This is the first time we've been hospitalized for Halloween, and I'm a little sad that we're missing our neighbors and the trick or treating, but compared to some of my past posts, Caelen is doing well. So this is hopefully our only Halloween in the hospital. The floor is having a party today and Aunt Michelle sent up decorations for the event, and Aunt Jen made Caelen an impromptu Brobee costume from Yo Gabba Gabba. We have plenty of candy to give out and bags to collect too. Unfortunately Caelen doesn't eat candy, so I'll have to step up and eat it for him. It's the tough things like this that make me good at being a mom ;)
On to Caelen. He developed another infection in his incision and his picc line went bad again. But here's the silver lining : instead of having to go to the OR this morning and get intubated and possibly have his chest opened again, Dr Spray felt that the infection could be drained bedside. And so it was, and it was done by 9:15. The picc line is unfortunate, and he needs access, so he went back to IR again this morning and is there now. He really doesn't have any access left, so I'm praying they find something. But, they let me walk all the way down to IR this morning, even in the elevator and into the bowels of the hospital until he was sedated with ketamine outside the door (his 2nd dose today). He watched Gabba the whole time on his iPad. That definitely helped. Plus, we are getting all of this done before noon. Yay for small miracles.
On a sad note, Please say a prayer for one of our heart friends, Jaclyn. She had a seizure at her school Halloween party this morning and was transported to the hospital by ambulance. I don't have any more details, but she's a fighter like Caelen, so please keep Jaclyn and her family in your thoughts.
Happy Halloween everyone and safe trick or treating.
Love,
Katye
Wednesday, October 31, 2012
Monday, October 29, 2012
Frankenstorm
The winds are getting pretty intense right now but it's hard to see from our room. We back to another building with a construction site caddy corner. But we can see the street lights and signs whipping in the wind. The hospital has power, hot food, staff and wifi. We lost the hot water but I think we'll survive.
The bridges and highways are all closed so some so the day nurses couldn't get home, but looks like most of night shift did arrive. There are 3 giant cranes across the street and we've been watching them since last night. They're really my only worry. We just started hearing some loud bangs from outside so not sure what it was, but the cranes are moving appropriately in the wind. Well, that's what Jen keeps saying anyway. She has some history with them, so I'm gonna go with her on this one. Besides, she's closest to the window ;)
As for Caelen, he's doing well. He weaned of the nitric oxide last night and is down to 4 liters of hi flow (down from 12). The cath lab is not forgotten, but not imminent either. He got out in the wagon a record 3 times today!! So much easier without nitric. He had a better day too as far as mood and laughter go, so all in all, a success.
Poor Jen did get stuck here though with all the weather. Seriously, who leaves the safety of Florida to fly into a hurricane? Only a Herron. Did I mention she works for a power company that just shipped 500 employees up here to help clean up? She's supposed to be behind a desk, not in the thick of it. Well that'll teach her to come to Philly during hurricane season.
Love to all as we try and sleep and forget about the giant cranes swinging in the near distance.
The bridges and highways are all closed so some so the day nurses couldn't get home, but looks like most of night shift did arrive. There are 3 giant cranes across the street and we've been watching them since last night. They're really my only worry. We just started hearing some loud bangs from outside so not sure what it was, but the cranes are moving appropriately in the wind. Well, that's what Jen keeps saying anyway. She has some history with them, so I'm gonna go with her on this one. Besides, she's closest to the window ;)
As for Caelen, he's doing well. He weaned of the nitric oxide last night and is down to 4 liters of hi flow (down from 12). The cath lab is not forgotten, but not imminent either. He got out in the wagon a record 3 times today!! So much easier without nitric. He had a better day too as far as mood and laughter go, so all in all, a success.
Poor Jen did get stuck here though with all the weather. Seriously, who leaves the safety of Florida to fly into a hurricane? Only a Herron. Did I mention she works for a power company that just shipped 500 employees up here to help clean up? She's supposed to be behind a desk, not in the thick of it. Well that'll teach her to come to Philly during hurricane season.
Love to all as we try and sleep and forget about the giant cranes swinging in the near distance.
Saturday, October 27, 2012
Lazy Saturday
Caelen's oxygen sats are actually better today. He had a good night last night and we are working hard today to get him to cough and dry his lungs out. His right chest tube was clogged and not draining well, but the team came in and fixed that, then he dumped 105 cc's, so that certainly helped his afternoon X-ray.
His oxygen was weaned down a bit today too. The thought is that the oxygen isn't really helping him all that much because of the leakage around the shunt. But we're keeping it on just to be safe.
We got more smiles out of Caelen again today, and he ate a few ice chips, along with tiny sips of water. That's pretty much all he constantly asks for, water and juice.
The plan for cath hasn't been finalized, but still likely for this week. Frankenstorm is also going to figure into the planning.
That's pretty much it for today. We are watching the storm and trying to figure out what's going to happen. Hope everyone on the east coast stays safe.
His oxygen was weaned down a bit today too. The thought is that the oxygen isn't really helping him all that much because of the leakage around the shunt. But we're keeping it on just to be safe.
We got more smiles out of Caelen again today, and he ate a few ice chips, along with tiny sips of water. That's pretty much all he constantly asks for, water and juice.
The plan for cath hasn't been finalized, but still likely for this week. Frankenstorm is also going to figure into the planning.
That's pretty much it for today. We are watching the storm and trying to figure out what's going to happen. Hope everyone on the east coast stays safe.
Thursday, October 25, 2012
Quick and dirty
I haven't felt like updating because there's a lot of complicated stuff going on, but here's the gist.
It doesn't take up to 6 weeks for the shunt to clot off. Don't know where I got that from. It should have clotted by now, but the lovenox (blood thinner) is preventing it. So the o2 sats are lower because the de-oxygenated blood is leaking around the shunt.
Also, his lungs are full of crap, and partially collapsed. That's not the real term, but I'm too tired to type out alveoli and the explanation. So his sats are low bc his lungs aren't fully inflated. We're trying to get him up and out of bed and moving as much as possible.
Next, Dr Rome, or Mr doom and gloom as I now call him, wanted to take Caelen back to cath lab tomorrow and fix the leakage. I said no. I asked for the weekend to try and make Caelen stronger. So that's the plan for early next week, back to cath. Ugh.
