Grace came out of surgery Friday afternoon. Everything about the pacemaker surgery went extremely well. We did not have access to the internet until we got back to the Ronald McDonald House early this morning.
We were given some pretty dire warnings about what could go wrong with the pacing surgery; so far, none of those warnings have surfaced. But, just as Grace has done before, she surprised us with a completely new, unrelated problem.
While putting the pacemaker in, the doctor noticed her right atrium was in 'flutter'. All of her monitoring could not pick it up. Basically, it means that Grace's right atrium was still beating in pace with the rest of her heart (so everything looked normal); but, in addition to the regular pulse it was beating a second time inbetween the regular beats. This is something that is easy to correct by shocking the heart to pump even faster and it will reset itself to the regular beat.
However, with Grace's condition and just coming out of surgery they were extra careful and performed an echocardiagram to make sure that everything was okay. It was during this that they found blood clots in both her right and left atrium.
So, here is the course of action for Grace:
- give her a few days to recover from the surgery
- get her on medication to resolve the blood clot issue (they started this slowly last night)
- shock her heart back to a normal pace
All in all, she looks great and is doing as well as can be expected. I've said it before - she truly is a fighter!
Sunday, February 25, 2007
Friday, February 23, 2007
Hi Everyone,
Gracie Ann was just taken into the OR for her pacemaker surgery. We were told that she had her best night ever last night. When we saw her today she looked better than we have ever seen her. I have a really good feeling that she will have a good outcome from this. We will hear more in a few hours so we will try to post again later. It may be tonight before we have computer access again...
Gracie Ann was just taken into the OR for her pacemaker surgery. We were told that she had her best night ever last night. When we saw her today she looked better than we have ever seen her. I have a really good feeling that she will have a good outcome from this. We will hear more in a few hours so we will try to post again later. It may be tonight before we have computer access again...
Wednesday, February 21, 2007
No surgery today
Gracie Ann's surgery was canceled for today. She got a mysterious rash last night (it's gone now) her Surgeon, Dr. Azaike said that he doesn't want to take her into the OR unless is as close to perfect as she can be. She is on the schedule for Friday, so we will have to wait and see...
Tuesday, February 20, 2007
February 20, 2007
Just wanted to give you a quick update about Gracie's pacemaker surgery...
I just spoke with Gracie's Nurse and she said that Dr. Azaike has Gracie on tomorrow's schedule for her pacemaker surgery. However she is still not sure if he will do it or not. He still thinks she has too much fluid so he wants to wait to see how she looks in the morning before he decided weather or not to cancel the surgery. The nurse (Megan) said she thinks it's about a 60-40 chance that she will NOT have the surgery tomorrow. The batteries on the temporary pacemaker were changed today and the wires were tested and they seem to be working fine so Megan said that there is no rush to do it this week.
Thanks for all of your prayers. Keep them coming!
Blessings,
Jackie
I just spoke with Gracie's Nurse and she said that Dr. Azaike has Gracie on tomorrow's schedule for her pacemaker surgery. However she is still not sure if he will do it or not. He still thinks she has too much fluid so he wants to wait to see how she looks in the morning before he decided weather or not to cancel the surgery. The nurse (Megan) said she thinks it's about a 60-40 chance that she will NOT have the surgery tomorrow. The batteries on the temporary pacemaker were changed today and the wires were tested and they seem to be working fine so Megan said that there is no rush to do it this week.
Thanks for all of your prayers. Keep them coming!
Blessings,
Jackie
Sunday, February 18, 2007
'Episodes'
Hello Again,
An update for those of you checking in...
Grace's condition remains about the same. For every two steps forward there is one and seven-eighths back. She will do fine for many hours and then something - her blood pressure, or fluid levels, or pulse, or temperature, or poops, or blood gases, or any number of other things - will slowly begin to climb, or drop, out of the acceptable range and the staff will have to do something to right it. But whatever it is that is used to stabilize that imbalance will then cause another to be off... and then the next, and the next, right on down the line until she settles down.
So in the last 24 hours she has had a transfusion of blood and an increase in support on her ventilator. Her stools were sent out for labs and everyone (except mom and dad) have to robe and mask up when they enter her room until the results come back negative. This slows response time down a bit as the nurse, understandably, doesn't want to wear a mask and robe all the time.
Good news - her swelling is receeding and her color is coming back which means she's fighting the jaundice.
We had a meeting with the medical team Friday. They outlined the major steps Grace needs to take in the coming weeks:
First, she needs to have a permanent pacemaker put in. It is about the size of - well, how do I explain this - put your thumb and index finger together and make an oval; now seperate your thumb and index finger as if you where holding a good sized marble... the whole space between your two fingers, thats about the size of it. They have to find a way to fit this in little tiny Grace. This will be a major surgery, as they will go in from the left side, collapse her left lung, insert three pacing wires to both ventricles and her right atrium, place the pacemaker beneath her ribcage, and hope that her skin is elastic enough to close up.
