Dr Rome just came and spoke with us. The leak clotted on its own and the stent wasn't necessary. The downside is that he just isn't getting enough oxygenated blood to his lungs.
Unfortunately, there's nothing else he can do to make Caelen pinker or bring his sats up. He'll have to stay on the oxygen. Fortunately, it wont be 24 hours a day that he needs it, but its back to lugging tanks around again. I'm ok with this though. Caelen is alive and happy and that's what is most important. We've done this before and we'll do it again. Now I just need to figure out what we need to do go home.
Please keep Caelen in your prayers. And Thank You to all who pray for him.
Love,
Katye
Friday, November 30, 2012
Cath update 2
Just got an update, Dr Rome did not place the covered stent, we don't know why yet. He is finishing up and will be out to talk to us in an hour.
Cath update
The RN said that Caelen is doing well. They just finished prepping and are now starting the procedure. It will take a few hours. Next update around 2:00.
He just went back
Anesthesia just took Caelen back to cath lab. First update will be at 1:00 and then hourly afterwards.
Waiting in the CPRU
They brought us next door to the CPRU about a half hour ago, and we are waiting on anesthesia to take us back to cath. We are second case so I don't have an exact time, but soon.
Please say extra prayers today that all goes well.
Thank you!!
Katye
Please say extra prayers today that all goes well.
Thank you!!
Katye
Wednesday, November 28, 2012
Finally, a Cath date
Dr Rome came in tonight and said that we got FDA approval for the covered stent. So it looks like it will be Friday.
Now on to the fun stuff...we met Carrie Underwood today!!!! How cool is that?!? She is so pretty, and so tiny. We couldn't get a picture posing with her, but we did get an autographed photo for Caelen, and our friend Katie got a photo of us meeting her. What a nice thing of her to do before her concert here in Philly tonight.
Here's the pics of Carrie. Have a great nite everyone :)
Oh yeah, Caelen is doing great, lol. He's talking up a storm and has given up the nap in favor of stirring up trouble in the halls.
Now on to the fun stuff...we met Carrie Underwood today!!!! How cool is that?!? She is so pretty, and so tiny. We couldn't get a picture posing with her, but we did get an autographed photo for Caelen, and our friend Katie got a photo of us meeting her. What a nice thing of her to do before her concert here in Philly tonight.
Here's the pics of Carrie. Have a great nite everyone :)
Oh yeah, Caelen is doing great, lol. He's talking up a storm and has given up the nap in favor of stirring up trouble in the halls.
Thursday, November 22, 2012
Happy Thanksgiving
Wishing everyone a very Happy Thanksgiving! We had a little fun here in the halls this morning and had our own Thanksgiving Day Parade. Caelen only smiled when the camera was down, but at least you get the idea.
We are most thankful for The Gift of Caelen's Life. Thank you to all who pray for us, your prayers have clearly worked.
We were granted another Miracle with Caelen and are ever mindful of our blessings.
Wishing everyone a safe and healthy holiday.
Love,
Katye
We are most thankful for The Gift of Caelen's Life. Thank you to all who pray for us, your prayers have clearly worked.
We were granted another Miracle with Caelen and are ever mindful of our blessings.
Wishing everyone a safe and healthy holiday.
Love,
Katye
Tuesday, November 20, 2012
Still waiting
No news on the cath. We saw Dr Rome in the halls tonight and he said he hopes to have approval to proceed on Monday. I'm not holding my breath, but he did feel positive about the cath happening next week. So we'll see.
It's literally status quo around here. No one really bothers us too much and we just spend the day doing therapies and walking the halls or cruising in the wagon. As soon as we know more we'll update.
We are working on a Thanksgiving photo and hopefully it'll turn out cute. Till Thursday....
It's literally status quo around here. No one really bothers us too much and we just spend the day doing therapies and walking the halls or cruising in the wagon. As soon as we know more we'll update.
We are working on a Thanksgiving photo and hopefully it'll turn out cute. Till Thursday....