He has a blood clot from the picc line, so he's going back to IR tomorrow to get the old one out and place a new one. Hence the blood thinners, but the lovenox is on hold for a few days to try and make the shunt clot.
Now you see why I didn't post. Too much gloom to type out. BUT, we got our first smiles out of Caelen yesterday and lots more today. So that to me trumps all the crap. Dad flew home today and my sister Jen just arrived. So plenty of chaos will continue.
Prayers, please keep saying them. I think the biggest issue now is the lungs, we've gotta get them back up and open. The shunt needs to clot, and the the clot in his arm needs to dissolve. Quite the conundrum. But he's still extubated, so small miracles.
Alright, bed time.
Love,
Katye
It doesn't take up to 6 weeks for the shunt to clot off. Don't know where I got that from. It should have clotted by now, but the lovenox (blood thinner) is preventing it. So the o2 sats are lower because the de-oxygenated blood is leaking around the shunt.
Also, his lungs are full of crap, and partially collapsed. That's not the real term, but I'm too tired to type out alveoli and the explanation. So his sats are low bc his lungs aren't fully inflated. We're trying to get him up and out of bed and moving as much as possible.
Next, Dr Rome, or Mr doom and gloom as I now call him, wanted to take Caelen back to cath lab tomorrow and fix the leakage. I said no. I asked for the weekend to try and make Caelen stronger. So that's the plan for early next week, back to cath. Ugh.
He has a blood clot from the picc line, so he's going back to IR tomorrow to get the old one out and place a new one. Hence the blood thinners, but the lovenox is on hold for a few days to try and make the shunt clot.
Now you see why I didn't post. Too much gloom to type out. BUT, we got our first smiles out of Caelen yesterday and lots more today. So that to me trumps all the crap. Dad flew home today and my sister Jen just arrived. So plenty of chaos will continue.
Prayers, please keep saying them. I think the biggest issue now is the lungs, we've gotta get them back up and open. The shunt needs to clot, and the the clot in his arm needs to dissolve. Quite the conundrum. But he's still extubated, so small miracles.
Alright, bed time.
Love,
Katye
Tuesday, October 23, 2012
Extubated
Caelen extubated last night and is on hi flow oxygen. His sats are still in the low 70's but he's not a blueberry anymore, and he's de-puffed by half! Literally, it's a night and day difference. He peed out almost a liter last night.
Aside from tweaking of meds, Caelen is doing well today. Much more comfortable. The plan is slowly wean his hi flow oxygen to regular oxygen and then off. His lungs are still wet so we have a lot of work to do on them. But hey, he's extubated!!!
Dr Spray stopped by and checked on him. I guess he's the one that made the call to take down fontan immediately last week. Did I mention that he was in China last week? He was following Caelen and a few others daily. I love this man. He also said not to give up on the fontan yet. Caelen's lungs need to get bigger and stronger before we look at anything in the future. But he said don't give up yet.
Again, I love this man.
Please say extra prayers for our new friend George today. He's in the OR now and needs all the prayers he can get. Say a prayer for his mom Julie too. She's here alone for the time being until family comes back from Minneapolis, and she's dealing with things none of us would ever want to.
Thank you :)
Katye
Aside from tweaking of meds, Caelen is doing well today. Much more comfortable. The plan is slowly wean his hi flow oxygen to regular oxygen and then off. His lungs are still wet so we have a lot of work to do on them. But hey, he's extubated!!!
Dr Spray stopped by and checked on him. I guess he's the one that made the call to take down fontan immediately last week. Did I mention that he was in China last week? He was following Caelen and a few others daily. I love this man. He also said not to give up on the fontan yet. Caelen's lungs need to get bigger and stronger before we look at anything in the future. But he said don't give up yet.
Again, I love this man.
Please say extra prayers for our new friend George today. He's in the OR now and needs all the prayers he can get. Say a prayer for his mom Julie too. She's here alone for the time being until family comes back from Minneapolis, and she's dealing with things none of us would ever want to.
Thank you :)
Katye
Monday, October 22, 2012
Extubation on hold to fix the PICC line
He was scheduled for extubation today but then his PICC line started leaking. So we are waiting to go to IR to get it fixed, and he has to be intubated for the sedation. Luckily it's not general anesthesia this time.
So, hopefully tomorrow is extubation. In the meantime, we're just hanging out and watching Caelen sleep, watching the monitors, lol.
Thank you again for the prayers, hopefully I'll have something more exciting to report tomorrow.
Last but not least, a big thank you to he Shearer's for the care package that arrived today. I can't wait to spray Martin with silly string next time he snores ;)
So, hopefully tomorrow is extubation. In the meantime, we're just hanging out and watching Caelen sleep, watching the monitors, lol.
Thank you again for the prayers, hopefully I'll have something more exciting to report tomorrow.
Last but not least, a big thank you to he Shearer's for the care package that arrived today. I can't wait to spray Martin with silly string next time he snores ;)
Sunday, October 21, 2012
It's just cosmetic
I was just asking the nurse why she thinks Caelen's face looks blue, and she said its probably the shunted blood. He just has so much de-oxygenated blood right now, that until that shunt totally clots off he's going to be on the bluer side. She said, "structurally, he's fine." So I laughed and said, it's just cosmetic, kind of like a retaining wall with a big crack. Structurally, it's fine, but unnerving to see.
My sense of humor is getting more pathetic, I know.
But you're here for a Caelen update, so on to it. He is still having these random desaturating moments, and at times we have to go back up on the oxygen. He'll do really well on lower vent settings, well enough to extubate, and then there's an episode and the tube has to stay in. The good news is that the junk coming out of his lungs is a lot thinner and stuff that he can cough up once extubated. So this means his lungs are healing from the plastic bronchitis. But there's no data to show just how long it will take to clear. Kind of like his chronic lung disease. At some point, he'll be discharged home but his lungs will still be healing.
And for those that have been asking, discharge and timing are not conversations anyone has. We take each day as they come. Caelen has taught us that he doesn't do anything according to plan, so the team doesn't give us time frames on anything.
He's being kept sedated most of the day because he fights when awake and tries to pull out his breathing tube. But he isn't paralyzed, so he still wakes appropriately with care. I'm sure we've set ourselves up for another wean, but we've done it before and we can do it again.
