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!
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.
Friday, January 20, 2012
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.
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