep, I need to get some too, so good night!
Levi is making good progress. At rounds today, the doctors said Levi was still looking very good from a heart and physical standpoint. He had to keep the chest tube in for one more day, but they hope to get it out tomorrow. I really hope that's the case! It just looks so uncomfortable and makes mobility that much harder.
Levi is behind on his sleep, so I'm hoping he does some catching up tonight. And speaking of sleep, I need to get some too, so good night!
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| More wagon rides! His very favorite activity. |
Sunday, June 26, 2011
Post-Op Day 2
Levi's sleeping right now while my aunt is with him, so I'm getting some fresh air in one of the many garden areas at LPCH. I love that there are so many places we can go to escape the hospital room. It's really a beautiful campus.
Levi slept most of last night, which is good. When he awoke this morning, he had a hard time settling down. James was with him at that point and after trying several things to calm him, one of the nurses suggested a wagon ride. Bingo. As long as he was moving, he was quiet. I arrived just in time to see our sweet boy sitting up in his wagon. Of course, along came all of the medical equipment too, but it was great to see him out of bed.
After the wagon ride he settled back in bed for a short nap. When he woke up he was not happy. I think he was still tired. So we took turns holding him, singing to him, and turned on the Princess and the Frog. He just wasn't feeling great I think and was still really tired. Finally, after some more Tylenol and Toradol for pain relief, he settled down to sleep in his crib. He wasn't very interested in eating much this morning, but hopefully once he wakes up rested we can try giving him real food like bananas, yogurt, and Cherrios.
During rounds this morning, the doctors said everything is still looking good. He still has to keep his chest tube in for at least another day though, since the drainage wasn't below the level for pulling it out. He does get the line in his neck out today, so that should make him feel a little better. They also decided he should spend another day in the CVICU before moving up a floor. They thought it'd be better to move on a Monday than a Sunday, due to rooms and staffing. The doctors' main focus now is keeping Levi in a good mood...finding forms of entertainment, food, etc.
So, all is going pretty well. The whole one-year-old in a hospital setting is still tough though. Hopefully he'll continue to perk up, feel better, eat more, and be in a good mood.
Afternoon update:
Levi went for another wagon ride with James and the nurse and they went outside on the patio! Levi ate part of a popsicle, his first one ever, and part of a yogurt. The nurse taught him how to say "brrrr" and shake his head. She's really sweet and Levi is seriously in love with her. He puts his blanket over his head and brings it back down to play peek-a-boo with her and she had him giggling and smiling many times. It's hard to believe it's been just over 48 hours since his open heart surgery.
I thought I'd give you bit of a photo tour of where we are...
Levi slept most of last night, which is good. When he awoke this morning, he had a hard time settling down. James was with him at that point and after trying several things to calm him, one of the nurses suggested a wagon ride. Bingo. As long as he was moving, he was quiet. I arrived just in time to see our sweet boy sitting up in his wagon. Of course, along came all of the medical equipment too, but it was great to see him out of bed.
After the wagon ride he settled back in bed for a short nap. When he woke up he was not happy. I think he was still tired. So we took turns holding him, singing to him, and turned on the Princess and the Frog. He just wasn't feeling great I think and was still really tired. Finally, after some more Tylenol and Toradol for pain relief, he settled down to sleep in his crib. He wasn't very interested in eating much this morning, but hopefully once he wakes up rested we can try giving him real food like bananas, yogurt, and Cherrios.
During rounds this morning, the doctors said everything is still looking good. He still has to keep his chest tube in for at least another day though, since the drainage wasn't below the level for pulling it out. He does get the line in his neck out today, so that should make him feel a little better. They also decided he should spend another day in the CVICU before moving up a floor. They thought it'd be better to move on a Monday than a Sunday, due to rooms and staffing. The doctors' main focus now is keeping Levi in a good mood...finding forms of entertainment, food, etc.
So, all is going pretty well. The whole one-year-old in a hospital setting is still tough though. Hopefully he'll continue to perk up, feel better, eat more, and be in a good mood.
Afternoon update:
Levi went for another wagon ride with James and the nurse and they went outside on the patio! Levi ate part of a popsicle, his first one ever, and part of a yogurt. The nurse taught him how to say "brrrr" and shake his head. She's really sweet and Levi is seriously in love with her. He puts his blanket over his head and brings it back down to play peek-a-boo with her and she had him giggling and smiling many times. It's hard to believe it's been just over 48 hours since his open heart surgery.
