Little A is going in to her surgeon today at Rush and they will do a upper endoscopy of her "esophagus" to see what needs to be done for her EA/TEF thus far. We discussed balloon treatment for her scar tissue area that seems to always shrink inward ever so slowly. This blocks her food from swallowing well and just causes a lot of problems. They will go in and balloon that section out some and then maybe check the rest of her throat area to see if she has any bone build up. Now, I'm not sure if this is calcium build up or something else. During the surgical procedure when they made her "esophagus" they cut the area around her collar bone and chest. Her collar bone is free from the chest bone. Her chest bone is also cut down a little on the left side. It's kind of shaped like the top of a triangle, upside down. The point is facing the heart. The wider section is up by her throat. This enables them to fix the "esophagus" easier! It can just be a little strange to see her collar bone sticking out of her neck area when she's got a full "throat" if food is stuck. One of the tell tale signs of "we need to massage her neck" !
We will be learing around 1PM to take her to Rush. E gets in just after 1 PM from school, an early dismissal today due to All Day Testing. ACT stuff and other things. School is so confusing now! Anyway, E will come home and rest. He was up very early to be at the school by 7:30 AM and after testing all day long you know that is going to be a 'worn out' moment! He will be home, but his Uncle D will be here too, so he won't be completely alone. I know he's old enough to be here alone. I know he won't do stupid things, but I still have a better ease about myself when there are people I know around my kids!
I'm hoping Little A will come home tonight and there will be no overnight stay. I'm packing, just in case, for an overnight. I am not going to enjoy that very much! Oh yes, it will be a total Disney girl's night out or something. Egh! I'm not much of a "new" Disney mom. I sort of shy away from things like that. Pre-Teen, Tween, whatever they are called shows like um, see, I'm lost on titles I actually have to think about it. My daughter watches them and loves them and, hey, it's better than some reality show stuff, buuuuut....boy oh boy can it be crazy!
I need to get back to making sure I have everything in my bag. I will be sure to update everything about Little A, and the adventure to Rush, when we get back fully!
Showing posts with label Little A. Show all posts
Showing posts with label Little A. Show all posts
Thursday, September 23, 2010
Sunday, September 19, 2010
Surgery Coming Part 3: Little A's Roller Coaster
The only problem with children is they grow. Sometimes quickly. Little A is now 8 years old. Her homemade esophagus is a roller coaster inside her body. Where we see a normal esophagus under x-ray with ourselves her esophagus looks like the mine ride in Indiana Jones and the Temple of Doom, minus the big gap part they had to jump! (That video is just...crazy...I laughed at the coin sounds..) She also has stricture problems, sometimes, because she does not chew food properly when she is extremely hungry. Which lately is all the time. (Watches her eating chicken nuggets and shakes her head with a grin.) So, problems occur.
A stricture happens when the scar tissue where her homemade esophagus is attached at the throat, and somewhere down by her tummy, grow inward and make the holes too narrow to get food through properly. She has several areas that can show stricture. The throat, the stomach, and down in the colon. So far the throat has been the one that has had the most trouble. We even massage that area so that food pops! through the hole if it gets stuck. Weird, but hey, you get used to it. I can even feel out the spot to help navigate the food for her. That...sounds odd, but it works for us until we can see her doctor.
This week her Surgeon (a new surgeon since Dr. Bass moved on and we gained her replacement) Dr. Mark Holterman is going to go in for a look-see. He just wants to extend her neck area again with one of these because the scar tissue has narrowed: partay balloons in Little A's throat! but he also wants to check out that roller coaster ride of a esophagus and see what, or if something, needs done. Like a pull. The pull would mean that they yank out all the excess "esophagus" (colon) that has grown over the years to make it decently straight for her to have a direct line from mouth to stomach. If he feels it is necessary to do a pull he will call from the O.R. and let us know while she is under.
A pull at this age is a short term relief. In about six years she will need another pull done. That colon piece will be growing as she grows, and in it's natural state, like a colon. If a pull is done now, she will have a few years to go and another surgery will be necessary. We can only do this one appointment at a time. One month at a time. Things could change at any time. It can be an unbearable and heavy weight on you if you contemplate it too much or too often, though. I get happy for normal, crazy days. The alternative to those sucks!
Here we come Thursday. You better be ready for us!
A stricture happens when the scar tissue where her homemade esophagus is attached at the throat, and somewhere down by her tummy, grow inward and make the holes too narrow to get food through properly. She has several areas that can show stricture. The throat, the stomach, and down in the colon. So far the throat has been the one that has had the most trouble. We even massage that area so that food pops! through the hole if it gets stuck. Weird, but hey, you get used to it. I can even feel out the spot to help navigate the food for her. That...sounds odd, but it works for us until we can see her doctor.
