Meds down.
Respirator down.
Diaper instead of catheter.
Awake, kicking, grasping.
Happy and snuggly in a blanket, sleeping.
A nice day of slow progress to end out 2011. The goals we still need to accomplish are getting him completely extubated, and teaching him to eat. These will take several days, but more days like this and I think we'll manage.
Happy New Year Rowan!
We're going to watch the fireworks over the arch from Rowan's room tonight.
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.
Saturday, December 31, 2011
Friday, December 30, 2011
Slow and bumpy (does contain medical jargon)
This post may be a little technical, but I will explain as I go. - Doc
The day after the chest tubes were removed, Rowan had some fluid build up in his right chest that required a pigtail catheter (smaller tube with a curly end) to drain it. This is not uncommon after a big surgery like his and this tube is much better than the big chest tubes comfort-wise. The fluid did make it harder for him to breathe while it was there but once it was gone things got much better very quickly. His tidal volumes had been decreasing (his lungs weren't able to expand as much) because of the fluid and this improved a lot with drainage. (They got 70 mL off when they did it.) The amount coming from this tube has gone down a lot, so it likely won't be needed much longer. Basically, two big tubes out, one little tube back in, and it will come out soon.
He also had a tube in his belly (PD catheter) after his surgery to drain fluid. This had not been draining much, but it was because it had gotten clogged up. This was the same time he was getting the fluid in his lungs and they unclogged it when they put the little chest tube in. This had not been draining much since then so it was actually removed today. One tube out, no replacement needed for now at least.
One of the main goals is getting him off the ventilator (breathing machine). Today, he is at room air, meaning the air in the machine is the same concentration as what is floating around instead of having more oxygen in it. He is on SIMV, which means he gets help with his breaths when he inhales and it will only breathe for him if he does not breathe enough on his own. He is initiating all his breaths right now, so he is making good progress.
Today will be his first shot at food that doesn't come in an IV. He will get a tiny amount through his NG tube (goes through his nose down into his stomach) and that will get increased slowly as he tolerates it.
We are getting some cabin fever, so we are trying to get away from the hospital a bit more. We got to eat dinner with friends that are now here in St. Louis and that was definitely helpful not to mention actually being fun. Thanks Javi and Jessica!
The day after the chest tubes were removed, Rowan had some fluid build up in his right chest that required a pigtail catheter (smaller tube with a curly end) to drain it. This is not uncommon after a big surgery like his and this tube is much better than the big chest tubes comfort-wise. The fluid did make it harder for him to breathe while it was there but once it was gone things got much better very quickly. His tidal volumes had been decreasing (his lungs weren't able to expand as much) because of the fluid and this improved a lot with drainage. (They got 70 mL off when they did it.) The amount coming from this tube has gone down a lot, so it likely won't be needed much longer. Basically, two big tubes out, one little tube back in, and it will come out soon.
He also had a tube in his belly (PD catheter) after his surgery to drain fluid. This had not been draining much, but it was because it had gotten clogged up. This was the same time he was getting the fluid in his lungs and they unclogged it when they put the little chest tube in. This had not been draining much since then so it was actually removed today. One tube out, no replacement needed for now at least.
One of the main goals is getting him off the ventilator (breathing machine). Today, he is at room air, meaning the air in the machine is the same concentration as what is floating around instead of having more oxygen in it. He is on SIMV, which means he gets help with his breaths when he inhales and it will only breathe for him if he does not breathe enough on his own. He is initiating all his breaths right now, so he is making good progress.
Today will be his first shot at food that doesn't come in an IV. He will get a tiny amount through his NG tube (goes through his nose down into his stomach) and that will get increased slowly as he tolerates it.
We are getting some cabin fever, so we are trying to get away from the hospital a bit more. We got to eat dinner with friends that are now here in St. Louis and that was definitely helpful not to mention actually being fun. Thanks Javi and Jessica!
Tuesday, December 27, 2011
Slow Progress
A week ago, we were told that there was a possibility that surgery wasn't an option for our son because of CF. We were told that we may have to look at putting our son on comfort measures instead. The worst 24 hours of my life were between finding out that CF and lung problems meant it was likely we were going to have to let our son go, and finding out that a hospital was accepting him. I am so thankful that this last week has gone very differently than we thought it would.