So that's it. We're sitting around staring at Caelen and monitors and I've read all of his books too many times to count. I'm sure he's having crazy trippy halloween dreams.
Thanks to all for the care packages and books. Please keep praying.
Love,
Katye
My sense of humor is getting more pathetic, I know.
But you're here for a Caelen update, so on to it. He is still having these random desaturating moments, and at times we have to go back up on the oxygen. He'll do really well on lower vent settings, well enough to extubate, and then there's an episode and the tube has to stay in. The good news is that the junk coming out of his lungs is a lot thinner and stuff that he can cough up once extubated. So this means his lungs are healing from the plastic bronchitis. But there's no data to show just how long it will take to clear. Kind of like his chronic lung disease. At some point, he'll be discharged home but his lungs will still be healing.
And for those that have been asking, discharge and timing are not conversations anyone has. We take each day as they come. Caelen has taught us that he doesn't do anything according to plan, so the team doesn't give us time frames on anything.
He's being kept sedated most of the day because he fights when awake and tries to pull out his breathing tube. But he isn't paralyzed, so he still wakes appropriately with care. I'm sure we've set ourselves up for another wean, but we've done it before and we can do it again.
So that's it. We're sitting around staring at Caelen and monitors and I've read all of his books too many times to count. I'm sure he's having crazy trippy halloween dreams.
Thanks to all for the care packages and books. Please keep praying.
Love,
Katye
Saturday, October 20, 2012
Mini crisis averted
Caelen's o2 sats are still sitting in the low 70's and at times, upper 60's. The docs were worried that he still has leakage around the shunt placed to "block" the Fontan and that is what is causing the lower sats. They did an echo and found significant leakage. The good news is we have an answer and its fixable. The mini crisis on my end was how they were going to fix it.
There's 2 main ways to address this:
1. Time. Give Caelen more time to clot off the flow and block it.
2. Go back to the OR and open his chest to completely take down the Fontan.
Thankfully, Dr Rome, the cath Dr answered his phone on a Saturday, and he said that he expected this because Caelen left the cath lab with leakage, and it can take up to 6 weeks to clot off. Surgery is not off the table, but we're not close to that option now. Dr Rome felt that Caelen just needs time and that this wont affect him being extubated or going home.
Now don't go getting excited about the home word yet. We have some work to do on his lungs and rehabbing them. But once again, Caelen has proven that time is his friend and that's what he needs. And that's ok. We're only 1 month in and compared to the Glenn, well, the first Glenn, one month is easy. Whatever it takes to get my beautiful angel back home, then that's what we'll do.
On a side note, I met a new heart mom the other day and we've exchanged numbers. So I'm making new friends here and finding people to laugh with. It's also a big bonus that she likes wine ;) So I'm sure we'll find a nite when our kids fall asleep and sneak out for a glass. Her son's name is George and like Caelen, he's had a rough go of it. So if you wouldn't mind adding George to your prayer list, I'd be very appreciative. I haven't met him yet, but his mom Julie says he's beautiful. In fact, she tells him that God spent so much time on his face that he ran out of time for his heart. Lol!!! Judging by how pretty his parents are, I'd guess he really is a good looking boy. I love that through all of this, she maintains her sense of humor.
Ok, time to sign off. As always, thanks for your continued love, support and prayers. Please pray for the shunt to clot off and Caelen's sats to improve, and please pray for his puffiness to go away. Or in general, a full, miraculous healing :)
Love,
Katye
There's 2 main ways to address this:
1. Time. Give Caelen more time to clot off the flow and block it.
2. Go back to the OR and open his chest to completely take down the Fontan.
Thankfully, Dr Rome, the cath Dr answered his phone on a Saturday, and he said that he expected this because Caelen left the cath lab with leakage, and it can take up to 6 weeks to clot off. Surgery is not off the table, but we're not close to that option now. Dr Rome felt that Caelen just needs time and that this wont affect him being extubated or going home.
Now don't go getting excited about the home word yet. We have some work to do on his lungs and rehabbing them. But once again, Caelen has proven that time is his friend and that's what he needs. And that's ok. We're only 1 month in and compared to the Glenn, well, the first Glenn, one month is easy. Whatever it takes to get my beautiful angel back home, then that's what we'll do.
On a side note, I met a new heart mom the other day and we've exchanged numbers. So I'm making new friends here and finding people to laugh with. It's also a big bonus that she likes wine ;) So I'm sure we'll find a nite when our kids fall asleep and sneak out for a glass. Her son's name is George and like Caelen, he's had a rough go of it. So if you wouldn't mind adding George to your prayer list, I'd be very appreciative. I haven't met him yet, but his mom Julie says he's beautiful. In fact, she tells him that God spent so much time on his face that he ran out of time for his heart. Lol!!! Judging by how pretty his parents are, I'd guess he really is a good looking boy. I love that through all of this, she maintains her sense of humor.
Ok, time to sign off. As always, thanks for your continued love, support and prayers. Please pray for the shunt to clot off and Caelen's sats to improve, and please pray for his puffiness to go away. Or in general, a full, miraculous healing :)
Love,
Katye
Friday, October 19, 2012
Post cath/Glenn-tan
Glenn-tan. I'm stealing this from my heart friend Lori who also has a daughter with HLHS, and she is a Fontan take down too. She calls Rosie a Glenn-tan. So that's our new word.
Caelen had a decent night. He was sleeping comfortably until around 4 and then decided he wasn't having all of this intubation, chest tubes, IV's, etc. They gave him a lot of rescue doses of sedatives and decided to add another drip to keep him calm. It took a while to kick in and he gave the morning nurses quite a workout.
The plan for today is to just let him heal and rest. His oxygen is a little low, 73, but his blood gasses are good and he's even slightly over ventilated. This could be from the plastic bronchitis still, but he is being aggressively suctioned and they are pulling a lot of mucus and junk out of his lungs. It could also be from the trauma and drama of yesterday. So rest today is the best thing for him.
