Goes out to our buddy LC and her Mom at http://www.littlelcboomboom.blogspot.com/
For all the good loving you've been sending our way!
Go check out the award they passed along to my little man. It's definitely unique!
Big thanks to all of you who have been loving my boy! You're the best!
Sunday, September 6, 2009
Saturday, September 5, 2009
Saturday Night Update
Well unfortunately still no pictures, Daddy came with the kiddos tonight but in all the commotion getting out the door he forgot. I have to be grateful that he did remember to bring me something to eat!
He took some pictures on his cell phone but I won't be able to post those until we are home.
Today his heart rhythms were much better (all those prayers are working).
He's still bradying down periodically but the episodes have spaced out somewhat and aren't lasting as long.
The IV that was placed in his ankle last night only lasted the day :(
By this evening the IV pump was reading occluded and although they thought they had it working, he wouldn't stop crying afterward. We gave him a dose of pain meds to help him relax and when that didn't help I started looking. The IV site was wrapped with coband (that self adhesive wrap) so it wasn't visible. I started thinking maybe it was too tight, when I unwrapped it I saw that his whole ankle was swollen and hard. The IV had infiltrated when she tried to fix it.
She (the nurse) really tried to get a new one but eventually ended up calling two NICU nurses to get it.
Four tries later it was in.. ugh.
His feedings started this evening, at a big 5 mls per hour! He's now up to a solid 10 mls and doing well. He also started back on his motility meds.
Shows how much I trust our surgeon Dr.P., I never really asked details about what took place during the surgery. Turns out he placed a layer of stomach staples inside V, under the superficial layer of sutures. This helps to explain a little about why he's been going EXTRA slow with progressing him.
Looking forward to our first metal detector..lol.
Oh well, matches the metal in his sternum.
He took some pictures on his cell phone but I won't be able to post those until we are home.
Today his heart rhythms were much better (all those prayers are working).
He's still bradying down periodically but the episodes have spaced out somewhat and aren't lasting as long.
The IV that was placed in his ankle last night only lasted the day :(
By this evening the IV pump was reading occluded and although they thought they had it working, he wouldn't stop crying afterward. We gave him a dose of pain meds to help him relax and when that didn't help I started looking. The IV site was wrapped with coband (that self adhesive wrap) so it wasn't visible. I started thinking maybe it was too tight, when I unwrapped it I saw that his whole ankle was swollen and hard. The IV had infiltrated when she tried to fix it.
She (the nurse) really tried to get a new one but eventually ended up calling two NICU nurses to get it.
Four tries later it was in.. ugh.
His feedings started this evening, at a big 5 mls per hour! He's now up to a solid 10 mls and doing well. He also started back on his motility meds.
Shows how much I trust our surgeon Dr.P., I never really asked details about what took place during the surgery. Turns out he placed a layer of stomach staples inside V, under the superficial layer of sutures. This helps to explain a little about why he's been going EXTRA slow with progressing him.
Looking forward to our first metal detector..lol.
Oh well, matches the metal in his sternum.
Midnight update..
Ok, it's 12:30am but...
The bradycardic episodes have continued off and on all evening. After a couple of minutes he recovers on his own so for tonight we watch.
His night nurse was nice enough to reset the limits on the monitor alarms so that I can try to get some rest. Silly me still up on the laptop. Bad Mommy.
It is nice not to have to keep getting up to press the "silence" button every 30 seconds.
She promised she would keep a close eye on him (they can see everything from his monitor at the nurses station).
It finally happened, his IV went bad a few hours ago... *sigh*
When I told his nurse to "be prepared for a tough time", she obviously took me seriously. She excused herself and returned with a NICU nurse and let her place the new line.
All in all it wasn't too traumatic. This lady was good, she finally got one in his ankle.
Looks uber uncomfortable, but he's not complaining.
Now he's passed out snoozing and I'm on the computer perched in front of the monitor as it's NOT alarming anymore.
Go figure.
Guess I'll try to take advantage of it and get some rest.
Thank you all so much for loving my boy!
The bradycardic episodes have continued off and on all evening. After a couple of minutes he recovers on his own so for tonight we watch.
His night nurse was nice enough to reset the limits on the monitor alarms so that I can try to get some rest. Silly me still up on the laptop. Bad Mommy.