I thought I'd give you bit of a photo tour of where we are...
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| LPCH |
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| One of the beautiful gardens here. |
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| This is where I like to sit for breaks and blog updates |
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| Our home away from home, the Cardiovascular Intensive Care Unit |
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| The waiting area just outside the CVICU. This is where we waited just before seeing Levi for the fist time after surgery. |
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| asleep with Elephant |
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| first wagon ride - morning |
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| still a bit groggy, but enjoying the ride |
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| holding Levi for the first time |
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| Hurray for visitors! |
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| Look, I can sit up! I really do like it, even though it doesn't look like it. |
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| Afternoon ride in the CVICU |
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| Can we go out there yet? |
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| Things are getting better each day. |
Saturday, June 25, 2011
Post-Op Day 1
Levi is doing pretty well today. Heart wise everything is looking good. His stats are as they should be, with the exception being when he is agitated his blood pressure spikes and his oxygen levels decrease. But as soon as he calms down, everything goes back to normal.
Last night James was with him much of the night. He was extubated without any problems around 1:00 am, but had a hard night as he was quite uncomfortable and thrashing around. The biggest challenge right now is finding a good combination of sedation and pain killers that work for him. As of 7:30 am this morning he finally settled down and took a decent nap. He woke around 10:30 am and has been in and out since then. He is also already drinking from a sippy cup, holding it by himself.
The nurses are starting to pull some of his lines, so that should help with comfort as well. He will continue to have a line in his neck for medications and blood draws, but the one in his right arm is being taken out soon. This will allow him to suck his thumb, which will hopefully help him soothe himself. He has one chest tube which will stay in at least another day. I've been told this is usually very uncomfortable for kids, so it will be nice when that's gone.
Other than Levi's restlessness, he's stable and doing well. This morning during rounds the doctors even mentioned Levi may be ready to move out of the cardiovascular intensive care unit (CVICU) as soon as tomorrow. Then he will recover in what's called "3-West". Instead of having his own nurse, like he does now, he'll share one and will be more on his own, with just James and me. I'm a little nervous about that, but we'll see how it goes.
My aunt Jani is up helping and visiting right now. It's been wonderful having her here for support, especially since we're so far from home.
Going back to yesterday's surgery, here are a few more details. After surgery yesterday, Dr. Hanley stopped by the waiting area to explain how surgery went. He drew a diagram of a normal aortic valve which has three leaflets that open and close. Levi was born with a bicuspid valve instead, having only two leaflets. One of those two leaflets was comprised of two cusps fused together at about the 80%, 20% mark.
When Levi had the balloon valvulopasty catheterization procedure at two days old, the balloon opened up his narrow valve, but it also destroyed that 20% part of the leaflet that I mentioned before. Blood was then allowed to flow better through the valve, but that's also where the leakage then occurred.
So, yesterday, Dr. Hanley took a piece of the sac that surrounds Levi's heart, the pericardium, and sewed in that missing portion of the leaflet. On a scale of 1 to 10, before the repair, the leakage was a 9, very severe. After the first attempt at repair it was brought down to a 3. Levi was taken off the heart and lung machine, his heart was restarted and Dr. Hanley checked the repair. Seeing it at a 3, Dr. Hanley decided to see if he could fine tune the repair to make it even better. Levi was put back on the heart and lung machine, and his valve was worked on again. When tested a second time, the leakage was at a 1, which is mild. When leakage is lessened, usually it makes the valve stenosis (narrowing) a little worse, so it's a fine balance. The narrowing went from a 2 to a 2.5 after the surgery, still considered mild. For those of you familiar with gradients, it went from a gradient of 15 to 18. Dr. Hanley was very happy with the results. So now Levi has a functioning bicuspid valve that will grow with him. Will he need a valve replacement down the road? Yes, most likely, but this could get him a number of years before that's needed. Is there a chance that it could fail sooner rather than later? Yes, but Dr. Hanley feels really good about this repair, so hopefully it holds steady for a long time.
While Dr. Hanley was in there he also removed some extra tissue from both below and above Levi's aortic valve that was also causing some blockage. He then repaired the dilated ascending aorta.
A huge weight was lifted off of us when Dr. Hanley shared the good news with us. We were so thoroughly happy and thanked him as best we could. We praised God for his hand in all of this.
So now, we focus on helping Levi recover as best as he can. It's tough going through something like this when you're one. Big enough to know what you like and don't like, but not old enough to talk or understand why this is happening. The nurses and doctors have been fantastic though and are helping Levi and our family through this.