I wanted to share a story with you from last night. As we were waiting for the 2nd round of the cath and getting very mad at God, a father and his 5 year old daughter (who is a patient) walked by and said, "you look like you need a friend." He then went on to tell us how the doctors told him that his daughter Emma wouldn't make it, and when she did, that she'd never walk or talk. We've seen her walking the halls for days now and let me tell you, she can walk and talk. She told us funny stories and then went back to her room to rest. Then they came back again with 2 plastic spider rings, one for mom and one for me. Emma told us that they are for good luck. So mom and I have been wearing them since last night. But Emma also sat and told us 10 jokes. And she counted each one. They were exactly what we needed at that very moment in time.
Just as we were getting mad and cursing God for letting this happen to Caelen, he sent 2 angels to come and take care of us. It was at that point that I knew that Caelen would be ok. So although we can't understand God's plan for Caelen, I know He has one. I realize now that it's not my job to question God. My job is to be Caelen's mom and do the best that I can. God will take care of the rest.
Thanks again for the prayers. Caelen is still critical, but I believe that he will overcome this. Please keep praying.
Love,
Katye
Caelen had a decent night. He was sleeping comfortably until around 4 and then decided he wasn't having all of this intubation, chest tubes, IV's, etc. They gave him a lot of rescue doses of sedatives and decided to add another drip to keep him calm. It took a while to kick in and he gave the morning nurses quite a workout.
The plan for today is to just let him heal and rest. His oxygen is a little low, 73, but his blood gasses are good and he's even slightly over ventilated. This could be from the plastic bronchitis still, but he is being aggressively suctioned and they are pulling a lot of mucus and junk out of his lungs. It could also be from the trauma and drama of yesterday. So rest today is the best thing for him.
I wanted to share a story with you from last night. As we were waiting for the 2nd round of the cath and getting very mad at God, a father and his 5 year old daughter (who is a patient) walked by and said, "you look like you need a friend." He then went on to tell us how the doctors told him that his daughter Emma wouldn't make it, and when she did, that she'd never walk or talk. We've seen her walking the halls for days now and let me tell you, she can walk and talk. She told us funny stories and then went back to her room to rest. Then they came back again with 2 plastic spider rings, one for mom and one for me. Emma told us that they are for good luck. So mom and I have been wearing them since last night. But Emma also sat and told us 10 jokes. And she counted each one. They were exactly what we needed at that very moment in time.
Just as we were getting mad and cursing God for letting this happen to Caelen, he sent 2 angels to come and take care of us. It was at that point that I knew that Caelen would be ok. So although we can't understand God's plan for Caelen, I know He has one. I realize now that it's not my job to question God. My job is to be Caelen's mom and do the best that I can. God will take care of the rest.
Thanks again for the prayers. Caelen is still critical, but I believe that he will overcome this. Please keep praying.
Love,
Katye
Thursday, October 18, 2012
He's back
It was a long double process. Basically the plug that they used to occlude the fontan wasn't enough to block the blood flow, so they put in 20 platinum coils to block it and block off the fontan.
The good news is he's back in his room and we are seeing him for the first time since 2:00 pm. He's puffy but that's to be expected. He still has to recover now from this surgery, so here we go again.
The downside is that Caelen is most likely not a candidate to try the Fontan again. So heart transplant is going to be the next option. But that's not in our near future. So for right now, Caelen made it past this hurdle and I couldn't be happier.
Thank you all and please keep praying.
Love,
Katye
The good news is he's back in his room and we are seeing him for the first time since 2:00 pm. He's puffy but that's to be expected. He still has to recover now from this surgery, so here we go again.
The downside is that Caelen is most likely not a candidate to try the Fontan again. So heart transplant is going to be the next option. But that's not in our near future. So for right now, Caelen made it past this hurdle and I couldn't be happier.
Thank you all and please keep praying.
Love,
Katye
Cath - just got access
They just got access 20 minutes ago. So it's going to be another hour before we get an update. Please pray.
Cath not finished
The fellow just came out to tell us that the cath was over, but Caelen's oxygen sats were too low, so they are thinking that the stint they placed may have shifted, may not be big enough, or something else. They probably have to to go back in, which means getting set up and gaining access again. So it's going to be a while before we hear anything.
We did hear that his blood pressure was good and that he got 2 new pigtail chest tubes for pleural effusions.
Please keep praying, I think it's going to be a long night.
We did hear that his blood pressure was good and that he got 2 new pigtail chest tubes for pleural effusions.
Please keep praying, I think it's going to be a long night.
Wednesday, October 17, 2012
Taking down the Fontan tomorrow
So Caelen doesn't like his Fontan. Thats the bottom line and that sucks!
The plastic bronchitis is a direct result of the Fontan and a clear indicator that the Fontan just isn't working for him. It's also the last straw I think. So Caelen is going to the cath lab tomorrow around 1:30 to have his Fontan functionally taken down. They will be occluding between the Fontan and the SVC and stenting open the fenestration. Functionally making him a Glenn again. Blood flow from the IVC will shunt through the stented fenestration to the body. The SVC will still feed the lungs.
Dr Rome will be doing the cath and he is the head of the cath team. There are certainly risks associated, blood clotting being a big one, but it is safer to do this via cath lab then back in the OR. They will have to go thru hepatic access though, which means making an incision through his side and going thru his liver. This is the only way to access the Fontan in the manner they need to since his femoral access is all occluded.
Please keep praying for Caelen. This is obviously not what we wanted, but right now it's our only option. Caelen can potentially go several more years as a Glenn again before we have to reattempt the Fontan. Please also pray that he stays stable tonight. The plastic bronchitis is causing major problems right now and the casts are blocking airways. Please pray for the bronchitis to heal and his lungs to heal.
Thank you,
Katye
The plastic bronchitis is a direct result of the Fontan and a clear indicator that the Fontan just isn't working for him. It's also the last straw I think. So Caelen is going to the cath lab tomorrow around 1:30 to have his Fontan functionally taken down. They will be occluding between the Fontan and the SVC and stenting open the fenestration. Functionally making him a Glenn again. Blood flow from the IVC will shunt through the stented fenestration to the body. The SVC will still feed the lungs.
Dr Rome will be doing the cath and he is the head of the cath team. There are certainly risks associated, blood clotting being a big one, but it is safer to do this via cath lab then back in the OR. They will have to go thru hepatic access though, which means making an incision through his side and going thru his liver. This is the only way to access the Fontan in the manner they need to since his femoral access is all occluded.
