He's out and stable. The surgeon just came out and said everything went well. Nathan did great during surgery. He is going to go to the SICU soon.
I don't know much, just that he is OK and his trach is gone. I should know more tomorrow.
Thanks for all the prayers all day, they worked!
Family Vacation
Thursday, August 25, 2011
Update 4
We just got another update. It's still going to be a little while. The doctor is hoping to be done around 8. The problem with that is the surgery waiting area closes at 6:30 - we have gotten our last update from the liason. So at 7 we are going to go up to the SICU (surgical ICU) and wait for Nathan to arrive. We will talk with the doctor once Nathan is moved up there. Hopefully it isn't long after 8. I'll update again when I can.
Thanks for thinking of us. Your texts, facebook messages and all your support have meant a lot to us. Matt and I both really appreciate it.
Thanks for thinking of us. Your texts, facebook messages and all your support have meant a lot to us. Matt and I both really appreciate it.
Update 3
Nathan is still in the OR. We just got an update and the liason said when she spoke with the doctor he told her that Nathan is stable but it's still going to be a while. When the liason asked him for an estimate on how much longer he told her he couldn't give one, it was going to be a while longer.
More waiting... this is getting boring. And we keep seeing families come and go and we just wait... I just want to see my boy and see that he is OK.
More waiting... this is getting boring. And we keep seeing families come and go and we just wait... I just want to see my boy and see that he is OK.
Update 2
Nathan was finally taken into the OR around 11:30, only an hour late isn't really all that bad. I was able to go right into the OR with him and hold him while he was put under anesthesia. He was given gas that made him go right to sleep.
After that Matt and I went and checked in with the liason and then went to lunch. We got back from the cafeteria and the liason came and found us, the general surgeon was coming to talk to us. When he came out he said they had "hit a little speedbump" and were unable to place an IV. Neither Matt or I were suprised by that, he's a really hard stick. So they just needed us to sign a consent for a central line. That was around 12:30, so in the next hour we should start getting updates each hour.
Now we just wait.
After that Matt and I went and checked in with the liason and then went to lunch. We got back from the cafeteria and the liason came and found us, the general surgeon was coming to talk to us. When he came out he said they had "hit a little speedbump" and were unable to place an IV. Neither Matt or I were suprised by that, he's a really hard stick. So they just needed us to sign a consent for a central line. That was around 12:30, so in the next hour we should start getting updates each hour.
Now we just wait.
Update 1
I meant to update yesterday but wasn't able to figure out how to update from my phone and we didn't have internet at the hotel. Nathan is doing great, he keeps saying he wants to go home though. He hasn't seemed nervous at all, but we aren't doing anything yet. We are at the hospital and waiting to go to the pre-op clinic. We have to be there by 9 for a 10:30 surgery time. Hopefully that doesn't get pushed back but we are now operating on doctor time and that's never the same as regular people time.
I'll update again once he actually goes into the OR. I am going to go into the OR with him, it makes it less scary for him if a parent goes. So I will go in and be with him until he goes to sleep.
Say a prayer for us, we sure can use them today.
I'll update again once he actually goes into the OR. I am going to go into the OR with him, it makes it less scary for him if a parent goes. So I will go in and be with him until he goes to sleep.
Say a prayer for us, we sure can use them today.
Friday, August 19, 2011
All About Surgery
I've had a few questions lately about what exactly Nathan's surgery will entail and that made me realize that most people have no idea how big of a surgery this is. So I figured I would explain what his surgery is going to be and reasons why it might not work. That might help all of you understand why Matt and I aren't always as optimistic about the outcome of surgery. Before I can do that you need to understand why he has the trach, so bear with me this could be a long one.
Why He Has The Trach
During the surgery to repair his esophagus the surgeon was dangerously close to the nerve that controls your vocal cords. We didn't know it going in but a big risk of esophageal surgery is vocal cord nerve damage, Nathan had worst case scenario. The nerve that controls his vocal cords was shut, paralyzing his vocal cords in the closed position.
When we breathe our vocal cords open and allow air into our lungs. Then whenever we swallow our vocal cords close and protect our airway so the food goes into our stomach rather than our lungs. Nathan's vocal cords are closed and prohibit him from breathing from above his vocal cords. His trach (as all are) is below his vocal cords so that he can breathe.
Surgery Info
Nathan will first be put under general anesthesia. Then a few different IV lines will be placed, a PICC line and a regular IV. He will need more than one IV site because it's a big surgery and there is a HUGE risk of bleeding, so he will more than likely need blood during surgery. They can use one IV for blood and another IV for other things. Putting the IV in will take a while, he's a very hard stick after all the IV's he had in his life.
