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...
Back On Track
Well, Rowan is set for being on track for recovery.
He is back to being on pressure support only (all breaths he takes on his own but there is some assistance once he starts them) for a few hours at a time. He's been on it for about 5-6 hours doing well! He also has been tolerating being fed again really well AND being on lower doses of sedation.
Let's keep slowly trucking along! Go Row Row!
He is back to being on pressure support only (all breaths he takes on his own but there is some assistance once he starts them) for a few hours at a time. He's been on it for about 5-6 hours doing well! He also has been tolerating being fed again really well AND being on lower doses of sedation.
Let's keep slowly trucking along! Go Row Row!
Thursday, January 19, 2012
Set Backs Strike Again
Yesterday's goals and progress made:
Poop - Twice!
Start TPN - pharmacy was backed up so this didn't happen until 6:30PM despite being ordered early morning - but it did happen.
Increase Lovenox - did that, and his blood tests showed the results they wanted from this med.
Decrease Respiratory Rate on the Vent - He went from 36 when post op to 6 last night!
Which brings us to last night:
One of the doctors recommended using this blood pressure medication (which basically works by making the heart squeeze more effectively when it pumps) because sometimes it helps kids get off the respirator more easily. Sounded great! So they gave it to Rowan and he almost immediately broke out in a splotchy red rash. This was really surprising because he was on this blood pressure medication for nearly two weeks after his surgery. They stopped the medicine, gave him benadryl, and when he'd calmed down - they tried it again. Same red rash reaction. So they're confident it was the Milrinone that made him break out and not some other coincidental thing. He now has a drug allergy. His reactions to the Milrinone made him pretty upset and caused some respitory distress, so they upped his respitory rate to 20 to help him recover.
Cue our walk in this morning - he's on more pumps of medication, his rate on the vent is much higher than we'd left it, and they'd ordered an ultrasound to check his abdomen because it was still slightly swollen (as it had been since he went to surgery even though it had been getting better since he started pooping yesterday). Also, his chest tube put out 40 mL last night. That seemed like a big increase from the 20 some-odd in the 12 hours before that. We were concerned.
He's on two medications that together do what the Milrinone does to help him with his respitory rate. He is back down to a rate of 16 now and they are weaning him again since his allergic reaction has recovered. He's continued to poop. His belly is getting softer, and even though his chest tube is still putting out some, we are trying to stay calm and see what happens. This is still likely to just be normal post-op drainage.
We are planning on trial running having Evelyn join us in St. Louis for a while this weekend. If she does well with being at the hospital more, we are going to try to keep her with us. The advantages being that she gets to see brother more, we are forced to not sit at his bedside and watch numbers all day, and we both miss her a ton and with my grandpa's health, it allows my family to take care of what they need to...but mostly because we miss her.
We'd hoped this would be surgery - recovery - go home. But I think we may be here much longer than we'd like. I still think it could easily be another month or more before Rowan gets to come home. We may need to look at how to make Rowan being in the hospital our new "normal" for a while.
Poop - Twice!
Start TPN - pharmacy was backed up so this didn't happen until 6:30PM despite being ordered early morning - but it did happen.
Increase Lovenox - did that, and his blood tests showed the results they wanted from this med.
Decrease Respiratory Rate on the Vent - He went from 36 when post op to 6 last night!
Which brings us to last night:
One of the doctors recommended using this blood pressure medication (which basically works by making the heart squeeze more effectively when it pumps) because sometimes it helps kids get off the respirator more easily. Sounded great! So they gave it to Rowan and he almost immediately broke out in a splotchy red rash. This was really surprising because he was on this blood pressure medication for nearly two weeks after his surgery. They stopped the medicine, gave him benadryl, and when he'd calmed down - they tried it again. Same red rash reaction. So they're confident it was the Milrinone that made him break out and not some other coincidental thing. He now has a drug allergy. His reactions to the Milrinone made him pretty upset and caused some respitory distress, so they upped his respitory rate to 20 to help him recover.
Cue our walk in this morning - he's on more pumps of medication, his rate on the vent is much higher than we'd left it, and they'd ordered an ultrasound to check his abdomen because it was still slightly swollen (as it had been since he went to surgery even though it had been getting better since he started pooping yesterday). Also, his chest tube put out 40 mL last night. That seemed like a big increase from the 20 some-odd in the 12 hours before that. We were concerned.
He's on two medications that together do what the Milrinone does to help him with his respitory rate. He is back down to a rate of 16 now and they are weaning him again since his allergic reaction has recovered. He's continued to poop. His belly is getting softer, and even though his chest tube is still putting out some, we are trying to stay calm and see what happens. This is still likely to just be normal post-op drainage.
We are planning on trial running having Evelyn join us in St. Louis for a while this weekend. If she does well with being at the hospital more, we are going to try to keep her with us. The advantages being that she gets to see brother more, we are forced to not sit at his bedside and watch numbers all day, and we both miss her a ton and with my grandpa's health, it allows my family to take care of what they need to...but mostly because we miss her.
We'd hoped this would be surgery - recovery - go home. But I think we may be here much longer than we'd like. I still think it could easily be another month or more before Rowan gets to come home. We may need to look at how to make Rowan being in the hospital our new "normal" for a while.
Wednesday, January 18, 2012
Surgery Summary and Update
Rowan's surgery lasted about 2 hours yesterday and was "boring" to quote the surgeon. They gave him some heavy whipping cream (yes, heavy whipping cream) through his feeding tube to make his body produce more of the fluid that had been draining out his chest tube. That way during the surgery they would be able to see where the fluid was coming from and clamp the tubes.