Saint Louis Children's took Rowan. He had his surgery the day after his arrival. He is doing well in recovery. I still can't shake the absolute "the world has ended" feeling I had last week completely - but I think it takes time to move past that extreme of an emotion.
Today, they took out the chest tubes (tubes that are inserted to drain fluid off of the chest after surgery). These tubes are supposed to be pretty uncomfortable, so I'm glad to see fewer things in my son. They also took him off several medications and are beginning to wean him off the ventilator.
It could still be several days before he is extubated and we can hold him, but I don't mind waiting. Every day we still have him is a gift we didn't think we'd have.
The hardest thing right now is that we can tell that he is in pain sometimes. Watching a baby cry while intubated is heartwrenching. They are keeping him comfortable without keeping him too sleepy to breathe on his own. It's hard not to be able to hold him and tell him it'll all be a bad memory, but I can hold his hand. And he can squeeze it back. Little victories.
Saint Louis Children's took Rowan. He had his surgery the day after his arrival. He is doing well in recovery. I still can't shake the absolute "the world has ended" feeling I had last week completely - but I think it takes time to move past that extreme of an emotion.
Today, they took out the chest tubes (tubes that are inserted to drain fluid off of the chest after surgery). These tubes are supposed to be pretty uncomfortable, so I'm glad to see fewer things in my son. They also took him off several medications and are beginning to wean him off the ventilator.
It could still be several days before he is extubated and we can hold him, but I don't mind waiting. Every day we still have him is a gift we didn't think we'd have.
The hardest thing right now is that we can tell that he is in pain sometimes. Watching a baby cry while intubated is heartwrenching. They are keeping him comfortable without keeping him too sleepy to breathe on his own. It's hard not to be able to hold him and tell him it'll all be a bad memory, but I can hold his hand. And he can squeeze it back. Little victories.
Monday, December 26, 2011
Continuing to Recover Well
Right now I am sitting the parent waiting area while the surgeon and surgical team are in Rowan's ICU room. The rooms convert into operating rooms, so they don't have to wheel him down to the OR when they close his chest.
They leave their rib cages open and the incision location open as well post-op to allow for swelling. Now that Rowan's kidneys are doing well and he has reduced his swelling substancially, they are closing up his ribcage and sewing him shut.
After this, they'll let him adjust and monitor him for a while and then start working towards getting him off the respirator, significantly lowering his sedatives, getting his digestive system to function (for the first time ever), and letting him move towards being fully recovered. These things will all take a few days.
Yesterday, we had breakfast provided by a group called Heart2Heart. They had several "heart kids" ranging from ages 11-26 who are doing wonderful. The 26 year old is training for a half marathon right now. It was nice to see so many success stories and a reminder that it will not be like this forever.
We found an IHOP that was open to eat at, Skyped with my family to see Evelyn and let her open some of our presents for us and show us her favorite new toys, and managed to get a pretty good night's rest. It didn't really feel like Christmas yesterday. To be honest, any sacrifice, even missing Christmas, is NOTHING at all when your little boy is still here. Not all of the families in the CICU have been so lucky. Our little boy is still here. Our daughter is blissfully content with her extended family, and my husband and I are together. We couldn't ask for anything else.
They leave their rib cages open and the incision location open as well post-op to allow for swelling. Now that Rowan's kidneys are doing well and he has reduced his swelling substancially, they are closing up his ribcage and sewing him shut.
After this, they'll let him adjust and monitor him for a while and then start working towards getting him off the respirator, significantly lowering his sedatives, getting his digestive system to function (for the first time ever), and letting him move towards being fully recovered. These things will all take a few days.
Yesterday, we had breakfast provided by a group called Heart2Heart. They had several "heart kids" ranging from ages 11-26 who are doing wonderful. The 26 year old is training for a half marathon right now. It was nice to see so many success stories and a reminder that it will not be like this forever.
