We finally got rid of the colds (or URTI's - upper respiratory tract infections. Somewhere along the line I have started talking in acronyms)
We are waiting for our general surgeon to get back from holidays and give us a surgery date....how dare he have a life!
There is sunshine.
There are dimples.
There are zoos.
Life is beautiful.
And hopefully in a few weeks there will be substantially less vomit.
Showing posts with label Kaylee's journey. Show all posts
Showing posts with label Kaylee's journey. Show all posts
Thursday, May 10, 2012
Friday, April 27, 2012
Why It's Rude to Stare
I sat in the foyer with my children waiting for Jon to talk the young girl at the counter into letting us in for free even though we left our membership card at home. The kids prattled excitedly about the exhibits we were going to see in the science museum and the snacks I had packed in our bag.
A little girl, about six maybe, ran up to the pram and peered in to see the baby.
Her jaw dropped and her eyes almost bulged as she stared at the tube coming out of Kaylee's nose.
I could see this yellow tube and the white tape fixing it in place had all but eclipsed the pink cheeks, long lashes, dark hair and pink bow in her mind - she didn't notice the baby, just the tube.
Her eyes oogled at the small bundle wrapped in the pink blanket against the cold of the blustery, wet autumn day. She followed the tube to it's source, the purple pump and the bottle hanging upside down.
There was no question asked, no comment .... just staring.
After many minutes she was called away by her family who were leaving the museum and turned, without a word. Not even acknowledging the existence of the family and the baby behind the tube.
Later that afternoon a little boy, perhaps four, looked in the pram. He looked at me and asked what the matter was with her nose. I knelt down and explained that Kaylee was born a bit sick and can't eat with her mouth so she has a very special way to get her food through this tube right down into her tummy.
"Uhhuh" he said
then ran away to play on the interactive exhibit with the other kids.
And that is why I teach my children not to stare.
A little girl, about six maybe, ran up to the pram and peered in to see the baby.
Her jaw dropped and her eyes almost bulged as she stared at the tube coming out of Kaylee's nose.
I could see this yellow tube and the white tape fixing it in place had all but eclipsed the pink cheeks, long lashes, dark hair and pink bow in her mind - she didn't notice the baby, just the tube.
Her eyes oogled at the small bundle wrapped in the pink blanket against the cold of the blustery, wet autumn day. She followed the tube to it's source, the purple pump and the bottle hanging upside down.
There was no question asked, no comment .... just staring.
After many minutes she was called away by her family who were leaving the museum and turned, without a word. Not even acknowledging the existence of the family and the baby behind the tube.
Later that afternoon a little boy, perhaps four, looked in the pram. He looked at me and asked what the matter was with her nose. I knelt down and explained that Kaylee was born a bit sick and can't eat with her mouth so she has a very special way to get her food through this tube right down into her tummy.
"Uhhuh" he said
then ran away to play on the interactive exhibit with the other kids.
And that is why I teach my children not to stare.
Thursday, April 19, 2012
The techie stuff and frequently asked questions
What is a fundoplication and why does Kaylee need it?
In the context of Kaylee, a fundoplication is a surgery to prevent reflux. The valve where Kaylee's stomach and oesophagus join does not work very well.. Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't. This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery. The first is that her reflux is extreme. The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit). Vomit in the lungs is not great. It effectively starts digesting the lungs. A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet. In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc. Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being. The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome. Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux. Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all. Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.). Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.
The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus. This closes up the opening somewhat and prevents reflux. Kaylee should be able to have food in her stomach without fear of aspirating. She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally". It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.
What is a gastronomy and why does Kaylee need it?
All her life Kaylee has been fed using a feeding tube of some sort. Currently she is fed via an NJ tube. I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems. And it is a pretty long list actually. Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc. Kaylee is unlikely to start feeding orally in the very near future. Not enough to sustain her anyway. There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her. So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into. It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly. It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air. While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes. Without a tube, Kaylee would not survive. A tummy tube has the fewest negatives and the most positives. We are getting the tummy tube. A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.
When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule. We are thinking a couple of weeks at this stage
What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area. While I have no desire whatsoever to move permanently away from Tassie, it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment. Staying here with our friends has also been a time of rest and healing for us. Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders. Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality. We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one. We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries. The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals. Home really is where the herd is!
In the context of Kaylee, a fundoplication is a surgery to prevent reflux. The valve where Kaylee's stomach and oesophagus join does not work very well.. Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't. This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery. The first is that her reflux is extreme. The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit). Vomit in the lungs is not great. It effectively starts digesting the lungs. A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet. In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc. Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being. The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome. Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux. Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all. Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.). Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.
The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus. This closes up the opening somewhat and prevents reflux. Kaylee should be able to have food in her stomach without fear of aspirating. She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally". It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.
What is a gastronomy and why does Kaylee need it?
All her life Kaylee has been fed using a feeding tube of some sort. Currently she is fed via an NJ tube. I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems. And it is a pretty long list actually. Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc. Kaylee is unlikely to start feeding orally in the very near future. Not enough to sustain her anyway. There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her. So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into. It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly. It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air. While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes. Without a tube, Kaylee would not survive. A tummy tube has the fewest negatives and the most positives. We are getting the tummy tube. A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.
When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule. We are thinking a couple of weeks at this stage
What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area. While I have no desire whatsoever to move permanently away from Tassie, it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment. Staying here with our friends has also been a time of rest and healing for us. Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders. Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality. We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one. We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries. The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals. Home really is where the herd is!