Well, as Rowan would have it, he'd really slowed down the chest tube fluid yeesterday to almost nothing - and when he went down to surgery...the cream did nothing. They didn't see any fluid. They went ahead and stitched a few places to make sure that they were keeping the fluid from coming back - then they super loaded him with heavy whipping cream to see if anything came out. Nada. Since surgery, his tube has put out minimal amounts of fluid that look like normal post-op drainage. His x-ray looked good so it isn't pooling somewhere else.
Long story short - looks like the fluid is gone...but it may or may not have been the surgery. Oh well! Moving on!
Since his surgery, he has been doing well at going back down to lower support from his ventilator. He hasn't had a bowel movement (NOT AGAIN) so they are holding his feeds and trying some laxatives to get things moving. Not that I can blame him...they gave a lot of heavy whipping cream.
They are also lowering some of his sedation and weaning him off the narcotics in place of some that are given in doses instead of drips. He has needed some fluid added because of lower blood pressures post-op but is stable and they are controlling it. It should normalize within a few days.
His goals for today:
Poop
Down Rate on Ventilator
TPN (IV feeds until his digestive system starts moving again)
Increase Lovenox (blood thinner he will be on until he switches to aspirin because of the shunt in his heart repair - not because of any problems)
We're settling in for slow progression to home now. The sooner he poops the sooner we'll feel better about him being ready to just...recover. I really am struggling with being away from Evelyn this long. I miss my little girl and I'm hopeful that Rowan will be moved to a normal floor soon so she can come stay with us and spend time with her little brother. My grandpa is also in the hospital for what will be the last time. His health had been deteriorating for a while, so this is not unexpected, but still a trying time for my family and it is hard to not be able to be there for my granda.
I think one of the hardest things about being in the hospital for almost 6 weeks now with Rowan is that the world around you doesn't wait until your son is better. It keeps moving and leaves you behind.
Well, as Rowan would have it, he'd really slowed down the chest tube fluid yeesterday to almost nothing - and when he went down to surgery...the cream did nothing. They didn't see any fluid. They went ahead and stitched a few places to make sure that they were keeping the fluid from coming back - then they super loaded him with heavy whipping cream to see if anything came out. Nada. Since surgery, his tube has put out minimal amounts of fluid that look like normal post-op drainage. His x-ray looked good so it isn't pooling somewhere else.
Long story short - looks like the fluid is gone...but it may or may not have been the surgery. Oh well! Moving on!
Since his surgery, he has been doing well at going back down to lower support from his ventilator. He hasn't had a bowel movement (NOT AGAIN) so they are holding his feeds and trying some laxatives to get things moving. Not that I can blame him...they gave a lot of heavy whipping cream.
They are also lowering some of his sedation and weaning him off the narcotics in place of some that are given in doses instead of drips. He has needed some fluid added because of lower blood pressures post-op but is stable and they are controlling it. It should normalize within a few days.
His goals for today:
Poop
Down Rate on Ventilator
TPN (IV feeds until his digestive system starts moving again)
Increase Lovenox (blood thinner he will be on until he switches to aspirin because of the shunt in his heart repair - not because of any problems)
We're settling in for slow progression to home now. The sooner he poops the sooner we'll feel better about him being ready to just...recover. I really am struggling with being away from Evelyn this long. I miss my little girl and I'm hopeful that Rowan will be moved to a normal floor soon so she can come stay with us and spend time with her little brother. My grandpa is also in the hospital for what will be the last time. His health had been deteriorating for a while, so this is not unexpected, but still a trying time for my family and it is hard to not be able to be there for my granda.
I think one of the hardest things about being in the hospital for almost 6 weeks now with Rowan is that the world around you doesn't wait until your son is better. It keeps moving and leaves you behind.
Monday, January 16, 2012
Surgery Scheduled
The surgeon came by today to reassess Rowan's chest tube output. Since his heart looks really good from the cardiac cath and there are no clots, blocks, pressure issues, etc., they aren't really sure what is going on. There is still a chance that the fluid is coming up from below the diaphram. The thought is that somewhere along the line, there was damage to the lymphatic system. Think of this like a third circulation (arteries, veins, and lymphatics) in which all the stuff that doesn't come back through the veins gets back to the heart through these channels.
However, the "end all" treatment for this is a Thorasic Duct Ligation - a surgery where they stitch a few places in lymphatic ducts to try to lower the fluid output level. Let me say, that even after dealing with this for several weeks, and reading up on lymphatic fluid output, I still feel like an idiot child in regards to the way this surgery works or why it works. Needless to say, the surgeon did mention that this might not work. BUT there are definitely risks to letting this fluid continue to drain much longer.
We've been anticipating the need for this surgery for a while, so we're comfortable with this plan. We are hoping that something more definitive can be ascertained about where the fluid is coming from prior to taking Rowan to the OR tomorrow.
We'd rather go ahead and get this done than drag out the drainage, the plasma replacements he needs because of the drainage, and the trouble breathing this fluid is causing. So we feel good about this.
So Rowan gets to rest today, and tomorrow we'll see if we can't help him out a little.
However, the "end all" treatment for this is a Thorasic Duct Ligation - a surgery where they stitch a few places in lymphatic ducts to try to lower the fluid output level. Let me say, that even after dealing with this for several weeks, and reading up on lymphatic fluid output, I still feel like an idiot child in regards to the way this surgery works or why it works. Needless to say, the surgeon did mention that this might not work. BUT there are definitely risks to letting this fluid continue to drain much longer.
We've been anticipating the need for this surgery for a while, so we're comfortable with this plan. We are hoping that something more definitive can be ascertained about where the fluid is coming from prior to taking Rowan to the OR tomorrow.