Please keep praying for Caelen. This is obviously not what we wanted, but right now it's our only option. Caelen can potentially go several more years as a Glenn again before we have to reattempt the Fontan. Please also pray that he stays stable tonight. The plastic bronchitis is causing major problems right now and the casts are blocking airways. Please pray for the bronchitis to heal and his lungs to heal.
Thank you,
Katye
Plastic Bronchitis
Caelen had a bad night again. He was struggling to breathe and had to be suctioned several times. In that process, they pulled out mucus casts and pretty much knew that it was plastic bronchitis. You can google it. He has been reintubated and is breathing comfortably now, but he's not out of the woods. The team is still in his room trying to get a blood pressure and they are going to place another arterial line.
His blood gas was not acid odic but his co2 was high. So it's going to be another roller coaster day.
Please pray that Caelen overcomes this latest hurdle unscathed. Please pray for the team to clear up the plastic bronchitis, and please pray for his lungs to heal and his heart to accept the Fontan.
His blood gas was not acid odic but his co2 was high. So it's going to be another roller coaster day.
Please pray that Caelen overcomes this latest hurdle unscathed. Please pray for the team to clear up the plastic bronchitis, and please pray for his lungs to heal and his heart to accept the Fontan.
Monday, October 15, 2012
Bye bye chest tubes, hello oxygen
We started the day with a major plus in getting both chest tubes out today. Woo hoo!! Stay away drainage.
But we also went back on oxygen last night because Caelen was working too hard to breathe. He's only on 1 liter of o2, and he probably doesn't need that much, but until his lungs dry out and he can fully inflate them with deep breaths, I don't want him to struggle. So oxygen it is for right now.
The docs want Caelen up and out of bed as much as he can now that the chest tubes are out, and we took 2 rides today in the wagon, and 2 walks in the halls. The only thing that's really going to help the lungs now is to get up and get moving. So each day we are hoping that Caelen will get a little stronger so we can stay out of bed longer.
And on a mixed note, our new friends The Millers, started their drive back to Alabama today. I say mixed because I am so excited that they are finally going home for the first time in 2 months, but I'm sad because I really enjoyed spending time with their beautiful family and getting to know each of them. Their 2 daughters gave me many a good laughs and big smiles which were always exactly what I needed. Not to mention giant chokeholds from Carys. I am sad to see my new friends go, but I am overjoyed for this new time for them together on the "outside." Please pray that they have safe travels back to Alabama, and that their time between the 1st surgery and the Glenn in a few months is healthy and uneventful.
Thank you all again for the wonderful messages of support and prayers. Thanks for helping me see the sunny side when I sometimes can't. And thanks to all who send care packages and love.
Katye
But we also went back on oxygen last night because Caelen was working too hard to breathe. He's only on 1 liter of o2, and he probably doesn't need that much, but until his lungs dry out and he can fully inflate them with deep breaths, I don't want him to struggle. So oxygen it is for right now.
The docs want Caelen up and out of bed as much as he can now that the chest tubes are out, and we took 2 rides today in the wagon, and 2 walks in the halls. The only thing that's really going to help the lungs now is to get up and get moving. So each day we are hoping that Caelen will get a little stronger so we can stay out of bed longer.
And on a mixed note, our new friends The Millers, started their drive back to Alabama today. I say mixed because I am so excited that they are finally going home for the first time in 2 months, but I'm sad because I really enjoyed spending time with their beautiful family and getting to know each of them. Their 2 daughters gave me many a good laughs and big smiles which were always exactly what I needed. Not to mention giant chokeholds from Carys. I am sad to see my new friends go, but I am overjoyed for this new time for them together on the "outside." Please pray that they have safe travels back to Alabama, and that their time between the 1st surgery and the Glenn in a few months is healthy and uneventful.
Thank you all again for the wonderful messages of support and prayers. Thanks for helping me see the sunny side when I sometimes can't. And thanks to all who send care packages and love.
Katye
Sunday, October 14, 2012
Hanging out
We're still just hanging out in the ICU. No big changes this weekend, just a few minor ones. Caelen's heart rate and respiratory rate are increased and the docs aren't sure why. They did another echo to look at the fluid around his heart and said it hasn't increased and its not the culprit. His lungs are still wet and that could be what's contributing to the rapid breathing. He's also coming down with something, I hope it's just a cold. He has been downright cranky the last few days but perked up this afternoon.
So overall we're really just hanging out waiting for the chest tubes to stop draining. They put out less than 3 ounces yesterday which is a huge improvement. So hopefully the effusions will stop soon. I'd love to get these chest tubes out so he can get up more and be more comfortable.
Praying that the docs can figure out this heart rate and respiratory rate thing soon.
Love,
Katye
So overall we're really just hanging out waiting for the chest tubes to stop draining. They put out less than 3 ounces yesterday which is a huge improvement. So hopefully the effusions will stop soon. I'd love to get these chest tubes out so he can get up more and be more comfortable.
Praying that the docs can figure out this heart rate and respiratory rate thing soon.
Love,
Katye
Friday, October 12, 2012
No sleep
Sorry I didn't update yesterday. Caelen has been awake the last 3 nights and I'm exhausted. My eyes are closing as I'm typing. I may leave tonight and go back to Ronald McDonald so I can sleep.
Anyway, Caelen is doing well besides the not sleeping. He is happier and transitioning back to feeds again. Speaking of, he developed chylis again which is a leakage in his lymphatic system. (Google chylothorax). It doesn't really show up until feeds get restarted. This happened after the Glenn too and we had to sit and wait out the drainage in the ICU. Same story here. He's been switched over to a special formula that greatly reduces the fat in his minimal diet. The hope is that it will lessen the chylis and chest tube leakage.
And Speaking of leakage, the chest tubes were putting out 2 liters a day a week ago, we finally hit 1 liter a few days ago, and yesterday it was only a half a liter. It's still a lot, but good progress is being made. We just hope that the chylis doesn't increase with the new formula.
Caelen is getting out of bed more and and sitting in the red wagon that is now on loan in our room. He watches movies in it and its great for his neck and trunk support. He's also talking a lot more and laughing a lot. So it's the little things like his personality coming back that make the sleep deprivation more tolerable. Thank goodness for my mom who has been on Caelen duty the last 2 days while I basically drag. She's been a huge help with entertaining and caring for Caelen.
