Tuesday, August 28, 2012
Saturday, August 25, 2012
Welcome to Holland
http://www.youtube.com/watch?v=RqGQjoTn2xY&feature=shareis
I came across this poem many months ago. It reminded me not to focus so much on what we've missed out on given the special circumstances of Zachary's birth and ongoing recovery, but instead to appreciate the things we otherwise may have never known or appreciated. Worth the watch.
I came across this poem many months ago. It reminded me not to focus so much on what we've missed out on given the special circumstances of Zachary's birth and ongoing recovery, but instead to appreciate the things we otherwise may have never known or appreciated. Worth the watch.
Saturday, August 18, 2012
whew . . .
We're back (both from the hospital and to the blog). We've actually been home from the hospital for a few days now but I've been too busy and too tired to post.
A lot has happened since last weekend. Zachary was admitted to the hospital on Sunday after showing signs of congestive heart failure because of the flood of blood that was swamping his heart, a result of the artery that had connected to a vein near his tiny ticker.
We didn't really know how sick he was until after surgery when the docs told us that his heart eventually would have stopped working from fatigue had they not fixed the problem. One of the surgeons actually said "I'm not saying it would have happened in the next couple days, but it would have happened eventually." Ok then.
The near four hour procedure was rough for us all. They placed two metal coils and some metal wire (actually nickel and titanium to be exact) in the connection between the artery and vein to make the blood flow where it's supposed to. Upon doing so they said his heart rate dropped back to near normal almost immediately and the blood that had been pooling under his eye as a result of the venous congestion started dissipating.
The waiting was the hard part for us. We got updates about every hour from one of the nurses who was assisting with the procedures. It took so long because they also did a heart catheterization to measure the pressure in his ventricles (which was just slightly elevated) and checked to see whether he had any additional arteriovenous abnormalities in his lungs, which he thankfully did not.
He rested comfortably for the first few hours after surgery, thanks to some sedatives and pain-killers. Then he woke up and was not too happy. The docs thought it was a hangover from the anesthesia since he was under a long time for such a little guy. Had a very rough night that night with a really high heart rate and some vomiting, but he calmed down over the next couple days.
We're very happy obviously to have caught the problem in time. But a test before he was discharged showed there was some residual flow of blood around the coils and wires that are supposed to stop that from happening. Hoping that will resolve itself or he may need to go back in a month or so to have some more metal inserted to dam-up the vessels.
The other unfortunate occurrence is that he hasn't eaten much by mouth since the surgery. Not sure why but we're going to be devastated if he stops eating orally after we spent to much time weaning him from his feeding tube, which his pulmonologist wants us to start using again, at least overnight. He labels him as "failure to thrive," which is a sort of catch-all term for kids who aren't gaining weight and getting enough nutrition.
We've worked hard getting him where he is, or was pre-surgery, and will do everything we can to avoid tube feeds with artificial formula, but we'll need to fatten him up soon or any weaning from the ventilator, and subsequent removal of the trach, will be delayed. But the consensus seems to be that fixing the blood flow problem may help his overall health, allowing him to breathe easier, burn fewer calories doing so, and perhaps gain weight faster. Let's hope!
Things went well, then, everything considered. Whew . . .
A lot has happened since last weekend. Zachary was admitted to the hospital on Sunday after showing signs of congestive heart failure because of the flood of blood that was swamping his heart, a result of the artery that had connected to a vein near his tiny ticker.
We didn't really know how sick he was until after surgery when the docs told us that his heart eventually would have stopped working from fatigue had they not fixed the problem. One of the surgeons actually said "I'm not saying it would have happened in the next couple days, but it would have happened eventually." Ok then.
The near four hour procedure was rough for us all. They placed two metal coils and some metal wire (actually nickel and titanium to be exact) in the connection between the artery and vein to make the blood flow where it's supposed to. Upon doing so they said his heart rate dropped back to near normal almost immediately and the blood that had been pooling under his eye as a result of the venous congestion started dissipating.
The waiting was the hard part for us. We got updates about every hour from one of the nurses who was assisting with the procedures. It took so long because they also did a heart catheterization to measure the pressure in his ventricles (which was just slightly elevated) and checked to see whether he had any additional arteriovenous abnormalities in his lungs, which he thankfully did not.
He rested comfortably for the first few hours after surgery, thanks to some sedatives and pain-killers. Then he woke up and was not too happy. The docs thought it was a hangover from the anesthesia since he was under a long time for such a little guy. Had a very rough night that night with a really high heart rate and some vomiting, but he calmed down over the next couple days.