We'd rather go ahead and get this done than drag out the drainage, the plasma replacements he needs because of the drainage, and the trouble breathing this fluid is causing. So we feel good about this.
So Rowan gets to rest today, and tomorrow we'll see if we can't help him out a little.
Sunday, January 15, 2012
Weird Day
So last night, Rowan got pretty irritated and wouldn't really calm down. His respitory rate, pulse, and blood pressure all got too high and weren't coming down very quickly, so they went ahead and set his respirator to make him take at least 8 breaths a minute that were a little deeper to keep him from breathing so fast, and he calmed down.
Later that morning, they realized that his IV had gone bad. Unfortunently, it was the one that was keeping him sedated so he'd be comfortable while he has a tube down each nostril and his trachea. Needless to say, he got REALLY MAD when they tried to put a new IV in. The IV team came to try to find a place to put a new one and had no luck. So they moved his sedation to his PICC line which isn't a big deal because he is no longer receiving IV nutrition - thanks to the fact that he is now tolerating feeds up to 22 mL an hour (we're almost to an ounce an hour!).
He may need another IV placed or even another PICC line, but that depends on how well he keeps this feeding going and whether or not the stupid chest tube fluid goes away.
The amount of fluid has been going steadily down, but it is still A LOT of fluid. Yesterday they had right under 300 mL of fluid from his tube, and from 7 AM to 3 PM today...had 27mL. Most people would think "WAHOO! It's going away!!!!" But we were pretty skeptical. Never trust progress in the ICU if it isn't painfully slow.
Sure enough, at about 4, they got whatever was clogging things up out of the tube and drained 87mL off of him. Needless to say, he looks more comfortable and we are looking at a similar output to yesterday now. Maybe a little lower.
Is this progression? Maybe. He's still putting off way to much fluid for extubation to be a possibility. We still have time for the steroids to work. Tomorrow morning is the "big rounds" for the week when all the doctors discuss plans for the rest of the week. We'll see what they think tomorrow.
Later that morning, they realized that his IV had gone bad. Unfortunently, it was the one that was keeping him sedated so he'd be comfortable while he has a tube down each nostril and his trachea. Needless to say, he got REALLY MAD when they tried to put a new IV in. The IV team came to try to find a place to put a new one and had no luck. So they moved his sedation to his PICC line which isn't a big deal because he is no longer receiving IV nutrition - thanks to the fact that he is now tolerating feeds up to 22 mL an hour (we're almost to an ounce an hour!).
He may need another IV placed or even another PICC line, but that depends on how well he keeps this feeding going and whether or not the stupid chest tube fluid goes away.
The amount of fluid has been going steadily down, but it is still A LOT of fluid. Yesterday they had right under 300 mL of fluid from his tube, and from 7 AM to 3 PM today...had 27mL. Most people would think "WAHOO! It's going away!!!!" But we were pretty skeptical. Never trust progress in the ICU if it isn't painfully slow.
Sure enough, at about 4, they got whatever was clogging things up out of the tube and drained 87mL off of him. Needless to say, he looks more comfortable and we are looking at a similar output to yesterday now. Maybe a little lower.
Is this progression? Maybe. He's still putting off way to much fluid for extubation to be a possibility. We still have time for the steroids to work. Tomorrow morning is the "big rounds" for the week when all the doctors discuss plans for the rest of the week. We'll see what they think tomorrow.
Friday, January 13, 2012
Friday the 13th
Medical update: WHO CARES!?!? WE GOT TO HOLD ROWAN TODAY!!!!
The nurse we had today was spectacular. She had me help during her assessments by showing me how to use their temperature slips and letting me take care of his diaper changes. She also told us this morning that they needed to replace his NG tube and after that she'd give us some time to hold him.
WHAT?!!?
We had been told that it's okay to hold babies when they are intubated, but it's really up to how comfortable the nurse feels with it and we didn't expect it to happen until after they got the tube out.
So early this afternoon, our nurse wheeled his IV pole over next to his respirator, I pulled up a chair, and for the first time since I got to briefly hold him after he was born - Rowan got to snuggle up against me and I got to hold my poor little fighter.
After Rowan was born, Matt was allowed to hold him long enough to bring him the five feet from the doctor to my bed. I held him long enough to tell him "Happy Birthday" "I love you" and "see you soon" before they took him to the NICU. That was all either of us had been able to really be close to our son. When his CF diagnosis happened and they told us we might lose him - my first thought was that I wouldn't get to hold him again while he was alive. I realized that the first time I might get to really hold my son would be when the breath had left him. That fear of not holding him again has been near constant.
Today, I got to stare down into his little eyes and watch him cuddle up and drift off to sleep. I got to sing to him and tell him about our home and his sister and when his dad and I first met. I got to feel his little heart beat and his chest rise and fall.
There had also been a little fear that because of all he'd been through, he might not like being held or touched at first. Pretty sure he loved it. He seemed so happy and peaceful. I held him until one of my arms went completely numb, and then Matt got his turn. Even with all those tubes, he's still our little man. Our son. And we know what it's like to hold him in our arms now.
Great. Day.
The nurse we had today was spectacular. She had me help during her assessments by showing me how to use their temperature slips and letting me take care of his diaper changes. She also told us this morning that they needed to replace his NG tube and after that she'd give us some time to hold him.
WHAT?!!?
We had been told that it's okay to hold babies when they are intubated, but it's really up to how comfortable the nurse feels with it and we didn't expect it to happen until after they got the tube out.
So early this afternoon, our nurse wheeled his IV pole over next to his respirator, I pulled up a chair, and for the first time since I got to briefly hold him after he was born - Rowan got to snuggle up against me and I got to hold my poor little fighter.
