I realized its been almost 2 weeks since the cath and I haven't updated anything. There still isn't any word from the transplant team as to whether or not Caelen will be a candidate when the time comes for transplant. Half the team was at a conference last week, so the first time that Caelen would've been presented was this week, and that was if there weren't emergent cases in front of us. To be quite honest, I'm not pushing anybody for an answer. I want to live in my bubble and pretend that we can continue on our own path for a few more years.
Caelen has had an increase in casts since we got home from the hospital, it got to the point that they were almost daily. But he was clearing them and the team wasn't too concerned. What they said was, this is your new life. You have all the tools now to manage this from home, and we have 10 other kids at home doing the same thing. As long as he can clear them, go on with your plans. It made me stop and reassess things. They were right, why am I letting this keep us in a holding pattern? It's time to make the most of our time and let Caelen enjoy being home, while still keeping and eagle eye out for germs ;)
So I made a few changes this week in my attempts to combat the PB and here's where I attacked:
Allergies
Food
Martin changed all the allergy filters and I turned off the gas fireplace. I've also restarted Caelen's Flonase. Next, I stopped making fresh juices out of veggies and fruits and putting it in his g-tube. We know that lymphatic fluid leaking into his airways is what's causing the PB. So maybe he couldn't handle all of the fresh foods I was putting into him?
I don't want to jinx us, but, Caelen has been cast free since the changes. The team says that food and allergies aren't causes of PB, but clearly, something is working. So, again, I don't want to jinx things, but I'm praying that this works.
Aside from all of this, Caelen is doing well. He is starting the terrible 3's, spending many times a day in time out, and still not making headway on potty training. But, he's hilarious and adorable and so lovable that its hard not to laugh. He sings songs and tells me which music to play and which way to go in the car. He wants to sit in my lap and snuggle and read books and give me hugs. What's not to love?!
So the transplant team's decision can wait, cause right now, things are good and I have my little miracle boy at home and he's non stop love and trouble, just the way a little boy should be :)
Love,
Katye
Friday, March 22, 2013
Monday, March 11, 2013
Home tomorrow ?
Maybe. Dr Rychik came by tonight and said he was overall pleased with the cath results and that a lot of valuable information, especially pressures was gained. This will help in the transplant eval. Caelen hasn't had a cast in a week now, so maybe the meds are finally kicking in and lowering his PA pressures.
His nebs have been decreased to 4 times per day from 6, and if he can maintain this, then we can go home and stay home.
As far as transplant goes, if need be, Caelen can list, and if he gets better, he can come off the list. But we hope that we are going away from transplant for the time being.
So, hopefully outta here tomorrow and home for a while. I'll post tomorrow confirming the plans :)
His nebs have been decreased to 4 times per day from 6, and if he can maintain this, then we can go home and stay home.
As far as transplant goes, if need be, Caelen can list, and if he gets better, he can come off the list. But we hope that we are going away from transplant for the time being.
So, hopefully outta here tomorrow and home for a while. I'll post tomorrow confirming the plans :)
Friday, March 8, 2013
Cath is over
We spoke to Dr Rome and Caelen is fine. He was able to gain valuable information as far as pressures go, which were actually low (good), but there wasn't anything to fix. It's kind of complicated, but we already know that Caelen's pulmonary arteries have occlusions and blockages, preventing adequate and direct blood flow to the lungs. This also being the reason that Dr Rome can't get into the PA's to get pressures and find out exactly how much (or little) blood flow is going to the lungs. So instead, Caelen has a lot of little collateral arteries delivering oxygenated blood to his lungs. The collaterals shoot off his pulmonary arteries and go to the lungs, and they are small. This is how the body rewires and fixes itself.
Dr Rome felt that Caelen's lungs were fine (innocent bystanders) he called them, and in his unofficial opinion, a heart and lung transplant isn't required. That being said, he isn't sure that a heart transplant will fix the plastic bronchitis either. Caelen's heart is fine for now, it's all the "plumbing" around it that is causing problems: blocked and occluded arteries and veins. The plumbing is the real problem because there isn't really a fix for that.
As for the plastic bronchitis, there isn't anything to intervene on. Dr Rome feels like the lymphatic system is just messed up, and it's leaking into the airway.
So we still have to wait for the transplant team to officially meet and discuss Caelen's case in detail.
For now we will just wait and see what the team thinks the next step in his ongoing treatment will be.
Thank you for all of your prayers, please keep them up for Caelen. He looks good and is resting comfortably in recovery.
Love,
Katye
Dr Rome felt that Caelen's lungs were fine (innocent bystanders) he called them, and in his unofficial opinion, a heart and lung transplant isn't required. That being said, he isn't sure that a heart transplant will fix the plastic bronchitis either. Caelen's heart is fine for now, it's all the "plumbing" around it that is causing problems: blocked and occluded arteries and veins. The plumbing is the real problem because there isn't really a fix for that.
