Saturday they were prepping Rowan for extubation Sunday morning. Sunday morning I walked in and of course the first words out of the nurse's mouth were "we're not extubating today". Looking at Rowan, I was really comfortable with that decision. He was breathing about 60 times a minute (try it and see if you think that's comfy) even when he was sleeping. The day before he'd been in the 30s and 40s, which is normal for an infant. He looked like he was working much harder.
Also, his blood pressure had been creeping up and up and up.
So we let him rest with a little more help from the vent. 3 days of breathing with the smallest amount of support you can get while intubated is a huge success for Rowan. He's doing much better with breathing today, but his blood pressure is still on the rise.
The doctors checked out his heart and belly just to make sure there wasn't something wrong, but nothing so far! We think he might just be too awake.
Right now, Rowan has two IV lines (one in his arm, one in his leg), a tube down each nostril, a pigtail line to drain chest fluid, and an intubation tube. NONE of these are comfortable. The goal is keep Rowan awake enough to move and groan and use muscles and get stronger, but sedate enough that he isn't in so much pain that he needs extra medicine a lot. This is really difficult to balance. Today the doctors are seeing if the sedation meds need adjusting. They are giving him morphine regularly to see if that helps.
For now, we're just waiting, giving Rowan time to strengthen his breathing muscles and dry up that chest tube fluid (which is still rapidly going down) while we figure out what is up with the blood pressure.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
Monday, January 30, 2012
Saturday, January 28, 2012
Sweetheart Run
If you are a runner in the Tulsa area, I'd like to request that you consider participating in the Sweetheart Run on February 11th. This run raises money for CHAMP Camp. This is a summer camp for children with Congenital Heart Disease where they can do what normal kids do at summer camp - but the camp is staffed by trained medical professionals so that if a child has problems or needs medical assistance, it is right there. When Rowan is old enough for camp, this is where he will be able to go.
This is a really neat event that even has a couples challenge in honor of Valentine's Day.
Visit the site below for more information:
http://www.fleetfeettulsa.com/event/sweetheart-run-feb-11/
This is a really neat event that even has a couples challenge in honor of Valentine's Day.
Visit the site below for more information:
http://www.fleetfeettulsa.com/event/sweetheart-run-feb-11/
Friday, January 27, 2012
Really!?! with Elle
Doctors yesterday noted that Rowan's x-ray showed that the fluid in his chest was worsening and determined that another pigtail chest tube would need to be inserted into Rowan's side to actively drain the fluid leading to a section I like to call:
REALLY!?! with Elle
REALLY chest fluid? You HAD to come back? It's not enough that you've reared your ugly head for the last month draining as much as half a liter of fluid a day. I mean REALLY!??!
Rowan needs another tube like Mitt Romney needs a tax break, I mean REALLY!
What's the deal fluid? Do you need a friend? Are you feeling all lonely staying in the cavities you belong in and feel the need to cuddle up to an innocent 7 week old's lungs? I mean REALLY!
Rowan's lungs need another tube to cuddle up to him like Newt needs a 4th wife, I mean REALLY!?
AND what is up with this stuff always showing up when we think we're in the clear, on the fast track to coming home, and Rowan is about to get the breathing tube out, I MEAN REALLY!! Sure, our house is a cute little cookie-cutter and it ocassionally smells like refinery when the wind blows towards the East but it still beat getting sponge baths from murses I mean REALLY!?
So let's cut to the chase - this isn't lymphatic fluid (chylous fluid for fancy pants doctors) and might go away with drug treatment, but it would have been a heck of a lot nicer if this had just stayed away so my son could come home, I mean REALLY!!!!!
REALLY!?! with Elle
REALLY chest fluid? You HAD to come back? It's not enough that you've reared your ugly head for the last month draining as much as half a liter of fluid a day. I mean REALLY!??!
Rowan needs another tube like Mitt Romney needs a tax break, I mean REALLY!
What's the deal fluid? Do you need a friend? Are you feeling all lonely staying in the cavities you belong in and feel the need to cuddle up to an innocent 7 week old's lungs? I mean REALLY!
Rowan's lungs need another tube to cuddle up to him like Newt needs a 4th wife, I mean REALLY!?
AND what is up with this stuff always showing up when we think we're in the clear, on the fast track to coming home, and Rowan is about to get the breathing tube out, I MEAN REALLY!! Sure, our house is a cute little cookie-cutter and it ocassionally smells like refinery when the wind blows towards the East but it still beat getting sponge baths from murses I mean REALLY!?