Thursday, November 15, 2012
Waiting around
The earliest the cath will happen now is next Wednesady, and if the paperwork isn't ready, then it'll be the week after. Kinda stinks that we're just sitting here in the hospital waiting around, but on the flip side, Caelen is doing well.
I attended the birthday party of a young man named Duwayne today, he turned 10 and got his heart transplant 6 weeks ago. A lot of the regular cast of characters were there to celebrate with him, and as I looked around the room, I thought to myself, how lucky am I to witness so many miracles?! All of these kids that society calls "sick" were there celebrating and eating ice cream cake. Some on oxygen, some on vents, some on dialysis, some on feeding tubes, some in wheelchairs, but all were smiling. So it's little celebrations like this that make waiting around easier. The longer we are here, the more people we meet, and the bigger my heart gets. Whatever is in store for Caelen's future, I know we can get through it.
I always like to thank people for their care packages, so today I am saying a big thank you to the Rhoads' clan, they are fellow heart friends. Thanks for the Gabba pillowcase, Caelen loves it!! And thank you to the anonymous friend that sent the balloons for Caelen and chocolate for me. I wish I knew who sent them, there was no card with the bag. Please chime in and let me know if it was you :)
And thanks to all of you for keeping us in your prayers. I am eternally grateful for all of you.
Love,
Katye
I attended the birthday party of a young man named Duwayne today, he turned 10 and got his heart transplant 6 weeks ago. A lot of the regular cast of characters were there to celebrate with him, and as I looked around the room, I thought to myself, how lucky am I to witness so many miracles?! All of these kids that society calls "sick" were there celebrating and eating ice cream cake. Some on oxygen, some on vents, some on dialysis, some on feeding tubes, some in wheelchairs, but all were smiling. So it's little celebrations like this that make waiting around easier. The longer we are here, the more people we meet, and the bigger my heart gets. Whatever is in store for Caelen's future, I know we can get through it.
I always like to thank people for their care packages, so today I am saying a big thank you to the Rhoads' clan, they are fellow heart friends. Thanks for the Gabba pillowcase, Caelen loves it!! And thank you to the anonymous friend that sent the balloons for Caelen and chocolate for me. I wish I knew who sent them, there was no card with the bag. Please chime in and let me know if it was you :)
And thanks to all of you for keeping us in your prayers. I am eternally grateful for all of you.
Love,
Katye
Sunday, November 11, 2012
Cath anyone?
Caelen is doing well in the step down unit, but his oxygen requirements during the day are still unchanged. He's only on 1 liter of o2, but he's only sitting in the low 70's. When he sleeps he's in the upper 70's, which for him is fine. But he is on the bluer side.
Dr Rome has an idea and we'll be going back to the cath lab sometime this week to stop the blue blood leaking from the Fontan take down. The idea being that once the leak stops, Caelen will get more oxygenated blood and his sats will improve.
It's called a covered stent and it's not approved here in the US. It is in every other civilized nation, but the FDA hasn't given it the ok yet. It can only get approval though a compassionate care basis, and this is how Dr Rome will get it approved for us. The compassionate care being the cath lab as opposed to cracking Caelen's sternum again and completely taking down the Fontan. Because Caelen has had such a rough go of it, surgery is definitely not compassionate.
There is a ton of paperwork involved for Dr's Rome and Spray, but nothing for me to have to do, well except to pray. Fortunately Dr Rome has used this device before, just not in Caelen's circumstances. So once again, Caelen makes case study. I think he needs a medical journal written about him. He's racking up too many case studies to count.
But all in all, Caelen is doing very well. He's happy as long as no one touches him or messes with him, and he's talking more and more every day. He's using a lot more words than he did before the surgery, and I'm so beyond grateful that he doesn't have any neurological deficits. To come through every thing that Caelen has, and to maintain his beautiful personality makes me realize that once again, we have been granted a miracle. I know I prayed HARD for a miracle, as did many of you, and I just want to say THANK YOU!
I ask that you still keep Caelen in your prayers, as well as the many children here in the hospital. In particular, our friend George and another friend Khloe. All of these heart kids are miracles, and I get to witness it every day.