This week her Surgeon (a new surgeon since Dr. Bass moved on and we gained her replacement) Dr. Mark Holterman is going to go in for a look-see. He just wants to extend her neck area again with one of these because the scar tissue has narrowed: partay balloons in Little A's throat! but he also wants to check out that roller coaster ride of a esophagus and see what, or if something, needs done. Like a pull. The pull would mean that they yank out all the excess "esophagus" (colon) that has grown over the years to make it decently straight for her to have a direct line from mouth to stomach. If he feels it is necessary to do a pull he will call from the O.R. and let us know while she is under.
A pull at this age is a short term relief. In about six years she will need another pull done. That colon piece will be growing as she grows, and in it's natural state, like a colon. If a pull is done now, she will have a few years to go and another surgery will be necessary. We can only do this one appointment at a time. One month at a time. Things could change at any time. It can be an unbearable and heavy weight on you if you contemplate it too much or too often, though. I get happy for normal, crazy days. The alternative to those sucks!
Here we come Thursday. You better be ready for us!
Surgery Coming Part 2: Little A Grows
So Little A was born. She was given a G-tube to eat with, a tube was shoved down her nose and out the hole in her neck they created so she did not choke on her own spit. It was called (I think) a cervical esophagostomy, but short term is Spit Fistula. It was a messy sucker, too. It was right at the base of her neck around her collar bone area on her left side. Because it was messy we were taught how to use pediatric colostomy bags from a company named Hollister to cover them. Here is a picture of one of the bags and it's adhesive pad: bag of hell.
To put the bag on her, we had to hold her still, (Yeah, try that with a wiggling infant!) her neck had to be at a certain angle, it had to be clean of spit and or other liquids, it had to be smoothed out for the adhesive strip to fit properly. When we finally did get it on her (properly..) we had to watch it so it would not fill up with air and pop! There is a cork like tip on it that can drain the liquid (spit) and air if done properly. Sometimes we had good days. Sometimes we had terrible one's. But we made sure she kept that tube up her poor little nose. (Yes, sometimes she took it out. I put it right back in. The things we learn for our children.) We made sure she had love and comfort. Her G-Tube was cared for...even when it came out!!! Gosh, what a time all that was!
They finally did the main surgery on her once she became older and gained more weight. They did a colon interposition for the esophagus. I remember Dr. Bass drawing a picture for E when she spoke about it. She did a diagram on the paper they use to cover the examination tables to show him how they would take a piece of her colon and form it into her esophagus. I was amazed by the process. There were many opportunities to correct the esophageal atresia, but this method seemed wise for our daughter because of how big the gap was from her stomach to her mouth.
She no longer had the spit fistula. She eventually crawled and knocked out the damn G-tube. I never put it back in. I just picked it up off the rug, glared at it, covered her tummy with gauze and tape while I called the Nurse, told her what happened, and that was that. No more G-tube. We tell Little A she's so special she has two belly buttons!
To put the bag on her, we had to hold her still, (Yeah, try that with a wiggling infant!) her neck had to be at a certain angle, it had to be clean of spit and or other liquids, it had to be smoothed out for the adhesive strip to fit properly. When we finally did get it on her (properly..) we had to watch it so it would not fill up with air and pop! There is a cork like tip on it that can drain the liquid (spit) and air if done properly. Sometimes we had good days. Sometimes we had terrible one's. But we made sure she kept that tube up her poor little nose. (Yes, sometimes she took it out. I put it right back in. The things we learn for our children.) We made sure she had love and comfort. Her G-Tube was cared for...even when it came out!!! Gosh, what a time all that was!
They finally did the main surgery on her once she became older and gained more weight. They did a colon interposition for the esophagus. I remember Dr. Bass drawing a picture for E when she spoke about it. She did a diagram on the paper they use to cover the examination tables to show him how they would take a piece of her colon and form it into her esophagus. I was amazed by the process. There were many opportunities to correct the esophageal atresia, but this method seemed wise for our daughter because of how big the gap was from her stomach to her mouth.
She no longer had the spit fistula. She eventually crawled and knocked out the damn G-tube. I never put it back in. I just picked it up off the rug, glared at it, covered her tummy with gauze and tape while I called the Nurse, told her what happened, and that was that. No more G-tube. We tell Little A she's so special she has two belly buttons!