After she is out of surgery she will be in a lot of pain, and may have any number of complications. They have already told us to expect a major setback; as humans, both adult and infant, don't like having foreign objects in their bodies. However the risk of infection from the external pacemaker is growing greater and greater with everyday... so in must the permanent pacemaker go.
They are looking to do this towards the end of next week (Wednesday, Thursday, Friday)... so, if you find yourself with a spare momment or two, send a prayer out for Grace. We will have about 24 hour notice and will post the actual time when we find out. She must have a solid day without an 'episode' or the surgery will be postponed.
Second, she will have to get off of the ventilator. The longer she is on it the harder it is to get off. It's kind of a double edged sword - it's allowing her to breathe easier and the rest of her organs are doing well because of it - but, she has not learned to use her chest or stomach muscles herself - and that means her lungs are not developing as they should... so that will be a huge hurdle.
Lastly, overcoming whatever complications and/or infection may arise from these proceedures, and getting all of her IV and other lines out. They have told us that for about a week after the pacemaker is put in she will not be doing well... but, after that she should start recovering and progressing. If everything goes well and she gets the pacemaker in successfully and the ventilator out successfully - she can move freely and exercise those muscles. No more medication to relax her muscles. We will be able to hold her!
In the end, the doctors told us to expect Grace to be here for about another three months. It could be shorter if everything went perfectly, but we are planning on the three months.
Thank you all for your continued support,
David
An update for those of you checking in...
Grace's condition remains about the same. For every two steps forward there is one and seven-eighths back. She will do fine for many hours and then something - her blood pressure, or fluid levels, or pulse, or temperature, or poops, or blood gases, or any number of other things - will slowly begin to climb, or drop, out of the acceptable range and the staff will have to do something to right it. But whatever it is that is used to stabilize that imbalance will then cause another to be off... and then the next, and the next, right on down the line until she settles down.
So in the last 24 hours she has had a transfusion of blood and an increase in support on her ventilator. Her stools were sent out for labs and everyone (except mom and dad) have to robe and mask up when they enter her room until the results come back negative. This slows response time down a bit as the nurse, understandably, doesn't want to wear a mask and robe all the time.
Good news - her swelling is receeding and her color is coming back which means she's fighting the jaundice.
We had a meeting with the medical team Friday. They outlined the major steps Grace needs to take in the coming weeks:
First, she needs to have a permanent pacemaker put in. It is about the size of - well, how do I explain this - put your thumb and index finger together and make an oval; now seperate your thumb and index finger as if you where holding a good sized marble... the whole space between your two fingers, thats about the size of it. They have to find a way to fit this in little tiny Grace. This will be a major surgery, as they will go in from the left side, collapse her left lung, insert three pacing wires to both ventricles and her right atrium, place the pacemaker beneath her ribcage, and hope that her skin is elastic enough to close up.
After she is out of surgery she will be in a lot of pain, and may have any number of complications. They have already told us to expect a major setback; as humans, both adult and infant, don't like having foreign objects in their bodies. However the risk of infection from the external pacemaker is growing greater and greater with everyday... so in must the permanent pacemaker go.
They are looking to do this towards the end of next week (Wednesday, Thursday, Friday)... so, if you find yourself with a spare momment or two, send a prayer out for Grace. We will have about 24 hour notice and will post the actual time when we find out. She must have a solid day without an 'episode' or the surgery will be postponed.
Second, she will have to get off of the ventilator. The longer she is on it the harder it is to get off. It's kind of a double edged sword - it's allowing her to breathe easier and the rest of her organs are doing well because of it - but, she has not learned to use her chest or stomach muscles herself - and that means her lungs are not developing as they should... so that will be a huge hurdle.
Lastly, overcoming whatever complications and/or infection may arise from these proceedures, and getting all of her IV and other lines out. They have told us that for about a week after the pacemaker is put in she will not be doing well... but, after that she should start recovering and progressing. If everything goes well and she gets the pacemaker in successfully and the ventilator out successfully - she can move freely and exercise those muscles. No more medication to relax her muscles. We will be able to hold her!
In the end, the doctors told us to expect Grace to be here for about another three months. It could be shorter if everything went perfectly, but we are planning on the three months.
Thank you all for your continued support,
David
Tuesday, February 13, 2007
Weekend Update
Hello Everyone,
Thank you all for your continued support and prayers. I apologize to those of you who want more frequent updates. Please keep calling, it helps keep us on track with this blog; and it's good to hear from you.
This was a busy weekend for me as Jackie caught some kind of bug, so she couldn't be around Grace, and I had the other three kids. Jackie stayed home and the rest of us were at the hospital and Ronald McDonald house trying to keep from getting whetever Jackie had.
So, an update on Grace...