That's it for now. We are holding the course and my little monster is back. I can't wait until he starts running the halls and terrorizing the nurses. Thank you again for the prayers, please keep praying for a full recovery and healing.
Lastly, a big thanks to Caelen's wonderful teachers, Mrs Ellen, Mrs Tammy and Mrs Mindy for the giant care packages that arrived today. Can't wait to dig in and play.
Love,
Katye
Anyway, Caelen is doing well besides the not sleeping. He is happier and transitioning back to feeds again. Speaking of, he developed chylis again which is a leakage in his lymphatic system. (Google chylothorax). It doesn't really show up until feeds get restarted. This happened after the Glenn too and we had to sit and wait out the drainage in the ICU. Same story here. He's been switched over to a special formula that greatly reduces the fat in his minimal diet. The hope is that it will lessen the chylis and chest tube leakage.
And Speaking of leakage, the chest tubes were putting out 2 liters a day a week ago, we finally hit 1 liter a few days ago, and yesterday it was only a half a liter. It's still a lot, but good progress is being made. We just hope that the chylis doesn't increase with the new formula.
Caelen is getting out of bed more and and sitting in the red wagon that is now on loan in our room. He watches movies in it and its great for his neck and trunk support. He's also talking a lot more and laughing a lot. So it's the little things like his personality coming back that make the sleep deprivation more tolerable. Thank goodness for my mom who has been on Caelen duty the last 2 days while I basically drag. She's been a huge help with entertaining and caring for Caelen.
That's it for now. We are holding the course and my little monster is back. I can't wait until he starts running the halls and terrorizing the nurses. Thank you again for the prayers, please keep praying for a full recovery and healing.
Lastly, a big thanks to Caelen's wonderful teachers, Mrs Ellen, Mrs Tammy and Mrs Mindy for the giant care packages that arrived today. Can't wait to dig in and play.
Love,
Katye
Wednesday, October 10, 2012
More lines gone
Happy Hump Day everyone! Caelen is continuing to progress a little more each day. Today he got his IJ line (big central catheter) out of his neck and tomorrow he is going to get his art line (arterial access for blood draws, pressures) out. He ate 6 bites of applesauce for me twice today and went for a bigger walk and longer wagon ride to the play room. He is still draining, but it seems like each day it slows a little more.
Last night during bath we took off his oxygen/nitric/hi flow cannula and he has maintained his sats since. It's so nice to see his little face without he oxygen. We're hoping that he will continue to maintain this :)
So we're happy with the progress and its still only 1:30.
Thanks again for all the wonderful messages, comments and likes, support and prayers. Caelen truly is a miracle and the best blessing I have ever received.
Love,
Katye
Last night during bath we took off his oxygen/nitric/hi flow cannula and he has maintained his sats since. It's so nice to see his little face without he oxygen. We're hoping that he will continue to maintain this :)
So we're happy with the progress and its still only 1:30.
Thanks again for all the wonderful messages, comments and likes, support and prayers. Caelen truly is a miracle and the best blessing I have ever received.
Love,
Katye
Tuesday, October 9, 2012
Post cath
There hasn't really been any changes today, except slight lowering of drainage, which is good. Our cardiologist came in today and said that they were going to give Caelen more time to drain and heal. Which is what we wanted. They are lowering his esmolol with a goal of weaning it off overnight. They will instead start a different type of beta blocker that can go they his stomach instead of IV. They have stopped the heparin and are stopping the bivalirudin overnight too. Instead he will be going back on lovenox twice daily injections. That kinda sucks. I know that Caelen needs it, but the thought of the injections again in a now 3 year old give me anxiety.
On the positive side, Caelen walked more today and went for a wagon ride. He's laughed a few times too. The wagon is in our room, so we can use it each day. It takes a team to walk the halls, but it was so amazing to get hin out of his room.
So each day we are making a little bit of progress, and that's fine by me. We still need the effusions to stop, he's down from draining 2 liters a day one week ago to a little over 1 liter per day. It would be better if it was zero, but I know that day will come.
Thanks again for all of the prayers. And thanks to the Millers for lunchtime fun. Baby Macsen looks amazing and the girls had Kelly and I laughing harder than we have in 2 weeks.
Love,
Katye
On the positive side, Caelen walked more today and went for a wagon ride. He's laughed a few times too. The wagon is in our room, so we can use it each day. It takes a team to walk the halls, but it was so amazing to get hin out of his room.
So each day we are making a little bit of progress, and that's fine by me. We still need the effusions to stop, he's down from draining 2 liters a day one week ago to a little over 1 liter per day. It would be better if it was zero, but I know that day will come.
Thanks again for all of the prayers. And thanks to the Millers for lunchtime fun. Baby Macsen looks amazing and the girls had Kelly and I laughing harder than we have in 2 weeks.
Love,
Katye
Monday, October 8, 2012
Cath is over
He's back and did fine. The dr was able to go thru his neck and no intervention was needed. The fenestration is open and has good flow and the fontan pressures were only slightly elevated. Physiologically there isn't anything wrong. So we're at a loss for answers.
I think Caelen just needs more time. His effusions lasted 9 weeks after the Glenn, not that I want that to happen again, but I really think he just needs more time.
Please pray, and please ask for these damn effusions to stop.
Thanks for all of your prayers for safety and healing for Caelen. We still need them.
Love,
Katye
I think Caelen just needs more time. His effusions lasted 9 weeks after the Glenn, not that I want that to happen again, but I really think he just needs more time.
Please pray, and please ask for these damn effusions to stop.
Thanks for all of your prayers for safety and healing for Caelen. We still need them.
Love,
Katye
In cath
Caelen just went into the cath lab. The Dr said it should take about 3 hours. So once I have an update I'll post.
Thank you for your prayers.
Love,
Katye
Thank you for your prayers.
Love,
Katye
Cath lab today
The team hasn't rounded yet but we are still 3rd case for the cath lab. They still think that the fenestration is closed and they need to open it to stop the effusions. He shouldn't still be draining this much this far out post op. I'll update once he goes into cath.
Please pray that the team can get easy access and that there are no complications. The threat of having to go thru the liver is still here, as well as clotting and difficulty reaching the fenestration.
Thank you. Love,
Katye
Please pray that the team can get easy access and that there are no complications. The threat of having to go thru the liver is still here, as well as clotting and difficulty reaching the fenestration.