After Rowan was born, Matt was allowed to hold him long enough to bring him the five feet from the doctor to my bed. I held him long enough to tell him "Happy Birthday" "I love you" and "see you soon" before they took him to the NICU. That was all either of us had been able to really be close to our son. When his CF diagnosis happened and they told us we might lose him - my first thought was that I wouldn't get to hold him again while he was alive. I realized that the first time I might get to really hold my son would be when the breath had left him. That fear of not holding him again has been near constant.
Today, I got to stare down into his little eyes and watch him cuddle up and drift off to sleep. I got to sing to him and tell him about our home and his sister and when his dad and I first met. I got to feel his little heart beat and his chest rise and fall.
There had also been a little fear that because of all he'd been through, he might not like being held or touched at first. Pretty sure he loved it. He seemed so happy and peaceful. I held him until one of my arms went completely numb, and then Matt got his turn. Even with all those tubes, he's still our little man. Our son. And we know what it's like to hold him in our arms now.
Great. Day.
Thursday, January 12, 2012
Chest Tube Fluid Still Going Strong
Today the doctors ordered a CT of Rowan's abdomen to try to solve the mystery of the chest tube fluid that JUST WON'T STOP. They want to make sure that they understand where the source of the fluid is. It is possible that the fluid is being secreted by his abdomen and moving up through a communication (fancy word for hole) in his diaphram. If that is the case, trying to clamp the channel that secretes fluid in the chest wouldn't help Rowan and would be a surgery that was unnecessary and didn't solve the problem. If the fluid is coming from the abdomen, they would clamp a different channel in the abdomen to fix the problem.
(Medical people: we are looking at either a thorasic duct ligation or a cisterna chyli ligation)
We should hear the CT results soon. It may be a few days until they get him to surgery and a few more days before we see results and remove the drain for good.
Meanwhile, Rowan is being fed through his NG tube and they are progressing the rate of his feedings slowly to build up his digestive system. They are also lowering the support his vent provides. He will not likely be extubated for a while, but when they are ready to remove the vent, he will be more prepared.
Alot people have been asking for specifics. What specific outcome we want for things or what they should specifically pray for. Unfortunently, since we don't have any definites, here are the general guidelines for those of you who are inclined to practice faith through prayer:
1.) That the doctors examine all possibilities and find the right answer to the current problem (in this case, chest tube fluid).
2.) That all of the procedures Rowan undergoes have no complications.
3.) That Rowan doesn't throw up
4.) That Matt and I sleep well when we are at Haven House.
5.) That our daughter remains undisturbed by our absence.
6.) Safe traveling between Haven House and the hospital.
Thank you to everyone who has been providing help and support. We'd especially like to thank:
Pat and Amanda Ball
Scott, Diane, Isa, and Maya Fowler
Janis Fowler
Eric, Janell, Meredith, and Madison Millington
Sarah Hall
Tara Claussen and Jason McElyea
Lora Cotton
Dr. Sharma
The ENTIRE staff at West Intermediate and Dr. Lehman
Brenda Wilson
Paige Lindemann
Pat Millington
Other Heart Families who are always there to listen
We continue to see progress and enjoy time with our son. We feel like the last 3 weeks here in St. Louis have gone on forever - but count ourselves lucky that he is progressing and healing. Last night Matt and I went on a date and didn't allow any talk about our children. It was a nice 2 hour mental break and "battery recharge". We are coping well and remain optimistic.
(Medical people: we are looking at either a thorasic duct ligation or a cisterna chyli ligation)
We should hear the CT results soon. It may be a few days until they get him to surgery and a few more days before we see results and remove the drain for good.
Meanwhile, Rowan is being fed through his NG tube and they are progressing the rate of his feedings slowly to build up his digestive system. They are also lowering the support his vent provides. He will not likely be extubated for a while, but when they are ready to remove the vent, he will be more prepared.
Alot people have been asking for specifics. What specific outcome we want for things or what they should specifically pray for. Unfortunently, since we don't have any definites, here are the general guidelines for those of you who are inclined to practice faith through prayer:
1.) That the doctors examine all possibilities and find the right answer to the current problem (in this case, chest tube fluid).
2.) That all of the procedures Rowan undergoes have no complications.
3.) That Rowan doesn't throw up
4.) That Matt and I sleep well when we are at Haven House.
5.) That our daughter remains undisturbed by our absence.
6.) Safe traveling between Haven House and the hospital.
Thank you to everyone who has been providing help and support. We'd especially like to thank:
Pat and Amanda Ball
Scott, Diane, Isa, and Maya Fowler
Janis Fowler
Eric, Janell, Meredith, and Madison Millington
Sarah Hall
Tara Claussen and Jason McElyea
Lora Cotton
Dr. Sharma
The ENTIRE staff at West Intermediate and Dr. Lehman
Brenda Wilson
Paige Lindemann
Pat Millington
Other Heart Families who are always there to listen
We continue to see progress and enjoy time with our son. We feel like the last 3 weeks here in St. Louis have gone on forever - but count ourselves lucky that he is progressing and healing. Last night Matt and I went on a date and didn't allow any talk about our children. It was a nice 2 hour mental break and "battery recharge". We are coping well and remain optimistic.
No sign of a dry up
Rowan is doing really well. They are continuing to wean him off of the respirator slowly. He is no longer receiving the "flush" for his system and is tolerating feeds through his NG tube well. He wakes up and looks at us and plays.
