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
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.
Thursday, January 12, 2012
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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