We're very happy obviously to have caught the problem in time. But a test before he was discharged showed there was some residual flow of blood around the coils and wires that are supposed to stop that from happening. Hoping that will resolve itself or he may need to go back in a month or so to have some more metal inserted to dam-up the vessels.
The other unfortunate occurrence is that he hasn't eaten much by mouth since the surgery. Not sure why but we're going to be devastated if he stops eating orally after we spent to much time weaning him from his feeding tube, which his pulmonologist wants us to start using again, at least overnight. He labels him as "failure to thrive," which is a sort of catch-all term for kids who aren't gaining weight and getting enough nutrition.
We've worked hard getting him where he is, or was pre-surgery, and will do everything we can to avoid tube feeds with artificial formula, but we'll need to fatten him up soon or any weaning from the ventilator, and subsequent removal of the trach, will be delayed. But the consensus seems to be that fixing the blood flow problem may help his overall health, allowing him to breathe easier, burn fewer calories doing so, and perhaps gain weight faster. Let's hope!
Things went well, then, everything considered. Whew . . .
Friday, August 10, 2012
NICU . . . PICU . . . CICU
We'll be hitting the trifecta, so to speak, on Sunday, though it's not one we are looking forward to winning.
The trio to which I refer is the third different ICU that Zachary soon will be visiting. He was in the Neonatal ICU for his first eight months, then had several stints in the Pediatric ICU over the past year. And now he'll be spending some time in the Cardiac ICU starting Sunday in preparation for surgery the following day to fix his AVM.
We weren't expecting surgery so soon but his condition has worsened over the past week or so. His heart rate is getting higher as his heart compensates for the short-circuited blood flow created by the tangled vessels. He's also been breathing faster and the amount of oxygen in his blood has crept close to dropping below the level his cardiologist and pulmonologist are comfortable with.
The plan is to thread a catheter through his groin to his heart and inject contrast dye so they can see what exactly is going on with the vessels. Then, absent any other problems, use a metal coil to divert the blood flow back where it's supposed to go, a procedure called an arteriogram with embolization.
Then they'll also perform a pulmonary angiograph, which is similar, but to check for vessel malformations in his lungs. The lung doc wants to rule out an underlying genetic condition called Hereditary Hemorrhagic Telangiectasis (HHT) that could be causing abnormal blood vessel formation in his lungs. Not going to worry about that now though.
We're really bummed about the coming hospitalization. Best case is he'll be in for three or four days if all goes well. Could be longer if it doesn't.
It's going to be sad to see him poked and prodded again and not understand why we aren't stopping his pain. And he'll probably be most troubled by being caged up in the hospital cribs, which are really like little jails, bars and all.
We'll see what happens.
The trio to which I refer is the third different ICU that Zachary soon will be visiting. He was in the Neonatal ICU for his first eight months, then had several stints in the Pediatric ICU over the past year. And now he'll be spending some time in the Cardiac ICU starting Sunday in preparation for surgery the following day to fix his AVM.
We weren't expecting surgery so soon but his condition has worsened over the past week or so. His heart rate is getting higher as his heart compensates for the short-circuited blood flow created by the tangled vessels. He's also been breathing faster and the amount of oxygen in his blood has crept close to dropping below the level his cardiologist and pulmonologist are comfortable with.
The plan is to thread a catheter through his groin to his heart and inject contrast dye so they can see what exactly is going on with the vessels. Then, absent any other problems, use a metal coil to divert the blood flow back where it's supposed to go, a procedure called an arteriogram with embolization.
Then they'll also perform a pulmonary angiograph, which is similar, but to check for vessel malformations in his lungs. The lung doc wants to rule out an underlying genetic condition called Hereditary Hemorrhagic Telangiectasis (HHT) that could be causing abnormal blood vessel formation in his lungs. Not going to worry about that now though.
We're really bummed about the coming hospitalization. Best case is he'll be in for three or four days if all goes well. Could be longer if it doesn't.
It's going to be sad to see him poked and prodded again and not understand why we aren't stopping his pain. And he'll probably be most troubled by being caged up in the hospital cribs, which are really like little jails, bars and all.
We'll see what happens.