However, there is still no explaination for the fluid coming out of his chest tube. They aren't sure if it is coming from the area by his heart and lungs or if it is coming up from below his diaphram. There is a likely surgical fix to this, but deciding where the fluid is coming from is important for that to be successful. Today the doctors and surgeon are meeting to figure out what the best route is for determining the source.
Once we can sort out this chest tube fluid issue, we should be clear for actual recovery.
It will likely be a slow few days ahead with little to report, so remember...
No News is Good News
However, there is still no explaination for the fluid coming out of his chest tube. They aren't sure if it is coming from the area by his heart and lungs or if it is coming up from below his diaphram. There is a likely surgical fix to this, but deciding where the fluid is coming from is important for that to be successful. Today the doctors and surgeon are meeting to figure out what the best route is for determining the source.
Once we can sort out this chest tube fluid issue, we should be clear for actual recovery.
It will likely be a slow few days ahead with little to report, so remember...
No News is Good News
Monday, January 9, 2012
Progress as Promised
Rowan is continuing to wake his digestive system up. We are waiting to see that all of the dye from his enema has passed through his system. Once his stool turns clear instead of the vivid green that is all the meconium left in there, they will start feeding him. He has still not thrown up.
Today he officially came off one blood pressure medication. Then he came of the remaining one in favor of a form of the medicine that he will be taking when he comes home. He will get blood pressure meds when he comes home and has been doing wonderful with that medication change.
The doctors have also begun to lower his ventilation settings on his respirator as well. He's been responding really well to that. We thought they wouldn't even start to lower his support on the machine for another week, so any small step there is almost like being ahead of schedule.
The amount of fluid coming out of his chest tube is still too much. It does seem to be going down really slowly, but not enough to know for sure that the fluid is drying up/going away.
Today we gave him a little plastic tube to hold and he waved it around for about ten minutes. I might see if I can find some wrist rattles for him tonight. He likes to move his right arm because it doesn't have any tubes in it. It is fun to watch him "play".
This evening he started crying and got really red-faced and mad. He was flailing his arms and legs and making angry faces...but none of his vital changed. His respiration rate and blood pressure were completely normal and his pulse went up just a little. After about 25 minutes he calmed down. He wasn't acting like he does when he's in pain. He wasn't squirming or writhing or squishing up his face real bad.
...I think he was throwing a fit.
Awesome.
Today he officially came off one blood pressure medication. Then he came of the remaining one in favor of a form of the medicine that he will be taking when he comes home. He will get blood pressure meds when he comes home and has been doing wonderful with that medication change.
The doctors have also begun to lower his ventilation settings on his respirator as well. He's been responding really well to that. We thought they wouldn't even start to lower his support on the machine for another week, so any small step there is almost like being ahead of schedule.
The amount of fluid coming out of his chest tube is still too much. It does seem to be going down really slowly, but not enough to know for sure that the fluid is drying up/going away.
Today we gave him a little plastic tube to hold and he waved it around for about ten minutes. I might see if I can find some wrist rattles for him tonight. He likes to move his right arm because it doesn't have any tubes in it. It is fun to watch him "play".
This evening he started crying and got really red-faced and mad. He was flailing his arms and legs and making angry faces...but none of his vital changed. His respiration rate and blood pressure were completely normal and his pulse went up just a little. After about 25 minutes he calmed down. He wasn't acting like he does when he's in pain. He wasn't squirming or writhing or squishing up his face real bad.
...I think he was throwing a fit.
Awesome.
Sunday, January 8, 2012
Meet Little Brother
Medically, no real changes. Rowan is keeping along on his slow track to recovery. No new steps planned, just giving him time to adjust.
However, we had a wonderful event today. Evelyn, our 2 year old daughter, finally got to meet her little brother.
We prepared her over the last few weeks by talking about Baby Rowan and showing her pictures of him with the tubes in. We talked about how Rowan was okay, he just needed help at the hospital.
We took her up and told her that this hospital was were Baby Rowan was being taken care of and where we go when we go see him to take care of him. When we went in, she seemed a little afraid of all of the strangers, but when we showed her Rowan and introduced her, the first thing she did was say "Hi Baby Rowan" "He's cute" and "awe" and "look at baby Rowan". She didn't even seem a little afraid. She wanted to touch him so we let her rub his tummy over his blankets and she was beautifully gentle with him. He was awake and seemed extremely interested in her. He kept watching her while she talked to him. She even showed him his stuffed animal mobil and talked about the different animals, asking "see it Rowan?"
I was so proud of her and so happy that we waited until we'd prepared her and she was ready. We only let her visit for about 5 minutes, then we had her say "bye" and "I love you" to Rowan before she left. We spent some time exploring the hospital too.
Now she and my husband are on the road back to Tulsa. Matt has to work for a few days to make sure he sees enough patients in clinic for his intern year and then he'll come back up to St. Louis on Wednesday or Thursday. My dad is staying here in St. Louis with me, so don't worry. I'm not alone.
All in all, an incredible day. Our first time together as a family. I'm excited for a few weeks from now when that is a normal occurance.
However, we had a wonderful event today. Evelyn, our 2 year old daughter, finally got to meet her little brother.
We prepared her over the last few weeks by talking about Baby Rowan and showing her pictures of him with the tubes in. We talked about how Rowan was okay, he just needed help at the hospital.
We took her up and told her that this hospital was were Baby Rowan was being taken care of and where we go when we go see him to take care of him. When we went in, she seemed a little afraid of all of the strangers, but when we showed her Rowan and introduced her, the first thing she did was say "Hi Baby Rowan" "He's cute" and "awe" and "look at baby Rowan". She didn't even seem a little afraid. She wanted to touch him so we let her rub his tummy over his blankets and she was beautifully gentle with him. He was awake and seemed extremely interested in her. He kept watching her while she talked to him. She even showed him his stuffed animal mobil and talked about the different animals, asking "see it Rowan?"