Once the IV is in the actual surgery will begin. First a general surgeon (hopefully his pediatric surgeon Dr.B) will take rib cartilage out. Then the ORL doctor will use the rib cartilage and place it between his vocal cords. The rib cartilage will be used to "prop open" his vocal cords. Opening the vocal cords will give him a wider airway and allow him to breathe without the trach, hopefully.
Once the vocal cords are opened the ORL doctor will close his trach site. That means closing the opening they created in his trach and closing the stoma on the outside. This will leave him with just a little scar on the front of his neck that eventually we would never see. Who has ever see Catherine Zeta-Jones former trach scar?
I know it doesn't sound like much but keep in mind that this will be our little 3 year old boy's 14th surgery - in 3 years. Each time he has surgery he develops more and more scar tissue and that has effectively turned his abdomen into concrete (his surgeon's exact words), the scar tissue is tough to get through and remove. It makes surgery more difficult and makes everything take longer.
Once Nathan is out of surgery he will be taken to the ICU for at least a week. While he's in the ICU he will be heavily sedated, probably medically paralyzed, for at least the first week. He is scheduled to go back to the OR on September 1st for a trial extubation. At that time the ORL doctor will use a camera and look down his throat at the surgical site, as long as it looks like it's healing they will trial an extubation.
Possible Complications
Inability to Breathe - the ORL doctor said that some kids who had been trached for a while just panic once they are expected to breathe without the trach. Nathan has been trached since he was 4 months old, he's lived virtually all of his life with the trach so this is a very real possibility. Nathan has never reacted well to change, or when he's expected to do new things. He used to throw up at the mere sight of his physical therapist. He's not great with new things so hopefully he does OK with his "new" breathing.
Bleeding - while the general surgeon is operating he will be open for a while. That means there will be a lot of bleeding, it could be too much. This is nothing new for Nathan, it wouldn't be his first transfusion and I'm sure it wouldn't be his last. Then once ORL takes over they are operating VERY close to a major vein in his neck that runs right behind his trachea. Ever since he was trached there has been the risk of his trach "rubbing" through his trachea and opening up that vein causing a major bleed - that risk is still there during surgery while the surgeons are in there manipulating things. This is the one that really scares me. This one means there is a very real risk Nathan wouldn't make it out of surgery. I'm living in denial about it and I prefer to stay there.
Protecting his airway - Once Nathan has been extubated and has proven that he can breathe on his own it turns to safety. His vocal cords will not move at all, they won't be able to protect his airway. He is going to have to compensate for that with his swallow technique. He will need to be able to swallow safely for this surgery to be called a success. The first hurdle is his own saliva, if Nathan can't even swallowing his saliva safely this surgery is a complete failure. When I say "swallow safely" that means swallowing without anything going into his lungs, if something does go into his lungs that is called aspiration. He can't aspirate - that's how people get pneumonia. If he can handle his saliva we will move onto actual eating. The hope is that Nathan will be able to swallow safely, even thin liquids. The thinner the liquid is the harder it is to swallow, especially without vocal cords. If he can handle thicker liquids that is just fine with us, he will just be on thickened liquids for a while. If he can't even handle his saliva he will need to be re-trached. It will simply be safer for him to have a trach than live with constant aspiration. A re-trach surgery will mean at least 2 additional weeks in the hospital, and a devestated mommy.
Being a kid - Nathan hasn't breathed without his trach since he was 4 months old, at that time he was immobile and didn't do anything. Nathan has no idea how to run, jump and play and breathe effectively. He will need to prove to the doctors that he can hold his oxygen saturation while being a kid. This will be done in the weeks after he is extubated. He will be on a monitor that will monitor his oxygen level while he is doing things.
Going Home
Nathan needs to be able to breathe on his own to go home.
Nathan needs to be able to safely swallow at least his saliva to go home.
Nathan needs to be able to hold his oxygen saturation to go home.
It doesn't sound like a lot but it is. There are HUGE goals for him, goals Matt and I have had since we first heard that Nathan needed to trach, when he was 4 months old.
When Nathan first got the trach it was devestating to us. It completley changed the course of all our lives, we were suddenly the parents of a child with chronic medical needs. We were a family who depended on Apria (HATE THEM) to keep Nathan safe with his medical equipment. We were a family who couldn't go on vacation without first sending a few boxes full of equipment. We want to be a family who can travel without medical stuff. We want to be a family who doesn't have to live with the constant worry that comes with chronic medical needs. We want Nathan to have as normal a life as possible, and for us that means no trach.