Thank you all for your notes of encouragement and your many prayers. We appreciate them more than you know.
Last night James was with him much of the night. He was extubated without any problems around 1:00 am, but had a hard night as he was quite uncomfortable and thrashing around. The biggest challenge right now is finding a good combination of sedation and pain killers that work for him. As of 7:30 am this morning he finally settled down and took a decent nap. He woke around 10:30 am and has been in and out since then. He is also already drinking from a sippy cup, holding it by himself.
The nurses are starting to pull some of his lines, so that should help with comfort as well. He will continue to have a line in his neck for medications and blood draws, but the one in his right arm is being taken out soon. This will allow him to suck his thumb, which will hopefully help him soothe himself. He has one chest tube which will stay in at least another day. I've been told this is usually very uncomfortable for kids, so it will be nice when that's gone.
Other than Levi's restlessness, he's stable and doing well. This morning during rounds the doctors even mentioned Levi may be ready to move out of the cardiovascular intensive care unit (CVICU) as soon as tomorrow. Then he will recover in what's called "3-West". Instead of having his own nurse, like he does now, he'll share one and will be more on his own, with just James and me. I'm a little nervous about that, but we'll see how it goes.
My aunt Jani is up helping and visiting right now. It's been wonderful having her here for support, especially since we're so far from home.
Going back to yesterday's surgery, here are a few more details. After surgery yesterday, Dr. Hanley stopped by the waiting area to explain how surgery went. He drew a diagram of a normal aortic valve which has three leaflets that open and close. Levi was born with a bicuspid valve instead, having only two leaflets. One of those two leaflets was comprised of two cusps fused together at about the 80%, 20% mark.
When Levi had the balloon valvulopasty catheterization procedure at two days old, the balloon opened up his narrow valve, but it also destroyed that 20% part of the leaflet that I mentioned before. Blood was then allowed to flow better through the valve, but that's also where the leakage then occurred.
So, yesterday, Dr. Hanley took a piece of the sac that surrounds Levi's heart, the pericardium, and sewed in that missing portion of the leaflet. On a scale of 1 to 10, before the repair, the leakage was a 9, very severe. After the first attempt at repair it was brought down to a 3. Levi was taken off the heart and lung machine, his heart was restarted and Dr. Hanley checked the repair. Seeing it at a 3, Dr. Hanley decided to see if he could fine tune the repair to make it even better. Levi was put back on the heart and lung machine, and his valve was worked on again. When tested a second time, the leakage was at a 1, which is mild. When leakage is lessened, usually it makes the valve stenosis (narrowing) a little worse, so it's a fine balance. The narrowing went from a 2 to a 2.5 after the surgery, still considered mild. For those of you familiar with gradients, it went from a gradient of 15 to 18. Dr. Hanley was very happy with the results. So now Levi has a functioning bicuspid valve that will grow with him. Will he need a valve replacement down the road? Yes, most likely, but this could get him a number of years before that's needed. Is there a chance that it could fail sooner rather than later? Yes, but Dr. Hanley feels really good about this repair, so hopefully it holds steady for a long time.
While Dr. Hanley was in there he also removed some extra tissue from both below and above Levi's aortic valve that was also causing some blockage. He then repaired the dilated ascending aorta.
A huge weight was lifted off of us when Dr. Hanley shared the good news with us. We were so thoroughly happy and thanked him as best we could. We praised God for his hand in all of this.
So now, we focus on helping Levi recover as best as he can. It's tough going through something like this when you're one. Big enough to know what you like and don't like, but not old enough to talk or understand why this is happening. The nurses and doctors have been fantastic though and are helping Levi and our family through this.
Thank you all for your notes of encouragement and your many prayers. We appreciate them more than you know.
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| Post-Op Day 1 with his Great-Aunt Jani |
Friday, June 24, 2011
Pics of Levi Post-Op
It's been a long day, but I wanted to post a couple pictures from after surgery. Levi continues to be closely monitored, but is doing well. The talk is about extubation right now. Maybe late tonight or tomorrow. The nurses are trying to keep him comfortable with sedation and painkillers. So far so good.
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| Our first time seeing him. We thought he looked pretty good considering what he'd been through. |
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| all of the medications Levi is on |
SUCCESSFUL REPAIR!!!