We found an IHOP that was open to eat at, Skyped with my family to see Evelyn and let her open some of our presents for us and show us her favorite new toys, and managed to get a pretty good night's rest. It didn't really feel like Christmas yesterday. To be honest, any sacrifice, even missing Christmas, is NOTHING at all when your little boy is still here. Not all of the families in the CICU have been so lucky. Our little boy is still here. Our daughter is blissfully content with her extended family, and my husband and I are together. We couldn't ask for anything else.
Saturday, December 24, 2011
In Recovery - Hoping for Boring
Rowan's surgery went well. He is in stable condition. He has several new tubes, but fewer medications. He is still on the respirator and will be for a while. He is sedated by not paralyzed. He is a little puffy, but not as bad as we expected based on how many people warned us what he might look like. His rib cage and incision are still "open" but covered with sterile material to prevent infection. The surgeon is planning on closing him on Monday after he has had time for swelling to go down a little.
As far as recovery goes, the surgeon told us that he expects Rowan to be in the CICU (Cardiac Intensive Care Unit) for 7-10 days. Then he expects Rowan to be in a transitional floor for 7-10 days. Then he expects Rowan to go home. We like that idea. A possibility of 2 weeks until we go home doesn't seem bad at all when we thought it would be at least a month. We will be happy to stay longer if he needs it, but it would be nice to half the time we thought to be away from our daughter.
Waiting for him during surgery was not nearly as bad as I thought it would be. One things that was nice is we went down to the surgery floor with him, so it wasn't like they took him away from us - we just parted ways as he headed to the OR and we headed to the waiting room.
In the waiting room, we busied ourselves with books and Netflix to pass the time. I even snuck in a nap. The hardest thing was how late it ended up running. We met with the surgeon a little after midnight and made it back to see Rowan around 2:00AM. We're still pretty tired today, but relaxing in his room with him while he works on recoving. Same old game of hurry up and wait.
As far as recovery goes, the surgeon told us that he expects Rowan to be in the CICU (Cardiac Intensive Care Unit) for 7-10 days. Then he expects Rowan to be in a transitional floor for 7-10 days. Then he expects Rowan to go home. We like that idea. A possibility of 2 weeks until we go home doesn't seem bad at all when we thought it would be at least a month. We will be happy to stay longer if he needs it, but it would be nice to half the time we thought to be away from our daughter.
Waiting for him during surgery was not nearly as bad as I thought it would be. One things that was nice is we went down to the surgery floor with him, so it wasn't like they took him away from us - we just parted ways as he headed to the OR and we headed to the waiting room.
In the waiting room, we busied ourselves with books and Netflix to pass the time. I even snuck in a nap. The hardest thing was how late it ended up running. We met with the surgeon a little after midnight and made it back to see Rowan around 2:00AM. We're still pretty tired today, but relaxing in his room with him while he works on recoving. Same old game of hurry up and wait.
Friday, December 23, 2011
And He's Off
What a horrible day to have technical difficulties. Blogger keeps deleting my posts.
Long story short - this is the 3rd time I've typed this, so it's the abridged version.
Surgeon talked with us. We feel that we made a really good choice in transferring. He does 20-24 Norwood procedures a year.
Rowan's Plan for Surgery Today:
Step 1: Repair Incomplete Aortic Arch http://www.pted.org/?id=interruptedarch1 (this site explains that well)
Step 2: Make sure he hole between the right and left ventricles has good flow.
Step 3: Norwood procedure (google it)
The nurse will update us each hour. Rowan could be in surgery fro 5-7 hours or even more. The surgeon will meet with us at the end of the surgery to tell us how it went. We should be able to see him an hour after that meeting.
We trust our little wolf to fight fiercely and continue to show everyone how strong he is. We trust the medical team. We trust that we made the decisions to give him his best chance. This is just another step.
Long story short - this is the 3rd time I've typed this, so it's the abridged version.
Surgeon talked with us. We feel that we made a really good choice in transferring. He does 20-24 Norwood procedures a year.
Rowan's Plan for Surgery Today:
Step 1: Repair Incomplete Aortic Arch http://www.pted.org/?id=interruptedarch1 (this site explains that well)
Step 2: Make sure he hole between the right and left ventricles has good flow.