We are hopeful that the surgery will work but aren't counting on it. Read over those possible complications and understand why Matt and I aren't "putting all our eggs in one basket" We want to be realistic, we want to be prepared. Nathan has never had surgery without a complication. We are just expecting the complication that comes with this surgery to be one that causes the trach to go back in.
Why He Has The Trach
During the surgery to repair his esophagus the surgeon was dangerously close to the nerve that controls your vocal cords. We didn't know it going in but a big risk of esophageal surgery is vocal cord nerve damage, Nathan had worst case scenario. The nerve that controls his vocal cords was shut, paralyzing his vocal cords in the closed position.
When we breathe our vocal cords open and allow air into our lungs. Then whenever we swallow our vocal cords close and protect our airway so the food goes into our stomach rather than our lungs. Nathan's vocal cords are closed and prohibit him from breathing from above his vocal cords. His trach (as all are) is below his vocal cords so that he can breathe.
Surgery Info
Nathan will first be put under general anesthesia. Then a few different IV lines will be placed, a PICC line and a regular IV. He will need more than one IV site because it's a big surgery and there is a HUGE risk of bleeding, so he will more than likely need blood during surgery. They can use one IV for blood and another IV for other things. Putting the IV in will take a while, he's a very hard stick after all the IV's he had in his life.
Once the IV is in the actual surgery will begin. First a general surgeon (hopefully his pediatric surgeon Dr.B) will take rib cartilage out. Then the ORL doctor will use the rib cartilage and place it between his vocal cords. The rib cartilage will be used to "prop open" his vocal cords. Opening the vocal cords will give him a wider airway and allow him to breathe without the trach, hopefully.
Once the vocal cords are opened the ORL doctor will close his trach site. That means closing the opening they created in his trach and closing the stoma on the outside. This will leave him with just a little scar on the front of his neck that eventually we would never see. Who has ever see Catherine Zeta-Jones former trach scar?
I know it doesn't sound like much but keep in mind that this will be our little 3 year old boy's 14th surgery - in 3 years. Each time he has surgery he develops more and more scar tissue and that has effectively turned his abdomen into concrete (his surgeon's exact words), the scar tissue is tough to get through and remove. It makes surgery more difficult and makes everything take longer.
Once Nathan is out of surgery he will be taken to the ICU for at least a week. While he's in the ICU he will be heavily sedated, probably medically paralyzed, for at least the first week. He is scheduled to go back to the OR on September 1st for a trial extubation. At that time the ORL doctor will use a camera and look down his throat at the surgical site, as long as it looks like it's healing they will trial an extubation.
Possible Complications
Inability to Breathe - the ORL doctor said that some kids who had been trached for a while just panic once they are expected to breathe without the trach. Nathan has been trached since he was 4 months old, he's lived virtually all of his life with the trach so this is a very real possibility. Nathan has never reacted well to change, or when he's expected to do new things. He used to throw up at the mere sight of his physical therapist. He's not great with new things so hopefully he does OK with his "new" breathing.
Bleeding - while the general surgeon is operating he will be open for a while. That means there will be a lot of bleeding, it could be too much. This is nothing new for Nathan, it wouldn't be his first transfusion and I'm sure it wouldn't be his last. Then once ORL takes over they are operating VERY close to a major vein in his neck that runs right behind his trachea. Ever since he was trached there has been the risk of his trach "rubbing" through his trachea and opening up that vein causing a major bleed - that risk is still there during surgery while the surgeons are in there manipulating things. This is the one that really scares me. This one means there is a very real risk Nathan wouldn't make it out of surgery. I'm living in denial about it and I prefer to stay there.
Protecting his airway - Once Nathan has been extubated and has proven that he can breathe on his own it turns to safety. His vocal cords will not move at all, they won't be able to protect his airway. He is going to have to compensate for that with his swallow technique. He will need to be able to swallow safely for this surgery to be called a success. The first hurdle is his own saliva, if Nathan can't even swallowing his saliva safely this surgery is a complete failure. When I say "swallow safely" that means swallowing without anything going into his lungs, if something does go into his lungs that is called aspiration. He can't aspirate - that's how people get pneumonia. If he can handle his saliva we will move onto actual eating. The hope is that Nathan will be able to swallow safely, even thin liquids. The thinner the liquid is the harder it is to swallow, especially without vocal cords. If he can handle thicker liquids that is just fine with us, he will just be on thickened liquids for a while. If he can't even handle his saliva he will need to be re-trached. It will simply be safer for him to have a trach than live with constant aspiration. A re-trach surgery will mean at least 2 additional weeks in the hospital, and a devestated mommy.
