One of Joey's issues that wasn't an issue before because it wasn't one of his ISSUES was an issue this morning. Whew.
So I've written before about the three major problems that needed attention: his aortic coarctation (fixed!), his VSD (fixed!), and his stenotic valve (okay for now). One side effect of all of this stuff prenataly is that he has small blood vessels. We've seen this time and time again now, but it was never central to his recovery. I remember waiting in the ER room of our local hospital while the flight staff tried for over 30 minutes to get an IV in his arm before flying him down to Childrens', and when going on ECMO, the cardiac surgeon had to use a smaller vessel to go into his jugular vein because it was so small.
So it happened again today. :) Five nurses and two anesthesiologists couldn't get an IV in him anywhere. ugh. So we have to reschedule. Kate went up and talked with our friends on CICU and HKU, where we've spent so much time, and they told her that we could reuqest a cardiac anesthesiologist team, which would hopefully facilitate the IV since they do it more often!
So thanks for your prayers. They won't go un-wasted; we'll make sure to use them up on something good. :) We'll let you know when it's rescheduled.
Friday, January 14, 2011
Thursday, January 13, 2011
MRI: Take Two
Tomorrow, January 14th, is Joey's brain MRI. At least, we hope it will happen this time. The little Guy has a cold yet again, and this time is on antibiotics for his first ear infection. Seems that the kid takes after his big sister with his ears, but with him is seems like such a minor issue. "Antibiotics? Sure, they're easy. Ear Infection? No big deal. He's had worse.
So tomorrow early morning Joey and Mama will be making the trek down to see if he's safe to sedate, and therefore get this out of the way. Having the MRI is really just follow up for the small brain bleed he had while on ECMO, and also to check for any damage after his cardiac arrest. Giving how well he is developing nobody is worried about the findings; this is really just a follow-up to see if there are any concerns for the future and to establish a baseline.
Speaking of development, everyone is SO pleased with our little Rocky! He is sitting up unsupported, and only falls occasionally. Mostly when there's so much activity that he's trying to watch and loses his balance. He reaches for toys and plays a lot. Just the other day I watched as he searched for a toy he dropped, which is a huge milestone! Joey is also obsessed with his toes, which is another good indication on the normal baby timeline.
It is an interesting perspective to know that my son has a few minor delays and to not be concerned in the least. Not at all. He is my Miracle Boy, and every little thing he does is cause for a party. Well, despite the minor delays he has now he is likely to catch up just fine over time. He is still writing his own book, and all we have to do is encourage. It is a beautiful story.
My Happy, Social boy loves to babble! He babbles all. the. time. Sometimes it's hard to hear about the din, but often he will make sure he is heard! He laughs a lot, too, and there is no sound more beautiful than baby laughter!
Please pray for us tomorrow. Joey has rocked the sedation multiple times now without any problem. According to plan he will not even be intubated, but will breathe on his own the whole time. He just has to be very, very still. Then they will wake him up, let him EAT, and we will go home. Sounds so easy, but there are still a few little butterflies that will come later tonight for a Mama who has seen her baby go through so much.
I will update as soon as possible with the results!
Saturday, January 1, 2011
Wednesday, December 8, 2010
His first cold...
So Joey was supposed to have his head MRI the day after Thanksgiving. In retrospect, that probably wasn't the best day to schedule one of these sorts of things... I mean, who really wants to get up at 5:30 after a long evening of turkey, wine, and football?
Since he's so small, they have to sedate him for the 1/2 hour procedure so that he doesn't move, and since they're going to sedate him, he can't eat for 6 hours or so before the procedure! So we always try to schedule them first thing in the morning so he can (hopefully) sleep most of those 6 hours. He also has to wake up and start eating normally before being released, and with Joey, it's still a better idea to give him time. If he wants an extra few hours, I'd rather give it to him than require a silly overnight stay just because his recovery extends beyond business hours. Normally, I'd be anxious about my 6-month old needing general anesthesia, but Joey's already been-there-done-that. He does general like a champ! Asleep. Awake. Asleep. Awake. He's got it down pat. It wasn't really until the morning of that I started get a tad nervous.
Kate took him in, while I went to work, and the girls' grandmother stayed with them. Unfortunately, Joey had a cold that was bad enough that the anesthesiologist didn't want to put him under, so we had to reschedule. If he's not deeply asleep enough that he can still cough, the coughing would mess up the MRI, and if he is asleep such that he wouldn't cough, the phlegm could block his airway and turn into a bad situation very quickly. So we're on "wait" again!
His cold hasn't gone anywhere. Last night he wasn't able to keep any milk down, and we were thinking, "Just great...the last thing he needs is to be admitted for an IV drip!" But overnight, we use a thicker formula to help his reflux and he kept all of that down. So we'll probably keep up with that today to help little Rocky get better. hmmm...these posts are decidedly less shocking now that he's home and doing so well. It's okay...I'll trade his health for a more boring blog any day!
You might be wondering why he needs a brain MRI. Back when he was in the hospital for the first time, and on the ECMO (life-support) system, he positioned himself squarely with two problems that were opposite of each other.