As for the plastic bronchitis, there isn't anything to intervene on. Dr Rome feels like the lymphatic system is just messed up, and it's leaking into the airway.
So we still have to wait for the transplant team to officially meet and discuss Caelen's case in detail.
For now we will just wait and see what the team thinks the next step in his ongoing treatment will be.
Thank you for all of your prayers, please keep them up for Caelen. He looks good and is resting comfortably in recovery.
Love,
Katye
Cath update 2
Dr Rome got femoral access, yay! He is just now starting to take pictures, so next update at 5.
Cath update
The bronch was clear of casts, but he did have a lot of secretions, so those were suctioned out. Dr Rome has been trying to get access in Caelen's groin, but hasn't been able to thread the wires all the way through yet. If he can't get in through the groin, he'll go thru his liver again.
Next update at 4.
Next update at 4.
Thursday, March 7, 2013
Cath tomorrow
Just got word that Caelen is third case tomorrow for cath, and he's getting the bronchoscopy too. Dr Goldfarb, who is the pulmonary guru, will do the bronch, and Dr Rome who is one of the nation's leading cath Drs, will once again do the cath.
As a fun side note, Caelen picked up another GI bug and we are now on contact isolation. Oh joy. Thank goodness for iPads and DVDs. In spite of it all, Caelen is still in a good mood. As long as there is no fever, it won't stop us from going to cath lab.
And I need to say thank you to so many people who are helping us out behind the scenes, and on the front line. Jen B, Ellen Z, Elizabeth, Susan and Shannon, Ana, our families and so many more. Thanks for lifting us up and giving us a boost through everything. And to all that have sent messages, I have read everyone, sorry that I haven't been able to respond.
Thank you for your continued prayers. Here's some of Caelen's photos from tonight.
Love,
Katye
As a fun side note, Caelen picked up another GI bug and we are now on contact isolation. Oh joy. Thank goodness for iPads and DVDs. In spite of it all, Caelen is still in a good mood. As long as there is no fever, it won't stop us from going to cath lab.
And I need to say thank you to so many people who are helping us out behind the scenes, and on the front line. Jen B, Ellen Z, Elizabeth, Susan and Shannon, Ana, our families and so many more. Thanks for lifting us up and giving us a boost through everything. And to all that have sent messages, I have read everyone, sorry that I haven't been able to respond.
Thank you for your continued prayers. Here's some of Caelen's photos from tonight.
Love,
Katye
Wednesday, March 6, 2013
PB update
Caelen is doing well, he's playing and running amuck around the halls of the hospital. He's been in a great mood and is very funny, especially when he streaks at bath time. He keeps escaping from me by ripping off his oxygen and taking off down the halls, closing other patients doors so he can see his reflection. Clearly he's not bothered too much by being here in the hospital.
I think the nebulizer treatments he's getting around the clock are helping. As it sits, the tentative plan is to go to cath lab on Friday if they can squeeze us in. It hasn't been confirmed with scheduling yet, but that's the talk amongst the team. We are hoping to do a bronchoscopy first to see if there are any casts in his lungs and if so, clear them. The cath is part of the transplant evaluation, so Dr Rome will be trying to get pulmonary pressures, which they haven't gotten in a long time, because they don't have access, and measuring the pressures inside his heart. But we also hope that Dr Rome finds something fixable, something leaking or narrowed or something that is causing the PB that can be fixed. I hate to say it, but I want there to be an easily fixable problem with Caelen.
Once the results from the cath go to the transplant team, they will review at surgical conference next Tuesday, and we may have an answer as to candidacy next week, and whether Caelen needs just heart, or heart and lungs. I pray that it is not heart and lungs, because the longevity is very short, and the success rate low.
It's incredibly hard to look at my beautiful boy and see how full of life he is, and how active and spunky and brilliant he is, and know that he is critically ill. I guess I just keep readjusting my baseline for him, but I haven't wanted to see what so many others do, that Caelen is sick. It doesn't phase me that he is on 20 meds a day and continuous oxygen, and breathing treatments round the clock. I see a perfect little boy, a perfect soul that has touched so many people, and reunited many. A beaming life force that isn't ready to dim. I see an angel that has no clue that he has anything wrong with him. I'm not ready to give up, and I believe that we can get the PB under control. I have to. Because the alternative isn't good. Transplant for Caelen will be very risky we've been warned. But I have to have hope. Maybe I'm naive, but my gut, my intuition tells me that Caelen's got more time. That he has a bigger future. Maybe that's just the mom in me that doesn't want to give up on my son. But that's what I'm going to hold on to, the Love and Faith I have in Caelen and in God.
