The drs rounded this morning, and all looks well! He's having his morphine dropped down once his LA line comes out (a line that goes directly into his left atrium). He'll also get his arterial line taken out, and his catheter. Once that all happens, he'll be much more mobile - we can go for walks and even outside with our nurse. :)
Then the great news...we're hitting the floor later this afternoon! No moderate care for this guy...straight to a regular room.
Once they pull the lines, they'll keep an eye on his platelets - he's on the border and we want to make sure he doesn't need a transfusion before taking him out.
A busy day ahead! I'll try to take some photos to post once he's a little more awake later.
Prayers appreciated for another good, progressive day!
Sunday, August 16, 2009
Saturday, August 15, 2009
our little movie star,
Remember during Evan's first surgery, he starred in a PICU orientation video? We've been searching to find it, and today our nurse located it - it's been on the UofM website the whole time:
http://surgery.med.umich.edu/portal/clinical/patiented.shtml
Check out the 'Tour of the Pediatric Cardiothoracic Intensive Care Unit. You may recognize the featured family (and free Qdoba advertising as well...)
Enjoy - warning. This is Evan on the vent - not an easy sight, but was a needed step towards our healthy little boy!
http://surgery.med.umich.edu/portal/clinical/patiented.shtml
Check out the 'Tour of the Pediatric Cardiothoracic Intensive Care Unit. You may recognize the featured family (and free Qdoba advertising as well...)
Enjoy - warning. This is Evan on the vent - not an easy sight, but was a needed step towards our healthy little boy!
24 hours in the life.
Friday, 10:00am - playing outside, hamming it up for the crowd.
Friday, 1:00pm - sleeping peacefully, waiting to go back for surgery.
Saturday, 9:00am - off the vent, snoozing in a room with a view.
Life is good.Evan's doing great - he went off the vent last night around 12:30am. Pressures are good, he went off dopamine (pressure med) this afternoon. On Lasix to get rid of fluid, which he's peeing great. He's been sucking down as much Pedialyte as we'll give him (8 oz so far). Napping peacefully, even clapping at one point in his sleep. He's in a private PICU room, so it's nice and quiet, even with a view of the courtyard below. His nurses are wonderful (as always!) and we've been spending the day by his side. Looks like he should be out of the PICU by Monday (yah!) and hopefully home later in the week.
Life is great.
Friday, August 14, 2009
success!
Evan's surgeon just came and gave us the final word - everything went great! The nurse didn't have a complete story...
His mitral valve had a large amount of tissue above, to the degree they couldn't even see the valve (abnormal even from what his surgeon is used to seeing). He even said they had to blindly cut a little to figure it out - but was able to safely cut it all out, leaving the valve intact. He then dilated the valve some (now at a 17 instead of a 14 prior to surgery). This should make a huge difference to his heart function and flow ability.
He did go into the aorta, and scrape the small amount of tissue away from below the aortic valve - this was a quick, easy fix.
Evan handled everything well - his blood pressures are great, and came up on no meds other than the pain med. He's having a junctional heart rhythm - normal for after a surgery like this. He handles it just fine though, and should be back in steady sinus heart rhythm within the next numbers of hours.
The next 12 hours will be the most difficult on Evan's heart - he'll have meds to help get him through. They'll continue to watch for bleeding and rhythm as he proceeds. Prayers (and some amazingly talented surgeons!) have carried him through, and we appreciate as you continue to pray with us.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7
His mitral valve had a large amount of tissue above, to the degree they couldn't even see the valve (abnormal even from what his surgeon is used to seeing). He even said they had to blindly cut a little to figure it out - but was able to safely cut it all out, leaving the valve intact. He then dilated the valve some (now at a 17 instead of a 14 prior to surgery). This should make a huge difference to his heart function and flow ability.
He did go into the aorta, and scrape the small amount of tissue away from below the aortic valve - this was a quick, easy fix.
Evan handled everything well - his blood pressures are great, and came up on no meds other than the pain med. He's having a junctional heart rhythm - normal for after a surgery like this. He handles it just fine though, and should be back in steady sinus heart rhythm within the next numbers of hours.