Surgery Coming Part 1: Little A History
I use the word surgery but my husband does not use that word. I guess he would prefer the word procedure or something? My view of this is this: My daughter will be under anesthesia. She will have instruments watching over her vitals while under anesthesia. They will be inserting instruments into her body to view her and observe her and inspect her. To me, that is surgery. Asleep and things inside the body = surgery! I guess if blood is not involved my husband thinks it's not surgery? That makes me grin a little. It's all based on....opinion. Oh that is the other "O" word. Opinion!
Back to the surgery. We will get a phone call from Rush Medical Center in Chicago on Wednesday. They tell us what time to report to the Hospital on Thursday. I do not know why they do it this way, but hey, arguing with that system will put you in the Hospital. On Thursday we report to Rush on time and register through that slow desk system of theirs. They are always slow at that location. I wish a new system could be implemented. For the past 8 years we have had to use them for one thing or another and that one spot is like a sleepy snail.
I can't go into the idea behind what they are going to do without telling her history first. Or at least a brief blip of it. Naw, I'll just do the whole thing. So here we go:
Little A was born on the end of July in 2002. She was part of the 9/11 baby boom that came around, in my opinion, and is my second born, but B's first. During a typical ultrasound (her first, actually) we discovered she did not have a visible stomach on the monitor. The operator actually paused, went back, paused again, and then moved out of the room to get someone else who came back into the room. I was so worried. I know my blood pressure was already high...I can't imagine what it was at that point, but bang! zoom! comes to mind.
The other technician could not find her stomach. Hearing the words "We can't find her stomach" (or something thereof) made me freak out on the inside. I didn't know what to say or do other than wonder, what does that mean? She explained no liquid could be seen to see the stomach. That had many meanings and we were sent to specialists in Chicago. When I got home I did what I always do. Look stuff up! I used search engines and started looking at what it means to have no stomach visible and so on. I am a "I need to know this stuff" person. I prepare myself that way. I think B went to lay down and think. He does his thing. I do mine. It works!
The specialist had me on a table for so long the pressure was unbelievable. He mentioned a "sack" and a "nub" and this and that and then finally said the words "esophageal atresia with a slight fistula"...say what?
Simply put, Little A was born without an esophagus and had a small hole between what was there of her esophagus and her trachea. Here is a diagram showing her type: EA/TEF . Little A is a Type C on a chart that shows many types of this birth defect. It is called the most common form of this defect, but considering how rare any of the types are, I think it is anything but common!
B was with me and Little A (yes, still inside me but she was there so she is mentioned) the entire time we had to do something. We had to go and have her monitored twice a week at Rush (the gas money and trying to pay rent etc..is how our debt started to come back but we had to do it for the baby girl..). We saw our Specialist often.
Our baby girl would be born without a way to swallow and if she did, the liquid would go into her lungs. The mind can really, really work around all of that with imagination and worry and everything....
...that's probably why we started to drive around often. Driving away in the car. Traveling to other places. It gave us something to do. It distracted us. It helped us. (It got me Dairy Queen vanilla cones...the best cheap craving...) Our own kind of therapy. That was much cheaper than paying a therapist!
Then we met Dr. Bass and everything shifted into a better place. At the time, Dr. Bass worked at Rush and saw us about once every month along the way to make sure everything was going smoothly. She made sure we understood the proceedures ahead of us. She made sure we understood what would happen when Little A was born. They had to immediately get her prepared for being out of the womb. They had to make sure she could eat (G-tube), and so on. It was a lot of preparation with months to make sure it was just right for us and for Little A.
She told me if I could carry Little A full term it would be the ultimate prize. From what Dr. Bass explained, a baby with this type of birth defect was hard to carry full term due to amniotic fluid build up and toxins that produced (not to mention weight and pressure...). The only thing I remember hearing was "full term is an excellent start for the baby". Then damn it, full term it would be. My stubborn mom side kicked in. I would carry her as long as possible. I promised Little A one night, mentally speaking to her, that, no matter what came, she had a safe place to grow and be ready for what she would be dealing with.
Even with the summer heat (wow...hot does not describe that summer. I did thank plumbers everywhere for cold water showers...), even with toxins in my system, even with the fluid sloshing about inside me (we called me Little A's indoor swimming pool). Oh, the fluid could be removed, they told us, with needles inserted in the womb through my stomach. Much like they would do with amniotic fluid tests. "It would give you some relief". Um, hello? You want to stick a needle like that through my tummy and into the womb where my baby is happily splashing about? No. Way. I will remain a walking swimming pool.