It is nice not to have to keep getting up to press the "silence" button every 30 seconds.
She promised she would keep a close eye on him (they can see everything from his monitor at the nurses station).
It finally happened, his IV went bad a few hours ago... *sigh*
When I told his nurse to "be prepared for a tough time", she obviously took me seriously. She excused herself and returned with a NICU nurse and let her place the new line.
All in all it wasn't too traumatic. This lady was good, she finally got one in his ankle.
Looks uber uncomfortable, but he's not complaining.
Now he's passed out snoozing and I'm on the computer perched in front of the monitor as it's NOT alarming anymore.
Go figure.
Guess I'll try to take advantage of it and get some rest.
Thank you all so much for loving my boy!
Friday, September 4, 2009
Quick Update
Just wanted to check in and give everyone an update. Unfortunately the feeding for today was put off until tomorrow.
By late this morning the "funky" heart rhythms were back. Less episodes of desatting but he's been bradying down quite often which he hasn't done since the day of surgery in recovery. They attributed the episodes to anesthesia, but the one's today are obviously not.
Dr.P wants another day of monitoring before we try to move on to feeding, so i'm keeping my fingers crossed for tomorrow.
Otherwise he's been awake and interacting more often and requiring less morphine which is good considering the heart issues he's having today.
Sooo... Momma's trying to keep him entertained and not go too stir crazy staring at the monitor all day. Daddy hasn't been back yet, he had to pick up the kids at school. Yay! for the three day weekend! Maybe we'll have some visitors tonight.
Thanks again for checking in.
By late this morning the "funky" heart rhythms were back. Less episodes of desatting but he's been bradying down quite often which he hasn't done since the day of surgery in recovery. They attributed the episodes to anesthesia, but the one's today are obviously not.
Dr.P wants another day of monitoring before we try to move on to feeding, so i'm keeping my fingers crossed for tomorrow.
Otherwise he's been awake and interacting more often and requiring less morphine which is good considering the heart issues he's having today.
Sooo... Momma's trying to keep him entertained and not go too stir crazy staring at the monitor all day. Daddy hasn't been back yet, he had to pick up the kids at school. Yay! for the three day weekend! Maybe we'll have some visitors tonight.
Thanks again for checking in.
Thursday, September 3, 2009
Darn it, still no camera!
Well, still no pictures. Daddy forgot. I have to forgive him though, he's handling all the kids alone this week. School, doctors appointments, everything.. gotta love that man.
Things are stable. He's had a few episodes of desatting into the 70's, no more funky heart rhythms this afternoon, but he still has to keep them on their toes. That's my kiddo.
He's been able to space out his morphine to about every 3 to 4 hours so he can be awake more often. Daddy brought Ryan, Kalei and Alissa to visit for a bit after school and he loved it.
He smiled for the first time in two days.
Thank goodness his IV is still holding and after he was cathed last night he started peeing on his own.
Wound care came today and brought us some special dressings for the old site. One that is made with silver (as an antimicrobial) and Mepilex to cover over that. We're going to try that overnight and see how it looks in the morning. I haven't seen the incision site yet on his belly. The dressing completely covers it so i'm hoping the doc will be changing it soon as it's pretty bloody and i'll get a chance to look at that. With his history of infections with incision site's I don't think they want to expose it too soon.
The plan is also to begin feeding him tomorrow as well. We'll start VERY slow feedings and see how he tolerates them. That will begin to give us a better idea of how long we'll be staying.
Thanks for checking in on us, I will update as soon as we know more.
Things are stable. He's had a few episodes of desatting into the 70's, no more funky heart rhythms this afternoon, but he still has to keep them on their toes. That's my kiddo.
He's been able to space out his morphine to about every 3 to 4 hours so he can be awake more often. Daddy brought Ryan, Kalei and Alissa to visit for a bit after school and he loved it.
He smiled for the first time in two days.
Thank goodness his IV is still holding and after he was cathed last night he started peeing on his own.