So let's cut to the chase - this isn't lymphatic fluid (chylous fluid for fancy pants doctors) and might go away with drug treatment, but it would have been a heck of a lot nicer if this had just stayed away so my son could come home, I mean REALLY!!!!!
Wednesday, January 25, 2012
Lessons in freaking out
You'll have to excuse me not updating yesterday, it was a bit of an anxiety-producing day. A pleural effusion (fluid in Rowan's chest) showed up on the chest x-ray yesterday and I didn't want to put a "We're freakin' out!" post up without a good reason. Yes, there is a little bit of fluid now. No, this does not mean the surgery didn't work or that he will need the chest tube put back in. I missed morning rounds yesterday, so I didn't get the doctor update until later in the morning and all I knew was "he did have an effusion on his x-ray" from his nurse. I talked to the fellow and she basically said "It's there, but it's just a smidge. We are going to treat it aggressively." My response: "So it's not time to freak out yet, then?" Well, today the little effusion is still there, but not worse. I was there for rounds this morning and they showed me his x-ray. It really is just a smidge(even with the x-ray being twice his actual size). And they said if it was going to be a problem like before, it would be more serious already and we wouldn't be going down on his vent settings like we are continuing to do! His blood gas levels continue to do well with lower settings and every day he is getting closer to getting that tube out. I think we will throw a party when he has spent more of his life breathing on his own than through the machine. (That will likely be about 7 weeks after he gets extubated.) So priority #1 is getting him there.
The other biggy for him is food. He did really well on his lower rate for two days straight, but did throw up early this morning. So the new plan is slightly lower feeds and leave it alone until he gets extubated. Hopefully, this will be a pretty short wait.
He was getting agitated overnight (maybe cuz he needed to throw up...) and one of his sedation meds is higher than before, but this is perfectly fine with us. We do love to stare at him and for him to be staring back at us, but he will be much better at that once we get him breathing on his own.
We have learned a lot from this little one. Primarily, a lot of patience. But I also know that the way I talk to patients is drastically different than it was before all this (I did a couple half-days in Tulsa in our clinic the week before last). I mentioned the change to a med student that was with me and she asked "Does that mean you're more caring or less?" My response: Yes. More than anything, I think I am much more comfortable being on the doctor side than I was two months ago. I am open with them in saying what is important and what isn't regarding their health. So I am more caring about the things that really affect them and less caring about the things they just don't know are not that big of a deal. Without a medical degree, the average person just isn't going to know that certain things are OK. I know that m'Lady has learned an incredible amount of medicine in the last two months and I do have a medical degree, but even with that it is still difficult to know at times how much we need to freak out. For now, we do like everyone else and just freak out more than is necessary until we're told otherwise. We're getting better at controlling that, but it is a tough change.
I would say it would be nice to have children that weren't so good at teaching us things, but who am I kidding? I would hate to have a boring kid. Luckily, I don't think I am going to have that problem with either of the ones I have now.
The other biggy for him is food. He did really well on his lower rate for two days straight, but did throw up early this morning. So the new plan is slightly lower feeds and leave it alone until he gets extubated. Hopefully, this will be a pretty short wait.
He was getting agitated overnight (maybe cuz he needed to throw up...) and one of his sedation meds is higher than before, but this is perfectly fine with us. We do love to stare at him and for him to be staring back at us, but he will be much better at that once we get him breathing on his own.
We have learned a lot from this little one. Primarily, a lot of patience. But I also know that the way I talk to patients is drastically different than it was before all this (I did a couple half-days in Tulsa in our clinic the week before last). I mentioned the change to a med student that was with me and she asked "Does that mean you're more caring or less?" My response: Yes. More than anything, I think I am much more comfortable being on the doctor side than I was two months ago. I am open with them in saying what is important and what isn't regarding their health. So I am more caring about the things that really affect them and less caring about the things they just don't know are not that big of a deal. Without a medical degree, the average person just isn't going to know that certain things are OK. I know that m'Lady has learned an incredible amount of medicine in the last two months and I do have a medical degree, but even with that it is still difficult to know at times how much we need to freak out. For now, we do like everyone else and just freak out more than is necessary until we're told otherwise. We're getting better at controlling that, but it is a tough change.
I would say it would be nice to have children that weren't so good at teaching us things, but who am I kidding? I would hate to have a boring kid. Luckily, I don't think I am going to have that problem with either of the ones I have now.