Alright, no more crying and blogging for me tonight. I'm going to enjoy my little sleeping miracle and look forward to his shenanigans tomorrow. My beautiful, funny little boy.
Love,
Katye
I think the nebulizer treatments he's getting around the clock are helping. As it sits, the tentative plan is to go to cath lab on Friday if they can squeeze us in. It hasn't been confirmed with scheduling yet, but that's the talk amongst the team. We are hoping to do a bronchoscopy first to see if there are any casts in his lungs and if so, clear them. The cath is part of the transplant evaluation, so Dr Rome will be trying to get pulmonary pressures, which they haven't gotten in a long time, because they don't have access, and measuring the pressures inside his heart. But we also hope that Dr Rome finds something fixable, something leaking or narrowed or something that is causing the PB that can be fixed. I hate to say it, but I want there to be an easily fixable problem with Caelen.
Once the results from the cath go to the transplant team, they will review at surgical conference next Tuesday, and we may have an answer as to candidacy next week, and whether Caelen needs just heart, or heart and lungs. I pray that it is not heart and lungs, because the longevity is very short, and the success rate low.
It's incredibly hard to look at my beautiful boy and see how full of life he is, and how active and spunky and brilliant he is, and know that he is critically ill. I guess I just keep readjusting my baseline for him, but I haven't wanted to see what so many others do, that Caelen is sick. It doesn't phase me that he is on 20 meds a day and continuous oxygen, and breathing treatments round the clock. I see a perfect little boy, a perfect soul that has touched so many people, and reunited many. A beaming life force that isn't ready to dim. I see an angel that has no clue that he has anything wrong with him. I'm not ready to give up, and I believe that we can get the PB under control. I have to. Because the alternative isn't good. Transplant for Caelen will be very risky we've been warned. But I have to have hope. Maybe I'm naive, but my gut, my intuition tells me that Caelen's got more time. That he has a bigger future. Maybe that's just the mom in me that doesn't want to give up on my son. But that's what I'm going to hold on to, the Love and Faith I have in Caelen and in God.
Alright, no more crying and blogging for me tonight. I'm going to enjoy my little sleeping miracle and look forward to his shenanigans tomorrow. My beautiful, funny little boy.
Love,
Katye
Saturday, March 2, 2013
Crying and blogging
I just re read my last post and geeze, there were a lot of typos and mistakes. Perhaps I shouldn't try and blog through tears anymore.
Sometimes I use this blog to vent, and clearly yesterday was one of those days. Thank you for the kind and supportive messages.
Caelen had a good night. I think that he coughed up and then swallowed the cast yesterday during the IV. His breathing is a bit more comfortable and his sats are a bit better too. We have weaned his oxygen back to 2 liters from 3 and we'll see how he does today. But so far so good. He's in a great mood and has been walking/escaping down the halls without oxygen of course, and staring at himself in every reflective surface he can find. He's also been serenading the nurses with country music.
In rounds it was decided to do nothing except wait for the heart transplant team to come and consult with us. That won't be until Monday. Depending on their assessment of Caelen, they may want a cath, ugh. And they will need a lot of blood for labs. So we just wait and see.
In the meantime, one of his diuretics was added back to see if that helps with the casts. The diuril was weaned off during his last clinic visit almost 3 weeks ago, kind of around the time the casts increase. So that's one theory we're working with.
Because my brain is so frazzled, I can't remember if I mentioned why heart transplant team has been consulted. There is no cure for plastic bronchitis. If it cant be managed, and continues to get worse, it is deadly as it literally obstructs his airway. The danger being that if one gets stuck, and he can't clear it, he will choke. Think of it has choking from the inside out. So, when PB gets to the point that it worsens and doesn't respond to treatment, then a heart transplant becomes the only option. In most cases, the PB stops, but it can continue in some cases for a time.
What causes PB? High PVR's (pulmonary pressures) from the heart defect and successive surgeries. So the theory being that by getting a heathy heart, it eases the pressures on the rest of his system, including his kidneys and liver, where pressures are known to back to up. Specifically the liver.
For my medical friends, feel free to comment with corrections, but I think I'm getting the basics covered.
So that's where we're at. We are trying to get the PB under control for a while, but eventually, he will need a new heart. We just want to try and get a few more years before we go the transplant route. Once I meet with transplant on Monday I'll have a better idea of the process.
Please continue to keep Caelen in your prayers. If there is one thing I could ask God for, it would be for the plastic bronchitis to stop.
Love,
Katye
Sometimes I use this blog to vent, and clearly yesterday was one of those days. Thank you for the kind and supportive messages.
Caelen had a good night. I think that he coughed up and then swallowed the cast yesterday during the IV. His breathing is a bit more comfortable and his sats are a bit better too. We have weaned his oxygen back to 2 liters from 3 and we'll see how he does today. But so far so good. He's in a great mood and has been walking/escaping down the halls without oxygen of course, and staring at himself in every reflective surface he can find. He's also been serenading the nurses with country music.