Friday, August 3, 2012
can't make this stuff up
6:30 a.m. -- walked in on nurse about to give Zachary TOO MUCH of the WRONG medicine
7:15 a.m. -- needed to suction Zachary but nurse failed to replace suction catheter without telling me
1:00 p.m. -- nurse mistakenly turns off vent heater wire
4:15 p.m. -- pulmonologist calls to cancel sleep study because of AVM
5:30 p.m. -- nurse throws bag of garbage on porch (not in garbage can)
8:15 p.m. -- found a Viagra pill (not ours) on the floor in Zachary's play room
7:15 a.m. -- needed to suction Zachary but nurse failed to replace suction catheter without telling me
1:00 p.m. -- nurse mistakenly turns off vent heater wire
4:15 p.m. -- pulmonologist calls to cancel sleep study because of AVM
5:30 p.m. -- nurse throws bag of garbage on porch (not in garbage can)
8:15 p.m. -- found a Viagra pill (not ours) on the floor in Zachary's play room
Thursday, August 2, 2012
AVM
Finally found out what's been causing the blue arm and other assorted symptoms Zachary has been experiencing the past few weeks. It's called an Arteriovenous Malformation, or AVM, for short.
It was hard to follow the explanation we got from the docs but here goes. One of the arteries in his right upper chest sprang a leak sometime ago (probably because it was nicked by one of the central lines he had in the past) and established a connection, referred to as a shunt or fistula, with a nearby vein. Then the capillaries in the area intertwined themselves around the whole thing creating a tangled mess of blood vessels.
The result: oxygenated blood coming from his heart is not going to his arm like it is supposed to. Instead it is taking a short cut through the connection between the artery and vein and is being shuttled right back to his heart, making his heart work harder than it should. The concerns are twofold. First, the vessels could weaken and start bleeding badly. Second, his heart could be jeopardized because it is trying to compensate for the diverted blood flow. Both would be life threatening.
AVMs are more common in the brain, though they can appear anywhere in the organs, torso, or limbs. Many people who have them are asymptomatic, in which case surgical intervention may be eschewed. But action is indicated in most cases when symptoms are present, as in Zachary's case.
Aside from his arm turning blue, it gets cold and swells, and his heart rate has increased by about 20 beats per minute, indicating increased strain on his heart. And he's been a little uncoordinated the past week or so, stumbling around and struggling to keep his balance. These symptoms are not unusual for people with AVMs, apparently.
His cardiologist has consulted with a vascular surgeon, who is devising a plan of attack, which will involve one or more procedures to alleviate the problem. He'll have to be in the cardiac ICU as a precaution following the surgery, which I think is just hospital protocol and not because of specific concerns.
We're sad, of course, that our little guy has to go through more invasive tinkering with his insides. And we're also frustrated that this might delay the mid-August sleep study that could allow us to start weaning the vent. Seems like we keep taking two steps forward and one, or more, back.
Should know in the next day or so what the plan will be.
It was hard to follow the explanation we got from the docs but here goes. One of the arteries in his right upper chest sprang a leak sometime ago (probably because it was nicked by one of the central lines he had in the past) and established a connection, referred to as a shunt or fistula, with a nearby vein. Then the capillaries in the area intertwined themselves around the whole thing creating a tangled mess of blood vessels.
The result: oxygenated blood coming from his heart is not going to his arm like it is supposed to. Instead it is taking a short cut through the connection between the artery and vein and is being shuttled right back to his heart, making his heart work harder than it should. The concerns are twofold. First, the vessels could weaken and start bleeding badly. Second, his heart could be jeopardized because it is trying to compensate for the diverted blood flow. Both would be life threatening.
AVMs are more common in the brain, though they can appear anywhere in the organs, torso, or limbs. Many people who have them are asymptomatic, in which case surgical intervention may be eschewed. But action is indicated in most cases when symptoms are present, as in Zachary's case.
Aside from his arm turning blue, it gets cold and swells, and his heart rate has increased by about 20 beats per minute, indicating increased strain on his heart. And he's been a little uncoordinated the past week or so, stumbling around and struggling to keep his balance. These symptoms are not unusual for people with AVMs, apparently.
His cardiologist has consulted with a vascular surgeon, who is devising a plan of attack, which will involve one or more procedures to alleviate the problem. He'll have to be in the cardiac ICU as a precaution following the surgery, which I think is just hospital protocol and not because of specific concerns.
We're sad, of course, that our little guy has to go through more invasive tinkering with his insides. And we're also frustrated that this might delay the mid-August sleep study that could allow us to start weaning the vent. Seems like we keep taking two steps forward and one, or more, back.
Should know in the next day or so what the plan will be.
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