I was so proud of her and so happy that we waited until we'd prepared her and she was ready. We only let her visit for about 5 minutes, then we had her say "bye" and "I love you" to Rowan before she left. We spent some time exploring the hospital too.
Now she and my husband are on the road back to Tulsa. Matt has to work for a few days to make sure he sees enough patients in clinic for his intern year and then he'll come back up to St. Louis on Wednesday or Thursday. My dad is staying here in St. Louis with me, so don't worry. I'm not alone.
All in all, an incredible day. Our first time together as a family. I'm excited for a few weeks from now when that is a normal occurance.
Saturday, January 7, 2012
He keeps going, and going...
Doc guest post.
He had two more start and stops with the Golytely (stuff he's getting to flush through his system), but we are now 16 hours and 43 mL in without things coming back up! They went up on the amount he is getting about 5 hours ago and things are looking good. He is still stooling well and his belly is softening up.
He has a lot of fluid coming out of his chest tube and this is not really responding to the medicine. Not really much in the way of answers for this so far. There is some thought that getting his belly working will help this out, but that remains to be seen.
Other numbers are looking good, so we're taking things one problem at a time and moving ahead.
Doc
He had two more start and stops with the Golytely (stuff he's getting to flush through his system), but we are now 16 hours and 43 mL in without things coming back up! They went up on the amount he is getting about 5 hours ago and things are looking good. He is still stooling well and his belly is softening up.
He has a lot of fluid coming out of his chest tube and this is not really responding to the medicine. Not really much in the way of answers for this so far. There is some thought that getting his belly working will help this out, but that remains to be seen.
Other numbers are looking good, so we're taking things one problem at a time and moving ahead.
Doc
Thursday, January 5, 2012
We have lift-off!
Doc guest post:
Well, Rowan went down for a repeat of his Gastrograffin enema and it was cancelled...because they took his diaper off and he just started pooping like crazy. That was about half an hour ago and they just brought him back, nurse says that he is still going now. What this means is for whatever reason, whether it was getting his medicines down enough, starting physical therapy, or some unknown whatever-the-heck was going on, his bowels are working like they should now.
Plan now is step 1: try the NuLytely (fluid through his NG tube to help flush things through) again. Step 2: Work up to feeding. Other steps thrown in: hopefully the fluid in his chest slows down/stops and that allows them to wean the ventilator again.
Apparently, he just likes to make things more interesting than they already would have been. In payback, it will make a good story to tell his girlfriends some day.
Well, Rowan went down for a repeat of his Gastrograffin enema and it was cancelled...because they took his diaper off and he just started pooping like crazy. That was about half an hour ago and they just brought him back, nurse says that he is still going now. What this means is for whatever reason, whether it was getting his medicines down enough, starting physical therapy, or some unknown whatever-the-heck was going on, his bowels are working like they should now.
Plan now is step 1: try the NuLytely (fluid through his NG tube to help flush things through) again. Step 2: Work up to feeding. Other steps thrown in: hopefully the fluid in his chest slows down/stops and that allows them to wean the ventilator again.
Apparently, he just likes to make things more interesting than they already would have been. In payback, it will make a good story to tell his girlfriends some day.
Wednesday, January 4, 2012
No Answers
They did a diagnostic test on Rowan yesterday (Upper GI and gastrograffin enema) to check out his digestive system. The good news is that he doesn't have any obstructions and there are no twists or bends in his intestines that could cause problems. The bad news is, there isn't really any good reason for things to not be moving that is an easy fix.
Likely, it is simply that he was dehydrated for a while after being diuresed and that he hasn't had any oral feedings combined with all the medicines he is getting that slow down his belly. All feedings have been through IV, so he hasn't really had much to make stool from so his smooth muscle tissue can pass it through his system.
The plan today is to give him a sort of intestinal "flush" to clear out some gas bubbles and get things moving a little bit. If he throws up like the other times, this will not work.
They've had to increase his ventilator support, he may need more blood given to him today, and his vitals are not looking as strong (namely NIRS and Sats, which the blood will help). He is still leaking a lot of fluid from his chest tube, though now the thought is that this fluid is coming from his belly. They are trying to turn down his morphine, but when he is awake, he is very clearly uncomfortable.
I don't know if it is fair to say he is worse, so much as unchanged, and no real "fix" is known, so we have to do a lot of waiting.
Needless to say, he isn't looking nearly as good as he had before we had these problems surface. We are frustrated at the waiting and lack of definite answers too.
If you are a friend or family member who has a lot of medical background knowledge (other heart families or doctor/nurse/etcs) we don't mind your medical questions because it isn't as hard to explain things to you. Explaining what is going on is really emotionally draining, so when we can be more specific, it's easier.
Otherwise, keep in mind that we have crummy reception and may just not be in the mood to talk when you call. Texting should always be your first choice. Also, please (I know it's hard) try not to ask questions about what the plan is or what is causing things. We are telling you all we know right here on the blog and having to say "we don't know" out loud over and over again makes us feel less hopeful about getting through each day or that progress will eventually be made.
I promise that we are updating the blog when we have information to share. We want to keep everyone informed, but there are a lot of days with no change or progress, and a lot of days where we don't have any answers so there isn't anything to share. We just need to focus on taking care of things here and keep our heads in the game.
Thank you so much for being so understanding. Hopefully this "flush" will work and we can feed him and he won't throw up. Hopefully getting blood will turn his vitals around and he can get back on track. Hopefully our next post will be good news and I won't sound so crabby. Regardless, we will have the information here as soon as it is feasible.