Being a kid - Nathan hasn't breathed without his trach since he was 4 months old, at that time he was immobile and didn't do anything. Nathan has no idea how to run, jump and play and breathe effectively. He will need to prove to the doctors that he can hold his oxygen saturation while being a kid. This will be done in the weeks after he is extubated. He will be on a monitor that will monitor his oxygen level while he is doing things.
Going Home
Nathan needs to be able to breathe on his own to go home.
Nathan needs to be able to safely swallow at least his saliva to go home.
Nathan needs to be able to hold his oxygen saturation to go home.
It doesn't sound like a lot but it is. There are HUGE goals for him, goals Matt and I have had since we first heard that Nathan needed to trach, when he was 4 months old.
When Nathan first got the trach it was devestating to us. It completley changed the course of all our lives, we were suddenly the parents of a child with chronic medical needs. We were a family who depended on Apria (HATE THEM) to keep Nathan safe with his medical equipment. We were a family who couldn't go on vacation without first sending a few boxes full of equipment. We want to be a family who can travel without medical stuff. We want to be a family who doesn't have to live with the constant worry that comes with chronic medical needs. We want Nathan to have as normal a life as possible, and for us that means no trach.
We are hopeful that the surgery will work but aren't counting on it. Read over those possible complications and understand why Matt and I aren't "putting all our eggs in one basket" We want to be realistic, we want to be prepared. Nathan has never had surgery without a complication. We are just expecting the complication that comes with this surgery to be one that causes the trach to go back in.
Sunday, August 14, 2011
Suprised
We have spent the last two days at my Aunt and Uncles house on Crooked Lake. Nathan loves to go out there to see all our california cousins and go fishing with Aunt Susie. This year while they were visiting my cousin had a lot of his friends visiting as well. They are all in their early 20's, not married with no kids. I didn't think they would be at all interested in the boys and sort of assumed the boys would be an annoyance to them - I remember being that age.
So we got to the lake and were introduced to the people we didn't know (we had met some of them before) and then Nathan wanted to go fishing. Trevor however wanted to stay on the deck and eat, he does love to eat. Trevor and Nathan both had a great time and warmed up to all the new people quickly. I was also very suprised at how all the other people there were with the boys - they were all amazing.
At one point Nathan decided he wanted to play baseball with the other "big boys" so I asked my cousin if he would mind letting Nathan have a turn (they were plaiyng a real game and I didn't want Nathan to be in the way) but he didn't mind. They gave nathan the bat and let him have a turn. He hit the ball and then ran all the bases, all while the others were throwing it around "trying" to get him out. He had a great time running and got a home run (imagine how suprised I was). The whole way home, the part he was awake for, he talked about how he ran fast and won!
Then today we went back to the lake and everyone was again great with the boys. They included them in what they were doing and Trevor loved all the attention. I was just suprised that a group of young adults would be so good with the kids. It was very nice to see Nathan have so much fun with everyone. He was so sad when we had to leave, but Trevor's fever is back so we needed to get him home at a reasonable time.
I got a call today from the Cape Cod hospial, Trevor has a UTI, that is why his fever is so high. I am going to call the pediatrician tomorrow and get a prescription for an antibiotic. Hopefully that will help him feel better for good. He is starting to get sick again. His fever retunred today and he was cranky all day. I'm ready for him to be healthy again.
So we got to the lake and were introduced to the people we didn't know (we had met some of them before) and then Nathan wanted to go fishing. Trevor however wanted to stay on the deck and eat, he does love to eat. Trevor and Nathan both had a great time and warmed up to all the new people quickly. I was also very suprised at how all the other people there were with the boys - they were all amazing.
At one point Nathan decided he wanted to play baseball with the other "big boys" so I asked my cousin if he would mind letting Nathan have a turn (they were plaiyng a real game and I didn't want Nathan to be in the way) but he didn't mind. They gave nathan the bat and let him have a turn. He hit the ball and then ran all the bases, all while the others were throwing it around "trying" to get him out. He had a great time running and got a home run (imagine how suprised I was). The whole way home, the part he was awake for, he talked about how he ran fast and won!
Then today we went back to the lake and everyone was again great with the boys. They included them in what they were doing and Trevor loved all the attention. I was just suprised that a group of young adults would be so good with the kids. It was very nice to see Nathan have so much fun with everyone. He was so sad when we had to leave, but Trevor's fever is back so we needed to get him home at a reasonable time.
I got a call today from the Cape Cod hospial, Trevor has a UTI, that is why his fever is so high. I am going to call the pediatrician tomorrow and get a prescription for an antibiotic. Hopefully that will help him feel better for good. He is starting to get sick again. His fever retunred today and he was cranky all day. I'm ready for him to be healthy again.
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