On the one hand, ECMO requires the drug Heparin, which is a blood thinner, to keep clots from forming in the system. Blood clots form more easily on the plastic tubes that make up ECMO, and a clot has the potential for being injected right into his heart where the ECMO deposited the blood. Blood clots are not good things, and the doctors wanted to avoid them at all costs! In fact, they found a clot attached to the wall in the tubing that deposited the blood back into Joey. They had the surgeon come up and replace that section of tube. Since it happened once, they were hyper-vigilant about preventing another.
On the other hand, he had a small bleed in his brain. On the scale of 1-5, it was a 2, and typically those don't require any intervention--they just wait for it to heal. Unfortunately, when you want bleeding to stop, blood thinners work are no the best option... So his bleed lasted 3 or 4 days, which is longer than it typically would have. They also weaned him off the ECMO sooner than they typically do. The weaning wasn't unsafe...he did very well with it, and they would have left him on longer if he needed it, but typically they like to let them rest after a procedure for a couple of days to heal before starting to put more demands on his heart.
Obviously, at the time, getting his heart to support himself was the important goal. The bleed wasn't desireable, but there wasn't much they could do. They did a CAT scan on him, and it looked like there were some areas that suffered a lack of oxygen (a stroke) for a brief time, but the extent of it can't be determined without a MRI. So we've known he's going to need one for a while now. Also with the ECMO tube being replaced, he had reduced blood flow for the seconds it took to stop the machine, take the one tube out, put the other one in, and restart it. And then with his heart going into a non-pumping rythm during his second cath, there were a few seconds without oxygen before they started CPR. (Since there were a multitude of doctors and nurses in the cath lab, I doubt it was long before someone started compressions! They told us that the blood flow was virtually continuous. And since they had a monitor on, they could tell how hard the compressions had to be in order to produce correct blood pressures... Ah...the upsides!)
So he has a potential for brain injury, but we don't know yet. There's not really any intervention that we'll be able to do, even when we do find out, so that's why we haven't been in a rush. That and the fact that he needed another major surgery last month. That sort of preoccupied us. We have met with a neurologist already, and he was very optomistic. He used the analogy of the brain as a book, and a stroke tears pages from it. In Joey's case, it was likely minor, and he was so young that the pages were likely still blank. The brain has a miraculous way of adapting and if there is an area that's torn out, it would likely store the information that should have been there somewhere else. (The real damage from strokes that you see in older people is when pages get torn out that have memories on them. Then the brain must re-learn that info, which is sometimes impossible.)
He's doing great as far as we can tell, however. He's a little behind the curve developmentally, but he spent 7 weeks of his life asleep on tubes...I don't expect him to be average. He's working on sitting up now, and is getting stronger all the time. Yesterday, he rolled over for the first time. So, at end 0f this post, instead of with doom-and-gloom, you should leave with a happiness that he is still progressing nicely; he's a good little boy. And as we sit in Advent preparing hopefully for Christmas, we prepare hopefully for Joey's life ahead: not a perfect boy, but a wonderful gift that we're lucky to have.
Since he's so small, they have to sedate him for the 1/2 hour procedure so that he doesn't move, and since they're going to sedate him, he can't eat for 6 hours or so before the procedure! So we always try to schedule them first thing in the morning so he can (hopefully) sleep most of those 6 hours. He also has to wake up and start eating normally before being released, and with Joey, it's still a better idea to give him time. If he wants an extra few hours, I'd rather give it to him than require a silly overnight stay just because his recovery extends beyond business hours. Normally, I'd be anxious about my 6-month old needing general anesthesia, but Joey's already been-there-done-that. He does general like a champ! Asleep. Awake. Asleep. Awake. He's got it down pat. It wasn't really until the morning of that I started get a tad nervous.
Kate took him in, while I went to work, and the girls' grandmother stayed with them. Unfortunately, Joey had a cold that was bad enough that the anesthesiologist didn't want to put him under, so we had to reschedule. If he's not deeply asleep enough that he can still cough, the coughing would mess up the MRI, and if he is asleep such that he wouldn't cough, the phlegm could block his airway and turn into a bad situation very quickly. So we're on "wait" again!
His cold hasn't gone anywhere. Last night he wasn't able to keep any milk down, and we were thinking, "Just great...the last thing he needs is to be admitted for an IV drip!" But overnight, we use a thicker formula to help his reflux and he kept all of that down. So we'll probably keep up with that today to help little Rocky get better. hmmm...these posts are decidedly less shocking now that he's home and doing so well. It's okay...I'll trade his health for a more boring blog any day!
You might be wondering why he needs a brain MRI. Back when he was in the hospital for the first time, and on the ECMO (life-support) system, he positioned himself squarely with two problems that were opposite of each other.
On the one hand, ECMO requires the drug Heparin, which is a blood thinner, to keep clots from forming in the system. Blood clots form more easily on the plastic tubes that make up ECMO, and a clot has the potential for being injected right into his heart where the ECMO deposited the blood. Blood clots are not good things, and the doctors wanted to avoid them at all costs! In fact, they found a clot attached to the wall in the tubing that deposited the blood back into Joey. They had the surgeon come up and replace that section of tube. Since it happened once, they were hyper-vigilant about preventing another.