Dr. Hanley successfully repaired Levi's aortic valve and ascending aorta!!! On a scale of 1-10, Levi's leakage was a 9 going into surgery and now it's a 1. On a scale of 1-10 Levi's stenosis (narrowing) was a 2 and is now a 2.5, which the surgeon isn't concerned about. He was very happy with these results. More details to come. We're going to see Levi now.
Surgery Day - June 24
Update #2 - 10:15 am
We just met with Dr. Hanley. He was kind and confident. A good combination. He explained the procedure options. He said he gives Levi's valve about a 50-50 chance of being repairable. Otherwise it's a more complicated Ross procedure. He said he'd be starting in just a few minutes...after he grabbed a quick bite to eat in the cafeteria next door. James half-jokingly offered to buy him a coffee. With a smirk, he declined, saying coffee makes him "jittery."
Levi is in the best of hands. I'm starting to feel a little more calm. Reminding myself God is in control and loves Levi so much. This is out of my hands and into his.
I'll post another update when we know more.
Update #1 - 8:35 am
I still can't believe today's the day. I think it will hit me hardest when I see Levi for the first time after surgery. It's been a roller coaster of a week. It took so much just to get to the point of being here. And now it just seems so weird to be sitting quietly at a table on the hospital patio with James. Just the two of us. I don't want to let my mind wander too far from this table. I don't want to think too much about what's happening with Levi. So I'll just take things as they come.
It's 8:35 am right now. We arrived at 6 am this morning, checked in, and waited for the anesthesiology team to come. When the team arrived it was an international team of four ladies. They took us through what would be happening to Levi today, then gave him some Versed orally, and he quickly went to la-la land, still awake but much happier and woozy. We both gave Levi a hug and kiss, said we loved him, and handed him over to the anesthesiologist. I cried. Then two nurse liaisons showed us to the waiting area where we received a pager for updates. We're now waiting for Dr. Hanley to stop by the waiting area to talk to us before he enters the operating room. Depending on what exactly needs to be done during surgery, it can take anywhere from 6-8 hours. Once Dr. Hanley looks at Levi's heart, he will decide if the aortic valve needs to be repaired or replaced. He will also inspect Levi's aorta to see if it needs to be repaired.
I will continue to update the blog as we have more news. Much love to everyone. Thank you for lifting us up in prayer on this difficult day. Levi is a strong little boy and God is in total control.
Here are some pictures from the last couple days and one video. Levi started walking so much yesterday!
We just met with Dr. Hanley. He was kind and confident. A good combination. He explained the procedure options. He said he gives Levi's valve about a 50-50 chance of being repairable. Otherwise it's a more complicated Ross procedure. He said he'd be starting in just a few minutes...after he grabbed a quick bite to eat in the cafeteria next door. James half-jokingly offered to buy him a coffee. With a smirk, he declined, saying coffee makes him "jittery."
Levi is in the best of hands. I'm starting to feel a little more calm. Reminding myself God is in control and loves Levi so much. This is out of my hands and into his.
I'll post another update when we know more.
Update #1 - 8:35 am
I still can't believe today's the day. I think it will hit me hardest when I see Levi for the first time after surgery. It's been a roller coaster of a week. It took so much just to get to the point of being here. And now it just seems so weird to be sitting quietly at a table on the hospital patio with James. Just the two of us. I don't want to let my mind wander too far from this table. I don't want to think too much about what's happening with Levi. So I'll just take things as they come.
It's 8:35 am right now. We arrived at 6 am this morning, checked in, and waited for the anesthesiology team to come. When the team arrived it was an international team of four ladies. They took us through what would be happening to Levi today, then gave him some Versed orally, and he quickly went to la-la land, still awake but much happier and woozy. We both gave Levi a hug and kiss, said we loved him, and handed him over to the anesthesiologist. I cried. Then two nurse liaisons showed us to the waiting area where we received a pager for updates. We're now waiting for Dr. Hanley to stop by the waiting area to talk to us before he enters the operating room. Depending on what exactly needs to be done during surgery, it can take anywhere from 6-8 hours. Once Dr. Hanley looks at Levi's heart, he will decide if the aortic valve needs to be repaired or replaced. He will also inspect Levi's aorta to see if it needs to be repaired.
I will continue to update the blog as we have more news. Much love to everyone. Thank you for lifting us up in prayer on this difficult day. Levi is a strong little boy and God is in total control.
Here are some pictures from the last couple days and one video. Levi started walking so much yesterday!