Wound care came today and brought us some special dressings for the old site. One that is made with silver (as an antimicrobial) and Mepilex to cover over that. We're going to try that overnight and see how it looks in the morning. I haven't seen the incision site yet on his belly. The dressing completely covers it so i'm hoping the doc will be changing it soon as it's pretty bloody and i'll get a chance to look at that. With his history of infections with incision site's I don't think they want to expose it too soon.
The plan is also to begin feeding him tomorrow as well. We'll start VERY slow feedings and see how he tolerates them. That will begin to give us a better idea of how long we'll be staying.
Thanks for checking in on us, I will update as soon as we know more.
It's Finally over, Sort Of
Sorry I wasn't able to update earlier, it's been a busy day.
We arrived for surgery at 7am this morning. V was something else, he danced and ran all over pre-op. He peek-a-boo'd me half to death. I was wiped out. But happy that he was able to enjoy his final pre surgery hours.
Just before 9am the surgical nurse came to escort V back to the O.R.
As always she put out her arms to carry my little snuggle bug to the back, and was greeted with an enthusiastic.. No!
He was decidedly NOT interested.
After some sweet talking he finally agreed to go but he was going to walk like a big boy for the first time. So I put on his little red socks with the sticky treads and off he went. Holding the nurses hand and waving bye bye with a big smile.
I was kicking myself for forgetting the camera... Grrr!
Daddy's going to bring it tomorrow.
Surgery took close to two hours and he stayed in recovery for nearly that long after.
The PACU advised me that any time they tried to stimulate him awake his heart rhythm became "funky". So they decided to wrap him in a warm blanket and post a "hands off!" sign while he slept off the anesthesia.
Due to the funky heart episodes Dr.P wants him monitored more closely so he was admitted into the Special Care Unit, an ICU stepdown.
No complaints here. Not only is the Special Care staff uber capable of managing V's recovery, but the rooms on this unit are basically medically glorified hotel rooms... comfy.
V on the other hand is NOT at this point comfy. Dr.P opened the lower half of his belly and removed the GJ tube and closed off the original stoma. He was only able to close it on the stomach level, the skin depth of the tract will have to close on it's own. The skin is way to jagged to suture. He sent for a consult for wound care to see us tomorrow.
Just below that he placed the new G tube. For now it's just the long tube that's sutured in, but it looks really good.
He did wake up after we got into his room and was in pain. He immediately tried to roll and pulled his belly sutures causing some scary bleeding, but it's slowing.
For now he's getting morphine every 2 hours and tylenol with codeine as needed, so his pain is under better control.
He is also getting zofran for nausea, benadryl for the morphine itchies, and his beloved prevacid.
Plus he's getting two antibiotics.
He did have to be catheterized this evening after not making urine for 8 hours. He's been on fluids all day and got a huge IV bolus but no dice. They did wait until after the morphine dose to do it so he didn't really seem to mind it much. I'm sure he's more comfortable now, he really needed to pee. Hopefully things will fall into place there.
We're watching his IV since supermom forgot to remind anesthesia to place two lines for access. The one they did manage to get is SUPER positional in his wrist and we've almost lost it a number of times. Usually they always place his lines in the O.R. to lessen the torture factor as V has very little peripheral access left. I hate to have IV's placed on the floor. They really do try but after they fail over and over, they usually have to call in a NICU or flight nurse to place one in some ultra uncomfortable spot... ugh.
The plan for now is that V will be kept NPO (nothing by mouth) for two days, then they will gradually start feeds and when he is able to handle them well we can go home, barring any complications. Dr.P has assured me that he's learned his lesson when it comes to V. Take it slow!!!
I really like him.. alot.
Hopefully I'll be able to get some pics tomorrow, say a prayer for a peaceful night. I'll update again in the morning.
Sweet dreams and thank you so much for all the love!
We arrived for surgery at 7am this morning. V was something else, he danced and ran all over pre-op. He peek-a-boo'd me half to death. I was wiped out. But happy that he was able to enjoy his final pre surgery hours.
Just before 9am the surgical nurse came to escort V back to the O.R.
As always she put out her arms to carry my little snuggle bug to the back, and was greeted with an enthusiastic.. No!
He was decidedly NOT interested.
After some sweet talking he finally agreed to go but he was going to walk like a big boy for the first time. So I put on his little red socks with the sticky treads and off he went. Holding the nurses hand and waving bye bye with a big smile.