Thank you. Love,
Katye
Sunday, October 7, 2012
1 chest tube down
Caelen got his original chest tube from the fontan out this morning and didn't even flinch. He still has the 2 side chest tubes (pigtails) that are draining quite a bit. Dr Spray came in this morning to check on Caelen (isn't he amazing) and said that he is sending Caelen back to cath lab tomorrow because he thinks Caelens fenestration closed, and if so, he needs to open it. If it is closed, that would explain the excess drainage.
Obviously we want anything that will help Caelen heal, but I hate that he has to go back under anesthesia and intubation again. Caelens vocal cords are swollen and he can't swallow water and juice right now because he is aspirating. So I'm scared of losing ground on the progress we've made with feeding and drinking. But on the bright side, he did take 5 bites of applesauce eagerly this morning, so that was excellent to watch. Once his stomach starts getting more food thru the tube, then we can try more solids.
In the meantime, Caelen has taken more steps today and we are working towards more PT each day. Caelen is talking more and expressing more as the meds are coming off.
Thank you again and please pray for these damn effusions to stop. We really don't want to go back to the OR again.
Love,
Katye
Obviously we want anything that will help Caelen heal, but I hate that he has to go back under anesthesia and intubation again. Caelens vocal cords are swollen and he can't swallow water and juice right now because he is aspirating. So I'm scared of losing ground on the progress we've made with feeding and drinking. But on the bright side, he did take 5 bites of applesauce eagerly this morning, so that was excellent to watch. Once his stomach starts getting more food thru the tube, then we can try more solids.
In the meantime, Caelen has taken more steps today and we are working towards more PT each day. Caelen is talking more and expressing more as the meds are coming off.
Thank you again and please pray for these damn effusions to stop. We really don't want to go back to the OR again.
Love,
Katye
Saturday, October 6, 2012
Caelen laughed!!!!
The day was pretty much the same until the afternoon. Caelen got out of bed again and walked twice, back and forth to the couch to sit with Mimi and watch a movie. After that he really started to kind of "wake up." He started talking more and using his arms and stomach muscles more to sit up.
Then we had a visit from one of our new heart friends, Aaron Miller (macsenthegrayt.blogspot.com) and he was telling us a story from earlier today about how his 6 yr old daughter accidentally got hand sanitizer in her eye. Next thing you know, Caelen is laughing!!! And he kept laughing, so we started laughing, and jumping for joy. Caelen is back!! We are all so excited I was grabbing staff from the halls :)
He's also becoming more ornery when the nurses mess with him. So again, more signs that Caelen is back :)
Thank you all for your prayers. They are working. There's still a lot of work to do with those damn effusions though, so please keep praying.
Also, I mentioned our friend Aaron earlier. He has a beautiful wife named Alex, 2 adorable little girls named Carys and Kismet, and their newest addition, Macsen. He was born here 2 weeks ago yesterday, had his open heart surgery last week and they are scheduled for discharge home tomorrow! Way to go Macsen. They are such a wonderful family and I feel very blessed to have met them in our short time here. Macsen will still need 2 more surgeries, like Caelen, so please add their wonderful family to your prayer list.
Thank you to all of our prayer warriors and angels.
Love,
Katye
Then we had a visit from one of our new heart friends, Aaron Miller (macsenthegrayt.blogspot.com) and he was telling us a story from earlier today about how his 6 yr old daughter accidentally got hand sanitizer in her eye. Next thing you know, Caelen is laughing!!! And he kept laughing, so we started laughing, and jumping for joy. Caelen is back!! We are all so excited I was grabbing staff from the halls :)
He's also becoming more ornery when the nurses mess with him. So again, more signs that Caelen is back :)
Thank you all for your prayers. They are working. There's still a lot of work to do with those damn effusions though, so please keep praying.
Also, I mentioned our friend Aaron earlier. He has a beautiful wife named Alex, 2 adorable little girls named Carys and Kismet, and their newest addition, Macsen. He was born here 2 weeks ago yesterday, had his open heart surgery last week and they are scheduled for discharge home tomorrow! Way to go Macsen. They are such a wonderful family and I feel very blessed to have met them in our short time here. Macsen will still need 2 more surgeries, like Caelen, so please add their wonderful family to your prayer list.
Thank you to all of our prayer warriors and angels.
Love,
Katye
Still steady
Not much has changed overnight. Which is good. Caelen's chest tubes are still draining a lot. I wish the effusions would stop.
I did get to hold him this morning and we are going to have him try for more steps this afternoon. He's talking a little more as the narcotics are weaning down. It's nice to hear his little voice but he is more agitated. So the nurse is trying to control the agitation with Tylenol round the clock and sedatives when needed. We really need to get him off the drugs safely.
His lungs are still wet, but slowly healing. As we get him up more, they should start to heal a little faster.
Other than that its just slow and steady. Thank you again for your prayers. We ask for continued healing of his heart and lungs and for the effusions to stop.
Love,
Katye
I did get to hold him this morning and we are going to have him try for more steps this afternoon. He's talking a little more as the narcotics are weaning down. It's nice to hear his little voice but he is more agitated. So the nurse is trying to control the agitation with Tylenol round the clock and sedatives when needed. We really need to get him off the drugs safely.
His lungs are still wet, but slowly healing. As we get him up more, they should start to heal a little faster.
Other than that its just slow and steady. Thank you again for your prayers. We ask for continued healing of his heart and lungs and for the effusions to stop.
Love,
Katye
Friday, October 5, 2012
Steady as he goes
Caelen is steadily showing signs of improvement. He looks a lot better today and even got out of bed and took 2 much assisted steps, and then I got to hold him for an hour :) He has been more awake and alert today and even said a few words, including, I wanna go, I wanna walk, I want juice and all done!
He still has a lot of chest tube drainage but the team still seems happy overall. I think the biggest thing is that Caelen looks and feels better. We are really hoping that his chest tube drainage will slow down shortly here so he can start making a little more progress.
Thank you to all of our family and friends who have visited in this last week and a half. And again, thank you all for your continued prayers, love and support.
Love,
Katye
He still has a lot of chest tube drainage but the team still seems happy overall. I think the biggest thing is that Caelen looks and feels better. We are really hoping that his chest tube drainage will slow down shortly here so he can start making a little more progress.