Likely, it is simply that he was dehydrated for a while after being diuresed and that he hasn't had any oral feedings combined with all the medicines he is getting that slow down his belly. All feedings have been through IV, so he hasn't really had much to make stool from so his smooth muscle tissue can pass it through his system.
The plan today is to give him a sort of intestinal "flush" to clear out some gas bubbles and get things moving a little bit. If he throws up like the other times, this will not work.
They've had to increase his ventilator support, he may need more blood given to him today, and his vitals are not looking as strong (namely NIRS and Sats, which the blood will help). He is still leaking a lot of fluid from his chest tube, though now the thought is that this fluid is coming from his belly. They are trying to turn down his morphine, but when he is awake, he is very clearly uncomfortable.
I don't know if it is fair to say he is worse, so much as unchanged, and no real "fix" is known, so we have to do a lot of waiting.
Needless to say, he isn't looking nearly as good as he had before we had these problems surface. We are frustrated at the waiting and lack of definite answers too.
If you are a friend or family member who has a lot of medical background knowledge (other heart families or doctor/nurse/etcs) we don't mind your medical questions because it isn't as hard to explain things to you. Explaining what is going on is really emotionally draining, so when we can be more specific, it's easier.
Otherwise, keep in mind that we have crummy reception and may just not be in the mood to talk when you call. Texting should always be your first choice. Also, please (I know it's hard) try not to ask questions about what the plan is or what is causing things. We are telling you all we know right here on the blog and having to say "we don't know" out loud over and over again makes us feel less hopeful about getting through each day or that progress will eventually be made.
I promise that we are updating the blog when we have information to share. We want to keep everyone informed, but there are a lot of days with no change or progress, and a lot of days where we don't have any answers so there isn't anything to share. We just need to focus on taking care of things here and keep our heads in the game.
Thank you so much for being so understanding. Hopefully this "flush" will work and we can feed him and he won't throw up. Hopefully getting blood will turn his vitals around and he can get back on track. Hopefully our next post will be good news and I won't sound so crabby. Regardless, we will have the information here as soon as it is feasible.
Tuesday, January 3, 2012
Almost...
Yesterday morning they had planned to take him off the respirator. We were really excited at the chance to hear his voice again. We haven't heard him since he was first born. It's been over 23 days since my son has been able to cry or coo.
However, Sunday night he started breathing harder even while on the machine for assistance. By Monday morning, all of the progress he made in getting off of the respirator was completely undone in an attempt to keep him stable. Turns out, his chest tube was clogged and he'd built up over 100ml of fluid that were causing pressure problems on his lungs. As soon as they took the fluid off, he started doing much better. They changed the type of drain on the tube to one that was less likely to clot.
Then we had to tackle the him not eating issue. Everytime they've attempted to start feeding him through an NG (through his nose into his stomach) tube, he throws up a few hours later. He hasn't had a bowel movement in over a week. So they tried some laxatives that hadn't worked yet. They decided to give him an oral laxative through his ng tube that is designed to loosen stool and get his system cleaned out. He did really well with the medicine for the first 6 hours, and then started throwing it all up.
X-rays haven't shown any air outside his digestive system and his intestines are making noises as if they are moving things. Some of the laxative they gave him orally did come out the other end, so some material can get through, but not clearing his intestines out regularly could be the big thing keeping him from eating.
He is likely constipated from several of the medications he was on (sedation meds can slow digestion) as well as all of the diuresing (where they remove excess fluid from the body by making him pee alot after surgery) - necessary things for him that could have clogged his bowels up in the process. It's possible that the cystic fibrosis has its ugly hand in this...but I really REALLY want to place the blame on everything else he's needed before I allow myself to believe that CF is already a problem. I want to deal with the heart stuff first and then the CF.
They have contacted the general surgery department here. Today he will have an enema done to see if he has a bowel obstruction (where stool gets hard and stuck in the intestines so other material can't get past). Once we have a better idea what we are dealing with, they'll come up with a plan to fix it and get him moving along. If it is an obstructed bowel it would be a surgical fix.
The other issue (what? there's more?!...yep) is that his chest tube is draining ALOT of fluid. He may have fluid reforming in his belly as well. This is becoming a bigger issue. This could just be because of trauma from his open heart surgery that hasn't healed yet. This could also be because a larger lymphatic drainage tube in his chest was damaged during surgery, and it could require a surgical fix as well.
It's good that we're dealing with these problems now while he has such a wonderful team caring for him here in St. Louis. I'm glad that he has doctors that are considering all factors including CF since I can't face the CF issue just yet.
It's hard to think that we were sooo close to getting to hear him again. I know we really weren't, we just didn't know about the other issues going on...but we keep trying to find little things to hope for, and then they get taken away.
I think my husband and I both have felt like we needed to protect others from what is going on. We needed to put on our brave faces and stay optimistic so we could explain things to friends and family in a way that made it sound like this was part of the process, we were holding up well, and everything was going to be fine.
The truth is that every day here is hell.
Every time we see him cry but can't hear it because of the tube - or he shows us how much pain he is in - or they sedate him again to the point that he won't even squeeze our fingers - or we hear them say that he is 3 weeks old, never fed, intubated basically his whole life - or they tell you your son may get cut on AGAIN...it is all we can do to swallow the sorrow and horror and hold his hand. Tell him this will help him. Tell him we love him and life will be better one day.
Everytime we talk to our daughter on the phone of video conferencing, we remind ourselves that she will forget that we were gone. That she is happy with family, and that even though I tear up everytime I see someone else with their daughter - this is to help our family.