Love,
Katye
Dr Rome has an idea and we'll be going back to the cath lab sometime this week to stop the blue blood leaking from the Fontan take down. The idea being that once the leak stops, Caelen will get more oxygenated blood and his sats will improve.
It's called a covered stent and it's not approved here in the US. It is in every other civilized nation, but the FDA hasn't given it the ok yet. It can only get approval though a compassionate care basis, and this is how Dr Rome will get it approved for us. The compassionate care being the cath lab as opposed to cracking Caelen's sternum again and completely taking down the Fontan. Because Caelen has had such a rough go of it, surgery is definitely not compassionate.
There is a ton of paperwork involved for Dr's Rome and Spray, but nothing for me to have to do, well except to pray. Fortunately Dr Rome has used this device before, just not in Caelen's circumstances. So once again, Caelen makes case study. I think he needs a medical journal written about him. He's racking up too many case studies to count.
But all in all, Caelen is doing very well. He's happy as long as no one touches him or messes with him, and he's talking more and more every day. He's using a lot more words than he did before the surgery, and I'm so beyond grateful that he doesn't have any neurological deficits. To come through every thing that Caelen has, and to maintain his beautiful personality makes me realize that once again, we have been granted a miracle. I know I prayed HARD for a miracle, as did many of you, and I just want to say THANK YOU!
I ask that you still keep Caelen in your prayers, as well as the many children here in the hospital. In particular, our friend George and another friend Khloe. All of these heart kids are miracles, and I get to witness it every day.
Love,
Katye
Thursday, November 8, 2012
CCU Step down
We made it!!! Caelen made it to the step down unit (CCU) on Tuesday. What a great feeling! He's doing really well overall and plans are being made for eventual discharge home. When that will be I'm not sure. Could be as short as 2 weeks. Could be longer.
Caelen does require more oxygen support during the day now while he's awake, bur not so much while he sleeps. There's a couple of theories on that but no answers yet. In all likelihood he'll come home on some sort of oxygen support, but we don't know if it will be full time, day time or just occasional. That's why we're being watched here in the CCU, to see where his oxygen sats will end up and whether he needs to go back to cath lab now or at a much later date. As in, go home, get the heck outta here and come back for cath in a year. That's everyone's preference.
Tonight Caelen had his first bath in the tub with water since September 23. He was hesitant until he saw the water and then it was game on. Hopefully the pictures will load.
Now we're sitting together in his bed watching Gabba. He keeps telling me, "no sing mommy." Smart ass. This is all we watch and I know every song, but he won't let me sing along. When did my 3 year old become 13?!?
I think that's it for now. We keep pretty busy during the day and stay out of the room as much as possible. Thanks again for all of the love, care packages, support and prayers.
Love,
Katye
Caelen does require more oxygen support during the day now while he's awake, bur not so much while he sleeps. There's a couple of theories on that but no answers yet. In all likelihood he'll come home on some sort of oxygen support, but we don't know if it will be full time, day time or just occasional. That's why we're being watched here in the CCU, to see where his oxygen sats will end up and whether he needs to go back to cath lab now or at a much later date. As in, go home, get the heck outta here and come back for cath in a year. That's everyone's preference.
Tonight Caelen had his first bath in the tub with water since September 23. He was hesitant until he saw the water and then it was game on. Hopefully the pictures will load.
Now we're sitting together in his bed watching Gabba. He keeps telling me, "no sing mommy." Smart ass. This is all we watch and I know every song, but he won't let me sing along. When did my 3 year old become 13?!?
I think that's it for now. We keep pretty busy during the day and stay out of the room as much as possible. Thanks again for all of the love, care packages, support and prayers.
Love,
Katye
Monday, November 5, 2012
Talking, not sleeping
Caelen is so silly sometimes. The poor child is exhausted!! Yet he's laying in bed, in the dark, talking to himself. We're all sitting here trying not to laugh.
Martin gave him quite the workout today. They had a daddy/son bonding day, and I'm not sure who's more tired. There was a lot of walking and wagon rides and Caelen looks great! His sats are a little off, which is weird, but he looks good, and is acting appropriately so I'm not too concerned.