The next 12 hours will be the most difficult on Evan's heart - he'll have meds to help get him through. They'll continue to watch for bleeding and rhythm as he proceeds. Prayers (and some amazingly talented surgeons!) have carried him through, and we appreciate as you continue to pray with us.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7
more update
Evan's wrapping up surgery - he's off of the heart/lung machine! Dr. Devaney was able to REPAIR! not replace his mitral valve (yah!). He didn't end up doing anything with the aortic valve, but we don't know why yet... more news to come once we talk with Dr. Devaney (thus far, was just the nurse practitioner). Dr. Devaney will escort Evan up to the PICU in about an hour, then will come talk with us (around 5:30). They'll get Evan settled, and we'll be able to see him an hour later (around 6:30).
More updates to come as we get more info!
More updates to come as we get more info!
Evan update
Evan went into surgery around 1:30, we expect a 4-5 hour wait til his surgeon, Dr. Devaney, brings him up to Pod A (PICU). We did learn that they'll be doing a little bit more than we first anticipated for this surgery.
Mitral Valve - this was the original reason we are having this surgery. His has a supravalval ring (basically, a ring of tissue above his mitral valve) that, along with his parachuted mitral valve is causing a back up (stenosis of mitral valve). Dr. Devaney is hoping to scrape this tissue, and slit the leaflets of the valve to open up the flow enough to hold Evan off of a mitral valve replacement for a number of years. Right now, his valve is a size 14, where the smallest replacement valve is a 16, so it would be very crowded, and the crowding would further hinder his 2nd problem...
Aortic Valve - this we were unaware of before talking to Dr. Devaney this morning. They've noticed that Evan has developed a subvalular membrane (ring of tissue) - right now, it's not having an effect, however there is a tendancy of problems developing quickly once it grows. Dr. Devaney is also planning to scrape at this ring during surgery today.
Evan's heart...
Both of these rings will impact his bloodflow throughout, and the 2nd ring (aortic) is likely a result of the impaired flow he's had for the last year. We know that this surgery isn't a cure all forever. The supravalval ring in the mitral has a low tendency of recurrence, however the subvalular membrane in the aortic does reoccur 10-20% of the time. Based on Evan's tendancy towards abnormal growth, this is likely. This 2nd ring (aortic) is further evidence to not replace the mitral valve today. By putting in a valve that's too big, it will further crowd the already small aortic valve opening.
Each procedure is quick, but the whole procedure takes 4-5 hours. We just received an update from the nurse (at 3:30) they were just getting through the scar tissue (from his last surgery) and putting him on the heart/lung machine (does all of the blood oxygenating during surgery). So far, everything was going great. Please continue to pray with us, and I'll keep you updated as we can!
Mitral Valve - this was the original reason we are having this surgery. His has a supravalval ring (basically, a ring of tissue above his mitral valve) that, along with his parachuted mitral valve is causing a back up (stenosis of mitral valve). Dr. Devaney is hoping to scrape this tissue, and slit the leaflets of the valve to open up the flow enough to hold Evan off of a mitral valve replacement for a number of years. Right now, his valve is a size 14, where the smallest replacement valve is a 16, so it would be very crowded, and the crowding would further hinder his 2nd problem...
Aortic Valve - this we were unaware of before talking to Dr. Devaney this morning. They've noticed that Evan has developed a subvalular membrane (ring of tissue) - right now, it's not having an effect, however there is a tendancy of problems developing quickly once it grows. Dr. Devaney is also planning to scrape at this ring during surgery today.
Evan's heart...
Both of these rings will impact his bloodflow throughout, and the 2nd ring (aortic) is likely a result of the impaired flow he's had for the last year. We know that this surgery isn't a cure all forever. The supravalval ring in the mitral has a low tendency of recurrence, however the subvalular membrane in the aortic does reoccur 10-20% of the time. Based on Evan's tendancy towards abnormal growth, this is likely. This 2nd ring (aortic) is further evidence to not replace the mitral valve today. By putting in a valve that's too big, it will further crowd the already small aortic valve opening.
Each procedure is quick, but the whole procedure takes 4-5 hours. We just received an update from the nurse (at 3:30) they were just getting through the scar tissue (from his last surgery) and putting him on the heart/lung machine (does all of the blood oxygenating during surgery). So far, everything was going great. Please continue to pray with us, and I'll keep you updated as we can!