It is frustrating, after stringing along a few good days and forward progress, to reach a plateau. Grace needs to get off of the ventilator so that she can exercise her chest muscles and stomach on her own. She gets down to barely any help from the ventilator and does just fine. But, the instant they try to stop, she stresses out; her blood pressure shoots up, her breathing gets irregular, and they have to put her right back up to higher settings. It was, and continues to be, a roller coaster...
Any time she gets agitated (for just about any reason: being moved in a way she doesn't like, suctioning her tubes, flushing her lines, or not being able to 'watch' Discovery Channel with dad) her CO2 output rises. When this happens they have to 'adjust' the ventilator modes and her amounts to find an equalibrium where she will stabilize. Then the game of slowly reducing her begins again.
She got a new arterial line on Friday. This time in her left foot. It took several tries... so in addition to the large line above her ankle, there are now several bandages around her foot as well. Because of the new line she is responding much better to her medications. The old one was "falling apart" (not really, but one nurse said that it wasn't very useful anymore).
The new central line allowed her to have the IV's removed from her left hand. Which is now black and blue with bruises, scabs from the little pinholes and peeling from her swelling and decrease in fluids. However, now she has the ability to move her little hand and takes great pride in doing so. I like to believe that every time she is raising her tiny fist she is saying "I Rule" ala Kevin Spacey in American Beauty. The kids just think she is looking for a 'high five'.
Grace is now off of all of her continuous feed medications except the blood thinner Heparin. Everything else is just given to her as needed. Mostly she wakes up and is visibly upset with what is going on and the nurses have to sedate her with Morphine.
Her jaundice is much better. They have taken her off of the gallstone medication which was increasing her jaundice.
The people from genetics were in today running tests. I am still trying to find out what the tests where for. I do know that we won't get any results for several weeks.
She is taking 17cc's of food per hour. Her goal is 19cc's. But, just like everything else, she gets so incredibly close and then decides to test all of our patience.
So, all in all, she is doing her part and we're doing ours. The next big hurdle is getting her off of the ventilator. Keep sending your prayers to Grace...
Thank you all again,
David
Thank you all for your continued support and prayers. I apologize to those of you who want more frequent updates. Please keep calling, it helps keep us on track with this blog; and it's good to hear from you.
This was a busy weekend for me as Jackie caught some kind of bug, so she couldn't be around Grace, and I had the other three kids. Jackie stayed home and the rest of us were at the hospital and Ronald McDonald house trying to keep from getting whetever Jackie had.
So, an update on Grace...
It is frustrating, after stringing along a few good days and forward progress, to reach a plateau. Grace needs to get off of the ventilator so that she can exercise her chest muscles and stomach on her own. She gets down to barely any help from the ventilator and does just fine. But, the instant they try to stop, she stresses out; her blood pressure shoots up, her breathing gets irregular, and they have to put her right back up to higher settings. It was, and continues to be, a roller coaster...
Any time she gets agitated (for just about any reason: being moved in a way she doesn't like, suctioning her tubes, flushing her lines, or not being able to 'watch' Discovery Channel with dad) her CO2 output rises. When this happens they have to 'adjust' the ventilator modes and her amounts to find an equalibrium where she will stabilize. Then the game of slowly reducing her begins again.
She got a new arterial line on Friday. This time in her left foot. It took several tries... so in addition to the large line above her ankle, there are now several bandages around her foot as well. Because of the new line she is responding much better to her medications. The old one was "falling apart" (not really, but one nurse said that it wasn't very useful anymore).
The new central line allowed her to have the IV's removed from her left hand. Which is now black and blue with bruises, scabs from the little pinholes and peeling from her swelling and decrease in fluids. However, now she has the ability to move her little hand and takes great pride in doing so. I like to believe that every time she is raising her tiny fist she is saying "I Rule" ala Kevin Spacey in American Beauty. The kids just think she is looking for a 'high five'.
Grace is now off of all of her continuous feed medications except the blood thinner Heparin. Everything else is just given to her as needed. Mostly she wakes up and is visibly upset with what is going on and the nurses have to sedate her with Morphine.
Her jaundice is much better. They have taken her off of the gallstone medication which was increasing her jaundice.
The people from genetics were in today running tests. I am still trying to find out what the tests where for. I do know that we won't get any results for several weeks.
She is taking 17cc's of food per hour. Her goal is 19cc's. But, just like everything else, she gets so incredibly close and then decides to test all of our patience.
So, all in all, she is doing her part and we're doing ours. The next big hurdle is getting her off of the ventilator. Keep sending your prayers to Grace...
Thank you all again,
David
Friday, February 9, 2007
more of the same
Gracie is doing about the same. She is on antibiotics for her infection and is still having trouble keeping calcium and electrolytes in her system. She is loosing some of her extra fluid which is good but needs to loose more before they can put in her pacemaker.
I have a sore throat so I can't go see her but Dave and the girls are with her this weekend. I hope to be better by Monday so I can go be with her next week.
I have a sore throat so I can't go see her but Dave and the girls are with her this weekend. I hope to be better by Monday so I can go be with her next week.
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