In rounds it was decided to do nothing except wait for the heart transplant team to come and consult with us. That won't be until Monday. Depending on their assessment of Caelen, they may want a cath, ugh. And they will need a lot of blood for labs. So we just wait and see.
In the meantime, one of his diuretics was added back to see if that helps with the casts. The diuril was weaned off during his last clinic visit almost 3 weeks ago, kind of around the time the casts increase. So that's one theory we're working with.
Because my brain is so frazzled, I can't remember if I mentioned why heart transplant team has been consulted. There is no cure for plastic bronchitis. If it cant be managed, and continues to get worse, it is deadly as it literally obstructs his airway. The danger being that if one gets stuck, and he can't clear it, he will choke. Think of it has choking from the inside out. So, when PB gets to the point that it worsens and doesn't respond to treatment, then a heart transplant becomes the only option. In most cases, the PB stops, but it can continue in some cases for a time.
What causes PB? High PVR's (pulmonary pressures) from the heart defect and successive surgeries. So the theory being that by getting a heathy heart, it eases the pressures on the rest of his system, including his kidneys and liver, where pressures are known to back to up. Specifically the liver.
For my medical friends, feel free to comment with corrections, but I think I'm getting the basics covered.
So that's where we're at. We are trying to get the PB under control for a while, but eventually, he will need a new heart. We just want to try and get a few more years before we go the transplant route. Once I meet with transplant on Monday I'll have a better idea of the process.
Please continue to keep Caelen in your prayers. If there is one thing I could ask God for, it would be for the plastic bronchitis to stop.
Love,
Katye
Friday, March 1, 2013
Plastic bronchitis update
So we sat in our local ER for 7 hours yesterday waiting on the helicopter. But we did run into friends as we were leaving at midnight. Not the best place for a reunion, but good to see them anyway.
We arrived at 1:30 in the morning and finally got to sleep at 3:30. Long night. Caelen had an echo today, blood draw and 2 attempts at placing an IV. The most recent ending an hour ago. Let me tell you I fought the second IV placement because it isn't not going to be used right now and is only a backup plan. And I understand that. But knowing its a weekend and no procedures would be scheduled till Monday, if any, I didn't want to waste the vein since he blows them quickly. I basically felt bullied into it because I asked to speak with my dr first. The attending said ok, but then ordered the IV anyway. They came to us the playroom and said that the team was here for us and ready to go, and our nurse already has Valium for Caelen. And I still hasn't talked to our Dr. So I felt bullied. And I told my Dr this. He said it was necessary, but he came after the fact.
This sent me into big tears. Embarrassingly sobbing tears. I hate showing weakness and today I broke down. We will continue the nebs every 4 hours, tweak some meds,but If we can't get this under control, then transplant is on the table. I am meeting with the transplant team on Monday to discuss the next steps.
There's still a possibly that we can get the plastic bronchitis under control, but transplant is likely. When will he get a break?
But, Caelen is having a good day. He'a cruising, watching movies, going on wagon rides, and flirting up a storm.
So I guess for now, here's what's happening. A lot of people come thru the room. Everyone with a different Pon.
Ok,my eyes look Horace from crying. I'm going to take a nap.
Thank you
Katye
We arrived at 1:30 in the morning and finally got to sleep at 3:30. Long night. Caelen had an echo today, blood draw and 2 attempts at placing an IV. The most recent ending an hour ago. Let me tell you I fought the second IV placement because it isn't not going to be used right now and is only a backup plan. And I understand that. But knowing its a weekend and no procedures would be scheduled till Monday, if any, I didn't want to waste the vein since he blows them quickly. I basically felt bullied into it because I asked to speak with my dr first. The attending said ok, but then ordered the IV anyway. They came to us the playroom and said that the team was here for us and ready to go, and our nurse already has Valium for Caelen. And I still hasn't talked to our Dr. So I felt bullied. And I told my Dr this. He said it was necessary, but he came after the fact.
This sent me into big tears. Embarrassingly sobbing tears. I hate showing weakness and today I broke down. We will continue the nebs every 4 hours, tweak some meds,but If we can't get this under control, then transplant is on the table. I am meeting with the transplant team on Monday to discuss the next steps.
There's still a possibly that we can get the plastic bronchitis under control, but transplant is likely. When will he get a break?
But, Caelen is having a good day. He'a cruising, watching movies, going on wagon rides, and flirting up a storm.
So I guess for now, here's what's happening. A lot of people come thru the room. Everyone with a different Pon.
Ok,my eyes look Horace from crying. I'm going to take a nap.
Thank you
Katye
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