On the other hand, he had a small bleed in his brain. On the scale of 1-5, it was a 2, and typically those don't require any intervention--they just wait for it to heal. Unfortunately, when you want bleeding to stop, blood thinners work are no the best option... So his bleed lasted 3 or 4 days, which is longer than it typically would have. They also weaned him off the ECMO sooner than they typically do. The weaning wasn't unsafe...he did very well with it, and they would have left him on longer if he needed it, but typically they like to let them rest after a procedure for a couple of days to heal before starting to put more demands on his heart.
Obviously, at the time, getting his heart to support himself was the important goal. The bleed wasn't desireable, but there wasn't much they could do. They did a CAT scan on him, and it looked like there were some areas that suffered a lack of oxygen (a stroke) for a brief time, but the extent of it can't be determined without a MRI. So we've known he's going to need one for a while now. Also with the ECMO tube being replaced, he had reduced blood flow for the seconds it took to stop the machine, take the one tube out, put the other one in, and restart it. And then with his heart going into a non-pumping rythm during his second cath, there were a few seconds without oxygen before they started CPR. (Since there were a multitude of doctors and nurses in the cath lab, I doubt it was long before someone started compressions! They told us that the blood flow was virtually continuous. And since they had a monitor on, they could tell how hard the compressions had to be in order to produce correct blood pressures... Ah...the upsides!)
So he has a potential for brain injury, but we don't know yet. There's not really any intervention that we'll be able to do, even when we do find out, so that's why we haven't been in a rush. That and the fact that he needed another major surgery last month. That sort of preoccupied us. We have met with a neurologist already, and he was very optomistic. He used the analogy of the brain as a book, and a stroke tears pages from it. In Joey's case, it was likely minor, and he was so young that the pages were likely still blank. The brain has a miraculous way of adapting and if there is an area that's torn out, it would likely store the information that should have been there somewhere else. (The real damage from strokes that you see in older people is when pages get torn out that have memories on them. Then the brain must re-learn that info, which is sometimes impossible.)
He's doing great as far as we can tell, however. He's a little behind the curve developmentally, but he spent 7 weeks of his life asleep on tubes...I don't expect him to be average. He's working on sitting up now, and is getting stronger all the time. Yesterday, he rolled over for the first time. So, at end 0f this post, instead of with doom-and-gloom, you should leave with a happiness that he is still progressing nicely; he's a good little boy. And as we sit in Advent preparing hopefully for Christmas, we prepare hopefully for Joey's life ahead: not a perfect boy, but a wonderful gift that we're lucky to have.
Monday, November 8, 2010
and GROWING
This is what 15 lbs, 14 ozs looks like:
Chubby, Pink, and Happy
Check out all those chins!
Chubby, Pink, and Happy
Check out all those chins!
Monday, October 25, 2010
Friday, October 22, 2010
Our Spoiled Baby
It's amazing how spoiled the hospital makes Joey. Before his Cath last month, Joey was sleeping through the night. Kate would stay up a bit late and give him a bottle at 11 or so, and then I'd get up a little early to go to work at 4:30, and feed him then, and he'd sleep until 7 or 8. So through the night being 5.5 hrs, but since we could trade off, it worked. And then he went back to the hospital.
It was an odd stay because he was definitely alert and looking normal, with only an occasional weird cardiac rhythm. And he learned that, at any time, especially at night, he could fuss and get a nurse to come coo at him, rock him, and attend to his every need.
Spoiled boy.
After we got home from the Cath, but before the VSD repair, he added a 1:30 AM feeding to his arsenal... So there went sleeping through the night. We'd trade off nights, and survived. And then he went back to the hospital.
This was also an odd stay, because he did so well so quickly. He was extubated Friday (not 36 hours after the surgery), and in order to extubate, he needs to be alert, so he was already off of the sedation drugs. Normal post-op procedures required that he stay a minimum of 6 days, while he was weaned 0ff of any support by Sunday. So again, he learned that his ownslave nurse would come and coddle him, coo at him, feed him, and rock him at his beck and call.
Double spoiled boy.
He has yet to sleep for more than 1.5 hours at a time when not being held.
We love you, Joey, but it's time you remember how to sleep!
It was an odd stay because he was definitely alert and looking normal, with only an occasional weird cardiac rhythm. And he learned that, at any time, especially at night, he could fuss and get a nurse to come coo at him, rock him, and attend to his every need.
Spoiled boy.
After we got home from the Cath, but before the VSD repair, he added a 1:30 AM feeding to his arsenal... So there went sleeping through the night. We'd trade off nights, and survived. And then he went back to the hospital.
This was also an odd stay, because he did so well so quickly. He was extubated Friday (not 36 hours after the surgery), and in order to extubate, he needs to be alert, so he was already off of the sedation drugs. Normal post-op procedures required that he stay a minimum of 6 days, while he was weaned 0ff of any support by Sunday. So again, he learned that his own
Double spoiled boy.
He has yet to sleep for more than 1.5 hours at a time when not being held.
We love you, Joey, but it's time you remember how to sleep!
Subscribe to:
Posts (Atom)