Sunday, January 22, 2012
Breathing success
The next few posts will all be Doc guest posts, as m'Lady is going back to Tulsa for a few days. Her grandfather is in the hospital likely for the last time and we felt like she needed to be there for her family. I will have to make it by myself for the time being, but I got to spend some time with Evelyn last night and the first part of today so I think I'll make it. We went to the St. Louis Zoo today and, despite the cold, had a lot of fun. Their bird house has a lot of birds that are different than the ones in Tulsa and the apes were all doing fun things for her to be amazed by. I have asked m'Lady to post pics and more details on the other blog. It is amazing and sad how much Evelyn learns and changes over two weeks while we are apart. She is a spectacular little person and I am looking forward to being home with her. She did very well coming to see her little brother today and just loved getting to see him again. She is going to take such good care of him as soon as he gets home to give her a chance to. Which brings us to the other little one...
Rowan has been on pressure support for a day and a half now, and even got the pressure (how much it helps with his breath) turned down and he is still breathing like a champ. This means he is one day closer to extubation, having one less tube doing something for him. He is awake a lot more and it will be nice to be able to read to him and actually know that he is paying attention to me instead of being zonked out. The only drawback to him being more awake is it seems like the tubes bother him more and he has been spitting up a lot more. They backed up on his feeds a little to help with that, so it is a bit of a one foot forward, one foot backward day. The foot going forward (breathing) will help him get the tube out, though. The tube coming out will make it to where he isn't laying down all the time and we can help him not spit up as much. So the foot backward will not stay behind for long. I think that might have been a terrible analogy, but try reading it a second time if you need to.
-Doc
Rowan has been on pressure support for a day and a half now, and even got the pressure (how much it helps with his breath) turned down and he is still breathing like a champ. This means he is one day closer to extubation, having one less tube doing something for him. He is awake a lot more and it will be nice to be able to read to him and actually know that he is paying attention to me instead of being zonked out. The only drawback to him being more awake is it seems like the tubes bother him more and he has been spitting up a lot more. They backed up on his feeds a little to help with that, so it is a bit of a one foot forward, one foot backward day. The foot going forward (breathing) will help him get the tube out, though. The tube coming out will make it to where he isn't laying down all the time and we can help him not spit up as much. So the foot backward will not stay behind for long. I think that might have been a terrible analogy, but try reading it a second time if you need to.
-Doc
Saturday, January 21, 2012
Just Breathe....
Rowan is tolerating full feeds of 30mL an hour now. He's a big kid, so to get him some more calories, they are going to start fortifying his food tomorrow to make sure he gets enough nutrition. He hasn't had any more crazy allergic reactions to things we can't detect (knock on wood) and has been on pressure support all day.
Pressure support = When Rowan takes a breath in, the ventilator helps him by adding pressure to let him inhale. The machine doesn't give him breaths, just helps when he takes them.
He is way more awake now. He LOVES eye contact. He gives the nurses dirty looks just like Matt's Grandma used to. He also looks for where the machine beeps are coming from.
Earlier, he was breathing really fast (like 70 times a minute). His blood gas levels were fine, but it was not ideal for him to breath that fast. SO - Dr. Doctor to the rescue! The Doc, fellow, nurse, and I stood around his bed with our arms crossed and just stared at the machine, then at him, for about 10 minutes. After the first two minutes, I kept trying not to laugh because we were all just standing there. The Doc eventually gave him a little more pressure and he is doing much better.
The chest tube is continuing to drain less and less and his x-rays have shown no fluid build up. This is fantastic news! ALSO - Rowan's pancreas is functioning normally. CF kids can have a form that is either pancreatic insufficient or pancreatic sufficient. Rowan's works, so this means that at least for now, he will not have to worry about taking enzymes everytime he eats. His body should absorb fats and proteins correctly and he shouldn't have many problems with digestive system. This means that his CF could be much less intrusive than some forms, which is wonderful.
I do think that getting him off the ventilator is going to take a LONG time even without more hiccups. Being on a respirator for 6 weeks isn't something you can recover quickly from. We're expecting the stay here to be at least a few more weeks. He could surprise us, but we are planning to settle in for a bit longer. BUT I do believe he's going to come home. Which is awesome.
Pressure support = When Rowan takes a breath in, the ventilator helps him by adding pressure to let him inhale. The machine doesn't give him breaths, just helps when he takes them.
He is way more awake now. He LOVES eye contact. He gives the nurses dirty looks just like Matt's Grandma used to. He also looks for where the machine beeps are coming from.