With all of what I dealt with physically I still held her for a full term. I was so proud of myself afterward, but I was extremely proud of B. Without his help and his support and just him being who he is....it would have been hell to deal with alone. He kept me going. He's my hero.
Back to the surgery. We will get a phone call from Rush Medical Center in Chicago on Wednesday. They tell us what time to report to the Hospital on Thursday. I do not know why they do it this way, but hey, arguing with that system will put you in the Hospital. On Thursday we report to Rush on time and register through that slow desk system of theirs. They are always slow at that location. I wish a new system could be implemented. For the past 8 years we have had to use them for one thing or another and that one spot is like a sleepy snail.
I can't go into the idea behind what they are going to do without telling her history first. Or at least a brief blip of it. Naw, I'll just do the whole thing. So here we go:
Little A was born on the end of July in 2002. She was part of the 9/11 baby boom that came around, in my opinion, and is my second born, but B's first. During a typical ultrasound (her first, actually) we discovered she did not have a visible stomach on the monitor. The operator actually paused, went back, paused again, and then moved out of the room to get someone else who came back into the room. I was so worried. I know my blood pressure was already high...I can't imagine what it was at that point, but bang! zoom! comes to mind.
The other technician could not find her stomach. Hearing the words "We can't find her stomach" (or something thereof) made me freak out on the inside. I didn't know what to say or do other than wonder, what does that mean? She explained no liquid could be seen to see the stomach. That had many meanings and we were sent to specialists in Chicago. When I got home I did what I always do. Look stuff up! I used search engines and started looking at what it means to have no stomach visible and so on. I am a "I need to know this stuff" person. I prepare myself that way. I think B went to lay down and think. He does his thing. I do mine. It works!
The specialist had me on a table for so long the pressure was unbelievable. He mentioned a "sack" and a "nub" and this and that and then finally said the words "esophageal atresia with a slight fistula"...say what?
Simply put, Little A was born without an esophagus and had a small hole between what was there of her esophagus and her trachea. Here is a diagram showing her type: EA/TEF . Little A is a Type C on a chart that shows many types of this birth defect. It is called the most common form of this defect, but considering how rare any of the types are, I think it is anything but common!
B was with me and Little A (yes, still inside me but she was there so she is mentioned) the entire time we had to do something. We had to go and have her monitored twice a week at Rush (the gas money and trying to pay rent etc..is how our debt started to come back but we had to do it for the baby girl..). We saw our Specialist often.
Our baby girl would be born without a way to swallow and if she did, the liquid would go into her lungs. The mind can really, really work around all of that with imagination and worry and everything....
...that's probably why we started to drive around often. Driving away in the car. Traveling to other places. It gave us something to do. It distracted us. It helped us. (It got me Dairy Queen vanilla cones...the best cheap craving...) Our own kind of therapy. That was much cheaper than paying a therapist!
Then we met Dr. Bass and everything shifted into a better place. At the time, Dr. Bass worked at Rush and saw us about once every month along the way to make sure everything was going smoothly. She made sure we understood the proceedures ahead of us. She made sure we understood what would happen when Little A was born. They had to immediately get her prepared for being out of the womb. They had to make sure she could eat (G-tube), and so on. It was a lot of preparation with months to make sure it was just right for us and for Little A.
She told me if I could carry Little A full term it would be the ultimate prize. From what Dr. Bass explained, a baby with this type of birth defect was hard to carry full term due to amniotic fluid build up and toxins that produced (not to mention weight and pressure...). The only thing I remember hearing was "full term is an excellent start for the baby". Then damn it, full term it would be. My stubborn mom side kicked in. I would carry her as long as possible. I promised Little A one night, mentally speaking to her, that, no matter what came, she had a safe place to grow and be ready for what she would be dealing with.
Even with the summer heat (wow...hot does not describe that summer. I did thank plumbers everywhere for cold water showers...), even with toxins in my system, even with the fluid sloshing about inside me (we called me Little A's indoor swimming pool). Oh, the fluid could be removed, they told us, with needles inserted in the womb through my stomach. Much like they would do with amniotic fluid tests. "It would give you some relief". Um, hello? You want to stick a needle like that through my tummy and into the womb where my baby is happily splashing about? No. Way. I will remain a walking swimming pool.
With all of what I dealt with physically I still held her for a full term. I was so proud of myself afterward, but I was extremely proud of B. Without his help and his support and just him being who he is....it would have been hell to deal with alone. He kept me going. He's my hero.
Subscribe to:
Posts (Atom)