Thank you to all of our family and friends who have visited in this last week and a half. And again, thank you all for your continued prayers, love and support.
Love,
Katye
Thursday, October 4, 2012
Updates
The team just finished rounding, it's been a busy day around here, but happy to report that it wasn't up holding up the rounds this time :)
Caelen is starting to show improvement. His chest drainage is slowing, although it is still a lot. His lungs are still wet, but getting a little better. He's even going to start 5 cc of formula an hour today with the hopes of adding more. The esmolol is helping his heart to slow and fill and has been dialed back a little too.
I think overall the team is happy to see some progress finally and we're all crossing fingers that Caelen is turning the corner. Although they reminded me that this is a big corner, but still, I'll take it. Dr Spray has come by twice this morning to check on him and the staff has said it's almost unheard of for Dr Spray to come so often. Clearly he is invested in Caelen and we couldn't be happier with the care that Caelen is receiving from everyone here.
Speaking of Spray, he wants to hold off on any surgical decisions over the weekend and see if Caelen can continue this upward trend. That makes all of us happy. Caelen is still very sick, but I really do believe that he will overcome this and come back fighting. Prayers are working and prayers are healing, so please continue. Knowing how many people care for my son and care for our family is overwhelming and beautiful. Thank you for lifting Caelen up.
Love,
Katye
Caelen is starting to show improvement. His chest drainage is slowing, although it is still a lot. His lungs are still wet, but getting a little better. He's even going to start 5 cc of formula an hour today with the hopes of adding more. The esmolol is helping his heart to slow and fill and has been dialed back a little too.
I think overall the team is happy to see some progress finally and we're all crossing fingers that Caelen is turning the corner. Although they reminded me that this is a big corner, but still, I'll take it. Dr Spray has come by twice this morning to check on him and the staff has said it's almost unheard of for Dr Spray to come so often. Clearly he is invested in Caelen and we couldn't be happier with the care that Caelen is receiving from everyone here.
Speaking of Spray, he wants to hold off on any surgical decisions over the weekend and see if Caelen can continue this upward trend. That makes all of us happy. Caelen is still very sick, but I really do believe that he will overcome this and come back fighting. Prayers are working and prayers are healing, so please continue. Knowing how many people care for my son and care for our family is overwhelming and beautiful. Thank you for lifting Caelen up.
Love,
Katye
Wednesday, October 3, 2012
Fontan status
Caelen is having trouble accepting his fontan. It's almost like he is rejecting it. His heart is pumping too hard and too fast and not filling enough. He also has a lot of effusions that are dumping massive amounts of fluids from his chest. It's always better out than in, but he's so dehydrated. The docs are replacing every drop that comes out, plus more, but they can't seem to catch up. The dehydration isn't helping his heart rate.
Dr Spray is involved in every step and thinks that if we can't control the systems, then he wants to take Caelen back to the OR and take down the fontan and restore him to a Glenn, either tomorrow or Friday.
Please pray for his heart to accept the fontan and slow down and fill to a normal rate, the effusions to stop, his lungs to heal and for Caelen to heal and recover fully so he can come home. Thank you all for the prayers and messages. Although I can't respond to all of them, I am reading them.
Dr Spray is involved in every step and thinks that if we can't control the systems, then he wants to take Caelen back to the OR and take down the fontan and restore him to a Glenn, either tomorrow or Friday.
Please pray for his heart to accept the fontan and slow down and fill to a normal rate, the effusions to stop, his lungs to heal and for Caelen to heal and recover fully so he can come home. Thank you all for the prayers and messages. Although I can't respond to all of them, I am reading them.
Monday, October 1, 2012
Withdrawal
Caelen sent me over the edge tonight. Thought I was gonna have a heart attack. Around 4:00 his heart rate started shooting up to the 160's, then 180's, then 200's!!! X-ray, EKG and echo were good, thank God. It was withdrawal with dehydration. But it took almost 5 hours to figure that out. The team gave fluids and added back the meds and he settled out. He also has a fever. So they added a 2nd antibiotic since he still has the UTI and that med isn't covering the fever.
When the docs couldn't figure things out, they were worried about seizures. So thank God they pretty much ruled that out.
Gotta say, it crushed my heart to see him so miserable tonight. I just don't have the reserves right now to handle another "event."
So tonight I ask that you pray for Caelens team to figure out his withdrawal and wean plan. For his heart rate, pressure and fluids to stabilize, and as always, for his lungs to heal. There is still a possibility of extubating tomorrow.
Love,
Katye
When the docs couldn't figure things out, they were worried about seizures. So thank God they pretty much ruled that out.
Gotta say, it crushed my heart to see him so miserable tonight. I just don't have the reserves right now to handle another "event."
So tonight I ask that you pray for Caelens team to figure out his withdrawal and wean plan. For his heart rate, pressure and fluids to stabilize, and as always, for his lungs to heal. There is still a possibility of extubating tomorrow.
Love,
Katye
Bye Bye ECMO
We just met with Dr Spray and he said that Caelen did great coming off ECMO. He did not have to close the fenestration either. He wants to wean the diuretics and start waking Caelen today, and he'd even like to extubate to oxygen tomorrow! He said Caelen needs to start getting up abd walking around once he is extubated. Dr Spray was very hopeful that Caelen will be just fine.
Time to take a breath.
Caelen's lungs are still crappy though, so we need to work on them and continue to dry them out. Thank you to all for the prayers, please keep working your miracles. I cannot thank each and every one of you enough. From the bottom of my heart, THANK YOU!
Time to take a breath.
Caelen's lungs are still crappy though, so we need to work on them and continue to dry them out. Thank you to all for the prayers, please keep working your miracles. I cannot thank each and every one of you enough. From the bottom of my heart, THANK YOU!
Back in the OR
Caelen is in the OR now and Dr Spray is taking him off ECMO. He may need to close the fenestration if Caelen's sats aren't high enough. Should be about another hour and a half. As soon as I am able to, I'll update.
Please pray that Caelen successfully comes off ECMO and his lungs heal. Please also pray that the team gets more access for IV's.
Please pray that Caelen successfully comes off ECMO and his lungs heal. Please also pray that the team gets more access for IV's.
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