Earlier, he was breathing really fast (like 70 times a minute). His blood gas levels were fine, but it was not ideal for him to breath that fast. SO - Dr. Doctor to the rescue! The Doc, fellow, nurse, and I stood around his bed with our arms crossed and just stared at the machine, then at him, for about 10 minutes. After the first two minutes, I kept trying not to laugh because we were all just standing there. The Doc eventually gave him a little more pressure and he is doing much better.
The chest tube is continuing to drain less and less and his x-rays have shown no fluid build up. This is fantastic news! ALSO - Rowan's pancreas is functioning normally. CF kids can have a form that is either pancreatic insufficient or pancreatic sufficient. Rowan's works, so this means that at least for now, he will not have to worry about taking enzymes everytime he eats. His body should absorb fats and proteins correctly and he shouldn't have many problems with digestive system. This means that his CF could be much less intrusive than some forms, which is wonderful.
I do think that getting him off the ventilator is going to take a LONG time even without more hiccups. Being on a respirator for 6 weeks isn't something you can recover quickly from. We're expecting the stay here to be at least a few more weeks. He could surprise us, but we are planning to settle in for a bit longer. BUT I do believe he's going to come home. Which is awesome.
Friday, January 20, 2012
Another interesting day in the CICU
Doc guest post
So apparently the milrinone allergy is unbelievable. Literally. An attending that we love that has been gone for a while was there for night rounds and heard about his reaction and was flabbergasted. Quote: "No no, I believe that it happened, just...milrinone? We've given that to like 800,000 people...we use that stuff like water!" So that's fun.
For actual update stuff, he is doing well today. He went longer on the breathe-by-yourself mode today than he has done before. This will likely be even better when he gets some more blood (he was a little low again). His chest tube is still draining some but not anything like before. We still won't know for sure if surgery was successful until he gets back up to full feeds. He is actually halfway there as of a few hours ago and will be up to full by the morning if things keep progressing. And big news: his pancreas works well enough that he won't need to take enzymes with his food! This was expected with the mutations that he has, but it was not definite until today. This doesn't mean that he will never need enzymes, but it might be a long time if ever.
We actually didn't even get to the hospital until about 3 PM today, as we needed to do laundry (it took 5 hours to do two loads because of the washer/dryer being used by staff and the dryer taking forever to dry things) and what started off as a simple oil change turned in to me getting two new tires for the Versa.
I also learned today that I have been calling a different number than the main CICU number. When I called to ask about Rowan this morning the person said "Well, this is Dr. ... I can give you an update" Would I like to get the update directly from the attending? I would love to!
MID-POST UPDATE:
Um, maybe it's not a milrinone allergy? They started him back on Nipride, which he was on last night, and the splotchy rash came back, though this was an hour and a half after. Fan-stinking-tastic. He is getting some benadryl and some confused looks from the docs as to what he is doing now...
So apparently the milrinone allergy is unbelievable. Literally. An attending that we love that has been gone for a while was there for night rounds and heard about his reaction and was flabbergasted. Quote: "No no, I believe that it happened, just...milrinone? We've given that to like 800,000 people...we use that stuff like water!" So that's fun.
For actual update stuff, he is doing well today. He went longer on the breathe-by-yourself mode today than he has done before. This will likely be even better when he gets some more blood (he was a little low again). His chest tube is still draining some but not anything like before. We still won't know for sure if surgery was successful until he gets back up to full feeds. He is actually halfway there as of a few hours ago and will be up to full by the morning if things keep progressing. And big news: his pancreas works well enough that he won't need to take enzymes with his food! This was expected with the mutations that he has, but it was not definite until today. This doesn't mean that he will never need enzymes, but it might be a long time if ever.
We actually didn't even get to the hospital until about 3 PM today, as we needed to do laundry (it took 5 hours to do two loads because of the washer/dryer being used by staff and the dryer taking forever to dry things) and what started off as a simple oil change turned in to me getting two new tires for the Versa.
I also learned today that I have been calling a different number than the main CICU number. When I called to ask about Rowan this morning the person said "Well, this is Dr. ... I can give you an update" Would I like to get the update directly from the attending? I would love to!
MID-POST UPDATE:
Um, maybe it's not a milrinone allergy? They started him back on Nipride, which he was on last night, and the splotchy rash came back, though this was an hour and a half after. Fan-stinking-tastic. He is getting some benadryl and some confused looks from the docs as to what he is doing now...
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