Tuesday, August 11, 2009
wow.
So, we knew that today would be a draining day. That tonight we would feel completely empty. My brain shuts down on surgery days. Last surgery, I lost our car. It took my parents driving us around the parking garage to find it. I knew what we would feel like tonight.
What I didn't know. After an evening spent doing fun stuff with Evan - mainly surrounding an evening at an Ann Arbor mall where he rode the carousel, in a motorized helicopter and train ride and crawling around a play area. After laying in bed, dreading today, trying to sleep. Waking Evan at 5am to get his last bottle in before surgery. Waking, and heading to the hospital. Visiting with dear family and friends. Praying for Evan and walking up to surgery with him and Derek. Being called into the office. Then being told "I'm the bearer of bad news..."
Evan's surgery was cancelled. Postponed until Friday. There was an emergency with another child, who was in the bed in the PICU that was held for Evan after surgery. We couldn't be angry - who is there to be angry at? U of M? It wasn't their fault. Evan was likely that emergency baby a year ago that postponed another child's surgery. Instead, we pray that things are okay for that other family who is likely in a worse situation than us. We pray and give thanks that Evan is stable and happy, and at this very moment, sleeping peacefully in his crib.
We still feel empty though. Drained. To tired to be frustrated. We're back home, not unpacked, waiting to return on Thursday. To have another fun evening out for Evan, another restless night of sleep awaiting his big day. Another morning of preparing Evan for surgery. Another crappy day of feeling drained and empty.
We trust in God's timing. Though, by no means do we understand it. I don't even try anymore. It's a lesson to me of giving this situation up to God. If you know me, you know I like to be in control. Derek claims I have issues. I say he just doesn't know how to listen. I'm learning with this, I have no control, but God does. And He does listen to our many, many prayers going up for our Evan. I told Evan earlier that God has a whole filing cabinet full of prayers, all being saved up for his surgery day. God listens, and answers our prayers. But He does it His way.
" 'My thoughts are not your thoughts, nor are your ways My ways' says the Lord. 'For as the heavens are higher than the earth, so are My ways higher than your ways, and My thought than your thoughts'" Isaiah 55:8-9
These hiccups aren't in our plan, but they are in His. And we continue to trust. And give up control. Even if He takes it kicking and screaming.
What I didn't know. After an evening spent doing fun stuff with Evan - mainly surrounding an evening at an Ann Arbor mall where he rode the carousel, in a motorized helicopter and train ride and crawling around a play area. After laying in bed, dreading today, trying to sleep. Waking Evan at 5am to get his last bottle in before surgery. Waking, and heading to the hospital. Visiting with dear family and friends. Praying for Evan and walking up to surgery with him and Derek. Being called into the office. Then being told "I'm the bearer of bad news..."
Evan's surgery was cancelled. Postponed until Friday. There was an emergency with another child, who was in the bed in the PICU that was held for Evan after surgery. We couldn't be angry - who is there to be angry at? U of M? It wasn't their fault. Evan was likely that emergency baby a year ago that postponed another child's surgery. Instead, we pray that things are okay for that other family who is likely in a worse situation than us. We pray and give thanks that Evan is stable and happy, and at this very moment, sleeping peacefully in his crib.
We still feel empty though. Drained. To tired to be frustrated. We're back home, not unpacked, waiting to return on Thursday. To have another fun evening out for Evan, another restless night of sleep awaiting his big day. Another morning of preparing Evan for surgery. Another crappy day of feeling drained and empty.
We trust in God's timing. Though, by no means do we understand it. I don't even try anymore. It's a lesson to me of giving this situation up to God. If you know me, you know I like to be in control. Derek claims I have issues. I say he just doesn't know how to listen. I'm learning with this, I have no control, but God does. And He does listen to our many, many prayers going up for our Evan. I told Evan earlier that God has a whole filing cabinet full of prayers, all being saved up for his surgery day. God listens, and answers our prayers. But He does it His way.
" 'My thoughts are not your thoughts, nor are your ways My ways' says the Lord. 'For as the heavens are higher than the earth, so are My ways higher than your ways, and My thought than your thoughts'" Isaiah 55:8-9
These hiccups aren't in our plan, but they are in His. And we continue to trust. And give up control. Even if He takes it kicking and screaming.
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