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| Right before we left for the airport |
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| on the way to the airport |
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| first real airplane ride (other than the air ambulance at two days old) |
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| bath the night before surgery |
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| with Daddy the morning of surgery |
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| getting ready to go back |
Thursday, June 2, 2011
Surgery and Firsts
Levi is 11 1/2 months old. It's hard to believe he'll be turning one on June 18. It's flown by so quickly.
To be honest, my heart is heavy today and I have a headache. Levi had his cardiology appointment today and it's definitely time for surgery. His left ventricle is much more dilated, so he needs to get his aortic valve repaired or replaced before things get worse. We're scheduled for June 24 at Lucile Packard Children's Hospital at Stanford. His pre-op appointment will be June 23 and we'll arrive a day before that. That's only three weeks away. The hospital stay should be around 7-10 days if all goes well. Then full recovery at home will take about 6 weeks. My mom will stay here with our other boys while we're away. I knew this day was coming, but it's still hard. I know tomorrow I'll be in a better frame of mind. It just needs to sink in a bit more.
Between now and June 24 Levi needs to stay really healthy. If he should get sick as surgery approaches, it will be postponed...a major headache. It seems like we've had rotating colds at our house over the past several months though. This should be interesting trying to keep a 1, 3, and 4 year old nice and healthy! So as much as we'd love to see our friends and their kids, please don't be offended if we hibernate a little more as the date approaches.
Okay, moving on from this depressing topic, May was a really nice month for our family. We enjoyed our time together and celebrated many firsts and special occasions.
First Steps
Levi took a few steps all be himself last night! I don't know if he's quite ready to give up crawling, but I think he's on his way to making the switch.
First Haircut
Last weekend, Levi got his first haircut. He's looking like such a big boy now.
First Fish
Noah went fishing with his daddy for the first time and caught his first fish -- a rainbow trout! We barbecued it that night and the few bites it gave us were delicious.
First Podium Win
This is James' second year of cross country mountain bike racing in Oregon. Last weekend was his first podium finish! He got 2nd place in his category in the Sisters Stampede!!! It was the first race that our whole family was able to attend and it was an awesome day.
First Trip to the Barber
Noah's had many haircuts, but never by a barber. He went to the same barber shop that James goes to and he looked like such a big boy in that chair. We love his new cut.
Birthday Celebrations
Jacob turned 3-years-old and James turned 34 just one day earlier. We sure ate a lot of cake that week!
So here we are at a crossroads. Summer is starting, Levi is going for surgery, and we're all growing up a bit more in so many ways.
We appreciate all of your prayers and support during this time.
Love,
Erika
To be honest, my heart is heavy today and I have a headache. Levi had his cardiology appointment today and it's definitely time for surgery. His left ventricle is much more dilated, so he needs to get his aortic valve repaired or replaced before things get worse. We're scheduled for June 24 at Lucile Packard Children's Hospital at Stanford. His pre-op appointment will be June 23 and we'll arrive a day before that. That's only three weeks away. The hospital stay should be around 7-10 days if all goes well. Then full recovery at home will take about 6 weeks. My mom will stay here with our other boys while we're away. I knew this day was coming, but it's still hard. I know tomorrow I'll be in a better frame of mind. It just needs to sink in a bit more.
Okay, moving on from this depressing topic, May was a really nice month for our family. We enjoyed our time together and celebrated many firsts and special occasions.
First Steps
Levi took a few steps all be himself last night! I don't know if he's quite ready to give up crawling, but I think he's on his way to making the switch.
First Haircut
Last weekend, Levi got his first haircut. He's looking like such a big boy now.
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| before |
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| during |
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| after |
Noah went fishing with his daddy for the first time and caught his first fish -- a rainbow trout! We barbecued it that night and the few bites it gave us were delicious.
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| getting help from a volunteer |
First Podium Win
This is James' second year of cross country mountain bike racing in Oregon. Last weekend was his first podium finish! He got 2nd place in his category in the Sisters Stampede!!! It was the first race that our whole family was able to attend and it was an awesome day.
First Trip to the Barber
Noah's had many haircuts, but never by a barber. He went to the same barber shop that James goes to and he looked like such a big boy in that chair. We love his new cut.
Birthday Celebrations
Jacob turned 3-years-old and James turned 34 just one day earlier. We sure ate a lot of cake that week!
So here we are at a crossroads. Summer is starting, Levi is going for surgery, and we're all growing up a bit more in so many ways.
We appreciate all of your prayers and support during this time.
Love,
Erika
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