And on a more selfish level - I am struggling to accept that we cannot have more children without risking that they will have CF too. I am struggling with knowing that I could very well have to look at leaving a job that I find fulfilling and that I love. I am struggling to think of how much my husband will have to be away from us to make up my salary. AND..some jerk in the elevator last week asked me when I was due...so my self esteem sucks.
Thank goodness for the social workers who come to make sure our basic needs are met and help us with anything they can. We are thankful for the doctors and the nurses who explain things to us and keep reminding us that this is a slow process. One more hold up. I'd be lost without my family. I will be forever grateful for my grandmother who has shown us so much generiousity and kindness. Matt's family who have helped with anything we've asked. Our friends who have visited, comforted, and donated their time to keeping us sane. And most of all - I am so thankful that I found a partner like my husband who I love so deeply and trust so completely that I know if I could ever make it through something like this, it's because he's at my side.
I have nightmares of rounding doctors diagnosing things and sticking more tubes in my son. I am terrified he will never leave.
The only thing that gets me through each day is an image in my head of Rowan and Evelyn playing in our backyard when Rowan is a toddler and Evelyn, his bossy big sister. An image of this all being behind us and the amount of joy we will find in little things with our family.
However, Sunday night he started breathing harder even while on the machine for assistance. By Monday morning, all of the progress he made in getting off of the respirator was completely undone in an attempt to keep him stable. Turns out, his chest tube was clogged and he'd built up over 100ml of fluid that were causing pressure problems on his lungs. As soon as they took the fluid off, he started doing much better. They changed the type of drain on the tube to one that was less likely to clot.
Then we had to tackle the him not eating issue. Everytime they've attempted to start feeding him through an NG (through his nose into his stomach) tube, he throws up a few hours later. He hasn't had a bowel movement in over a week. So they tried some laxatives that hadn't worked yet. They decided to give him an oral laxative through his ng tube that is designed to loosen stool and get his system cleaned out. He did really well with the medicine for the first 6 hours, and then started throwing it all up.
X-rays haven't shown any air outside his digestive system and his intestines are making noises as if they are moving things. Some of the laxative they gave him orally did come out the other end, so some material can get through, but not clearing his intestines out regularly could be the big thing keeping him from eating.
He is likely constipated from several of the medications he was on (sedation meds can slow digestion) as well as all of the diuresing (where they remove excess fluid from the body by making him pee alot after surgery) - necessary things for him that could have clogged his bowels up in the process. It's possible that the cystic fibrosis has its ugly hand in this...but I really REALLY want to place the blame on everything else he's needed before I allow myself to believe that CF is already a problem. I want to deal with the heart stuff first and then the CF.
They have contacted the general surgery department here. Today he will have an enema done to see if he has a bowel obstruction (where stool gets hard and stuck in the intestines so other material can't get past). Once we have a better idea what we are dealing with, they'll come up with a plan to fix it and get him moving along. If it is an obstructed bowel it would be a surgical fix.
The other issue (what? there's more?!...yep) is that his chest tube is draining ALOT of fluid. He may have fluid reforming in his belly as well. This is becoming a bigger issue. This could just be because of trauma from his open heart surgery that hasn't healed yet. This could also be because a larger lymphatic drainage tube in his chest was damaged during surgery, and it could require a surgical fix as well.
It's good that we're dealing with these problems now while he has such a wonderful team caring for him here in St. Louis. I'm glad that he has doctors that are considering all factors including CF since I can't face the CF issue just yet.
It's hard to think that we were sooo close to getting to hear him again. I know we really weren't, we just didn't know about the other issues going on...but we keep trying to find little things to hope for, and then they get taken away.
I think my husband and I both have felt like we needed to protect others from what is going on. We needed to put on our brave faces and stay optimistic so we could explain things to friends and family in a way that made it sound like this was part of the process, we were holding up well, and everything was going to be fine.
The truth is that every day here is hell.
Every time we see him cry but can't hear it because of the tube - or he shows us how much pain he is in - or they sedate him again to the point that he won't even squeeze our fingers - or we hear them say that he is 3 weeks old, never fed, intubated basically his whole life - or they tell you your son may get cut on AGAIN...it is all we can do to swallow the sorrow and horror and hold his hand. Tell him this will help him. Tell him we love him and life will be better one day.
Everytime we talk to our daughter on the phone of video conferencing, we remind ourselves that she will forget that we were gone. That she is happy with family, and that even though I tear up everytime I see someone else with their daughter - this is to help our family.
And on a more selfish level - I am struggling to accept that we cannot have more children without risking that they will have CF too. I am struggling with knowing that I could very well have to look at leaving a job that I find fulfilling and that I love. I am struggling to think of how much my husband will have to be away from us to make up my salary. AND..some jerk in the elevator last week asked me when I was due...so my self esteem sucks.
Thank goodness for the social workers who come to make sure our basic needs are met and help us with anything they can. We are thankful for the doctors and the nurses who explain things to us and keep reminding us that this is a slow process. One more hold up. I'd be lost without my family. I will be forever grateful for my grandmother who has shown us so much generiousity and kindness. Matt's family who have helped with anything we've asked. Our friends who have visited, comforted, and donated their time to keeping us sane. And most of all - I am so thankful that I found a partner like my husband who I love so deeply and trust so completely that I know if I could ever make it through something like this, it's because he's at my side.
I have nightmares of rounding doctors diagnosing things and sticking more tubes in my son. I am terrified he will never leave.
The only thing that gets me through each day is an image in my head of Rowan and Evelyn playing in our backyard when Rowan is a toddler and Evelyn, his bossy big sister. An image of this all being behind us and the amount of joy we will find in little things with our family.
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