No big changes, he's being weaned down on the milrinone, which helps slow his heart a bit so it relaxes and has time to fully fill. This is an IV med, so it'll be great when it's gone in a few days. At the same time he's being given enalapril thru his g-tube, which does the same thing and he will be on at home.
He's had X-ray and lab holidays, so not much to report on those fronts, but all in all, he's doing well. Martin asked for a report from Dr's Spray and Rome tomorrow to see where their heads are regarding Caelen's progress and status. Once I know more, I'll post.
A big thank you to Aunt Momo for organizing and awesome care package that arrived today. There were so many wonderful people who sent sweet messages, thank you all for your loving words. Sounds like a Florida vacation may be in order to thank the fan club.
Thank you all again for your prayers, please keep praying so we can get out of here.
Love,
Katye
Martin gave him quite the workout today. They had a daddy/son bonding day, and I'm not sure who's more tired. There was a lot of walking and wagon rides and Caelen looks great! His sats are a little off, which is weird, but he looks good, and is acting appropriately so I'm not too concerned.
No big changes, he's being weaned down on the milrinone, which helps slow his heart a bit so it relaxes and has time to fully fill. This is an IV med, so it'll be great when it's gone in a few days. At the same time he's being given enalapril thru his g-tube, which does the same thing and he will be on at home.
He's had X-ray and lab holidays, so not much to report on those fronts, but all in all, he's doing well. Martin asked for a report from Dr's Spray and Rome tomorrow to see where their heads are regarding Caelen's progress and status. Once I know more, I'll post.
A big thank you to Aunt Momo for organizing and awesome care package that arrived today. There were so many wonderful people who sent sweet messages, thank you all for your loving words. Sounds like a Florida vacation may be in order to thank the fan club.
Thank you all again for your prayers, please keep praying so we can get out of here.
Love,
Katye
Friday, November 2, 2012
2 good days
Dare I say that we've had 2 really good days in a row? Both of his chest tubes are gone and his X-ray today looks awesome, well, for Caelen it's awesome. He got the art line in his foot out yesterday and we've tried walking again with pt. Lots and lots of wagon rides are our daily exercise and they're made so much easier without oxygen. Yep, Caelen took off the oxygen today around 1:00 and he's been doing great ever since!!
So I'm scared of jinxing things, but hey, they're looking up. We even saw Dr Rome in the hall today and he gave us a thumbs up! Does this mean we've avoided cath lab? Not sure, but no one is rushing to do anything to Caelen right now. And I'm thrilled!!
His milrinone is being weaned and that's the last of the IV meds. He has reached goal on his feeds, so we are going to try for bolus, or condensed feeds soon. Right now he gets 55 cc per hour for 22 hours a day. The goal is to get back to our home schedule of 4 bolus feeds per day. But that goal won't keep us here.
What is keeping us here? Caelens heart and lungs, but he's getting better every day. So we just keep plugging along and getting out of the room as much as possible.
Lastly, our friend Jaclyn is doing better and her anti seizure meds needed an adjustment. She was home around lunch time and even got to go trick or treating. Thank you all for your constant prayers.
Love,
Katye
So I'm scared of jinxing things, but hey, they're looking up. We even saw Dr Rome in the hall today and he gave us a thumbs up! Does this mean we've avoided cath lab? Not sure, but no one is rushing to do anything to Caelen right now. And I'm thrilled!!
His milrinone is being weaned and that's the last of the IV meds. He has reached goal on his feeds, so we are going to try for bolus, or condensed feeds soon. Right now he gets 55 cc per hour for 22 hours a day. The goal is to get back to our home schedule of 4 bolus feeds per day. But that goal won't keep us here.
What is keeping us here? Caelens heart and lungs, but he's getting better every day. So we just keep plugging along and getting out of the room as much as possible.
Lastly, our friend Jaclyn is doing better and her anti seizure meds needed an adjustment. She was home around lunch time and even got to go trick or treating. Thank you all for your constant prayers.
Love,
Katye
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