Step 3: Norwood procedure (google it)
The nurse will update us each hour. Rowan could be in surgery fro 5-7 hours or even more. The surgeon will meet with us at the end of the surgery to tell us how it went. We should be able to see him an hour after that meeting.
We trust our little wolf to fight fiercely and continue to show everyone how strong he is. We trust the medical team. We trust that we made the decisions to give him his best chance. This is just another step.
Meet Me in St. Louis
Rowan is doing fantastic. He is stable, had no problems with his transport whatsoever, and has been upgraded to a larger bed.
We arrived in St. Louis around 7 last night and went straight to St. Louis Children's Hospital to see him. Let me say, that Saint Francis Children's Hospital in Tulsa is an amazing facility. It looks like a Science Center more than a hospital and is pretty impressive. That said, SLCH makes it look like we went from a pond to the ocean. I don't think I've ever been in a hospital this large.
The staff here have been great. They are very confident and kind when we ask questions and have been taking excellent care of Rowan.
After we said hi to Rowan and met with his nurse, we went to Haven House, where we are staying, to check in.
Haven House is a nonprofit service for families with ANY family member in the hospital that live more than a 25 mile radius away. We have our own room (which can sleep up to 4) and bathroom. The House provides breakfast and dinner as well as a gym and internet room. It costs $30 a night and is about 20 minutes away from the hospital but is located near lots of different retail stores so if we need anything it won't be far away. We slept there last night to make sure we were really well rested for meeting with the Doctors today.
Rowan's admitting physician called us last night to tell us that the care Rowan received in Tulsa was really good. They are continuing on with the plan they had for Rowan in Tulsa and have changed very few of his medications. They are focusing on reducing any swelling he still has before surgery.
There is a chance that he will have surgery today. He is the second case on the boards, but the 1st case today is pretty complicated (read: takes a long time) and so is Rowan's, so if they do not finish the first case by early afternoon, Rowan will wait until Monday.
Our daughter is doing wonderfully with my parents. The rest of my family is driving in to Tulsa today and we are planning on trying to Skype with them all Christmas morning so we can watch our daughter open her presents and say hi to everyone.
Thank you for all of your kind thoughts and support. We are so grateful for all that everyone has done to help us out. It has certainly been a humbling two weeks, but we are so thankful that we have loved ones to turn to.
We will update with information about surgery again later today.
We arrived in St. Louis around 7 last night and went straight to St. Louis Children's Hospital to see him. Let me say, that Saint Francis Children's Hospital in Tulsa is an amazing facility. It looks like a Science Center more than a hospital and is pretty impressive. That said, SLCH makes it look like we went from a pond to the ocean. I don't think I've ever been in a hospital this large.
The staff here have been great. They are very confident and kind when we ask questions and have been taking excellent care of Rowan.
After we said hi to Rowan and met with his nurse, we went to Haven House, where we are staying, to check in.
Haven House is a nonprofit service for families with ANY family member in the hospital that live more than a 25 mile radius away. We have our own room (which can sleep up to 4) and bathroom. The House provides breakfast and dinner as well as a gym and internet room. It costs $30 a night and is about 20 minutes away from the hospital but is located near lots of different retail stores so if we need anything it won't be far away. We slept there last night to make sure we were really well rested for meeting with the Doctors today.
Rowan's admitting physician called us last night to tell us that the care Rowan received in Tulsa was really good. They are continuing on with the plan they had for Rowan in Tulsa and have changed very few of his medications. They are focusing on reducing any swelling he still has before surgery.
There is a chance that he will have surgery today. He is the second case on the boards, but the 1st case today is pretty complicated (read: takes a long time) and so is Rowan's, so if they do not finish the first case by early afternoon, Rowan will wait until Monday.
Our daughter is doing wonderfully with my parents. The rest of my family is driving in to Tulsa today and we are planning on trying to Skype with them all Christmas morning so we can watch our daughter open her presents and say hi to everyone.
Thank you for all of your kind thoughts and support. We are so grateful for all that everyone has done to help us out. It has certainly been a humbling two weeks, but we are so thankful that we have loved ones to turn to.
We will update with information about surgery again later today.
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