I was kicking myself for forgetting the camera... Grrr!
Daddy's going to bring it tomorrow.
Surgery took close to two hours and he stayed in recovery for nearly that long after.
The PACU advised me that any time they tried to stimulate him awake his heart rhythm became "funky". So they decided to wrap him in a warm blanket and post a "hands off!" sign while he slept off the anesthesia.
Due to the funky heart episodes Dr.P wants him monitored more closely so he was admitted into the Special Care Unit, an ICU stepdown.
No complaints here. Not only is the Special Care staff uber capable of managing V's recovery, but the rooms on this unit are basically medically glorified hotel rooms... comfy.
V on the other hand is NOT at this point comfy. Dr.P opened the lower half of his belly and removed the GJ tube and closed off the original stoma. He was only able to close it on the stomach level, the skin depth of the tract will have to close on it's own. The skin is way to jagged to suture. He sent for a consult for wound care to see us tomorrow.
Just below that he placed the new G tube. For now it's just the long tube that's sutured in, but it looks really good.
He did wake up after we got into his room and was in pain. He immediately tried to roll and pulled his belly sutures causing some scary bleeding, but it's slowing.
For now he's getting morphine every 2 hours and tylenol with codeine as needed, so his pain is under better control.
He is also getting zofran for nausea, benadryl for the morphine itchies, and his beloved prevacid.
Plus he's getting two antibiotics.
He did have to be catheterized this evening after not making urine for 8 hours. He's been on fluids all day and got a huge IV bolus but no dice. They did wait until after the morphine dose to do it so he didn't really seem to mind it much. I'm sure he's more comfortable now, he really needed to pee. Hopefully things will fall into place there.
We're watching his IV since supermom forgot to remind anesthesia to place two lines for access. The one they did manage to get is SUPER positional in his wrist and we've almost lost it a number of times. Usually they always place his lines in the O.R. to lessen the torture factor as V has very little peripheral access left. I hate to have IV's placed on the floor. They really do try but after they fail over and over, they usually have to call in a NICU or flight nurse to place one in some ultra uncomfortable spot... ugh.
The plan for now is that V will be kept NPO (nothing by mouth) for two days, then they will gradually start feeds and when he is able to handle them well we can go home, barring any complications. Dr.P has assured me that he's learned his lesson when it comes to V. Take it slow!!!
I really like him.. alot.
Hopefully I'll be able to get some pics tomorrow, say a prayer for a peaceful night. I'll update again in the morning.
Sweet dreams and thank you so much for all the love!
Tuesday, September 1, 2009
It's Almost Here...
Tomorrow is the big day. We will wake up at 4:30am and head for Arnold Palmer Hospital for Children. We've made this trip so many times in the last 4 years. It almost seems unimaginable.
The hospital surgery department liason called this afternoon to update V's chart. She commented more than once about how calm I seemed about the whole thing. I told her that I am no where near calm, it's just that we've done this so many times before, it's just a part of life now. Still scary as hell, but a part of life.
We've come to know every inch of that place. It's become like a second home.
*sigh*
So tomorrow morning we will make the trek once again, bring our son "home" again. Trust that when we pass him over into their capable hands, all will be well.. again.
I was a bit shocked when the nurse mentioned that Dr.P has a full 2 1/2 hours set aside for V's procedure. We knew it wasn't going to be a simple surgery, but wow.
I guess considering his history I shouldn't be surprised. They've learned by now that nothing is ever routine when it comes to my baby. I'm glad they are prepared to take their time and get this right. We need this to work. HE needs this to work.
It's going to be a tough week all around. With the kids in school, Daddy has to make sure they get where they need to be while I tend to the munchkin. Wish him luck.
I would love to have done this a month ago during the summer but since V's surgeries have to be done in the cardiac O.R. with the cardiac surgery team, you go when they say you go.
Believe it or not, there's only one pediatric cardiac team in central Florida.
If it can't be handled here, all the heart kids have to go down to Miami Children's.
So.. when they say "jump".. we "jump".
Say a prayer for my baby please. Prayers for a smooth surgery and a quick recovery. Pray that this works.. please.
If he handles everything well we should be home by the weekend. I'll do my best to keep everyone posted.
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