Friday, March 23, 2012
A tale of tubes and tanties
There are two basic feeding tubes that go through the nose.
One is an NG tube which passes through the nose into the stomach. This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason. Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go. It is not that hard to do and a "lay person" can be trained to do this at home.
The other tube is an NJ tube. This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine. It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ. This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place. Do not try this at home kids.
Kaylee has the second of these two tubes.
This is not a fact that I relish.
I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door. In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.
Because that's what us parents do.
We advocate for our kids.
But Kaylee needs this NJ tube. I am convinced beyond a shadow of a doubt and believe me I took some convincing. I was a very hard sell. They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day. They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray. There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid. They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively. They had to work hard to convince me that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.
The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out. The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs. And research and experience shows that Kaylee's reflux is only going to get worse.
So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.
Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth. We will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball. It will mean no more NJ.
This is our next step.
And I am very ready to take it.
We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn. So we are going home to wait and come back to Melbourne and do this thing. And I will not be sad to say goodbye to our NJ.
One is an NG tube which passes through the nose into the stomach. This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason. Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go. It is not that hard to do and a "lay person" can be trained to do this at home.
The other tube is an NJ tube. This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine. It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ. This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place. Do not try this at home kids.
Kaylee has the second of these two tubes.
This is not a fact that I relish.
I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door. In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.
Because that's what us parents do.
We advocate for our kids.
But Kaylee needs this NJ tube. I am convinced beyond a shadow of a doubt and believe me I took some convincing. I was a very hard sell. They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day. They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray. There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid. They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively. They had to work hard to convince me that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.
The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out. The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs. And research and experience shows that Kaylee's reflux is only going to get worse.
So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.
Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth. We will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball. It will mean no more NJ.
This is our next step.
And I am very ready to take it.
We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn. So we are going home to wait and come back to Melbourne and do this thing. And I will not be sad to say goodbye to our NJ.
Monday, March 19, 2012
Update and why I keep a nature journal
I am sorry for not keeping everyone better up to date but no news has been largely good news.
Kaylee's heart op has been a resounding success. Her artery is a wee bit leaky and a wee bit narrow still but that is to be expected and we just watch it until she has another surgery somewhere down the line - possibly not until she reaches puberty.
All the specialists, nurses and random staff members involved deserve sloppy kisses and big fat gold stars and Kaylee herself deserves a galaxy of gold stars and gets lots of big kisses. We have dodged every bullet and the only complication has been an easily managed urinary tract infection.
Now we are over that first big scary hurdle it is time to focus on what's next.
Formulating a plan of how to do that involves numerous specialists, departments and the negotiation skills of an UN mediator. Anyone who feels they are being left out of the loop where Kaylee is concerned, rest assured, there is no loop. There is currently a great big blob with me sitting in the middle of it closing my eyes and praying to have the strength NOT to beat a gastroenterologist with a haggis until he sees things from my perspective.
Kaylee's feeding needs sorting, a plan for her gastro stuff needs formulating, a timeline which takes into account the fact that her cleft needs fixing needs making and a plan for future cardio assessments needs reviewing. This could take one day, one week or one month. Welcome to the world of special needs parenting.
In the middle of all this I am trying to carve out time to sit by the window and write in my nature journal.
My nature journal is a random collection of bird identifications, cloud descriptions, pondering on the weather and ruminations on the picnic-ing habits of the staff and families here at the hospital. There is the odd very amateur sketch or feather sticky taped in. Much of it would not make sense to anyone else.
Why bother with this when there is so much else taking up my time?
Because of the answer God gave Job.
When Job asked that universal question of "Why?" God replied with a long description of the wonders of creation. If you stayed only with a surface reading of this book, you could be forgiven for thinking that God dodged the question. But the truth is, God recognised the true question within that "Why?
There is no answer to the "why?" question which will satisfy us in this lifetime. Nothing will make it OK. The true question within each of us - the question that bursts from us louder and clearer when we are stopped still by trauma - is: "Are You bigger than this?"
Are You bigger than this pain? Are You stronger than this disaster? Can I trust You to make this OK? Even this?
And written in the love letter of creation is a very clear message:
I am Huge.
And written in the Word is another:
I love you.
And if you put these two together.....
it makes tomorrow not so scary.
We are having fun with cuddles, trips to the zoo and a million different good things and I am working hard to get a plan to deal with the not-so-good things. Kaylee is doing beautifully.
And when I am tempted to yell at specialists or stress about that which is yet to happen, I grab my pencil and write about clouds. And for a moment or two, remember that God is Huge, and He loves me.
Kaylee's heart op has been a resounding success. Her artery is a wee bit leaky and a wee bit narrow still but that is to be expected and we just watch it until she has another surgery somewhere down the line - possibly not until she reaches puberty.
All the specialists, nurses and random staff members involved deserve sloppy kisses and big fat gold stars and Kaylee herself deserves a galaxy of gold stars and gets lots of big kisses. We have dodged every bullet and the only complication has been an easily managed urinary tract infection.
Now we are over that first big scary hurdle it is time to focus on what's next.
Formulating a plan of how to do that involves numerous specialists, departments and the negotiation skills of an UN mediator. Anyone who feels they are being left out of the loop where Kaylee is concerned, rest assured, there is no loop. There is currently a great big blob with me sitting in the middle of it closing my eyes and praying to have the strength NOT to beat a gastroenterologist with a haggis until he sees things from my perspective.
Kaylee's feeding needs sorting, a plan for her gastro stuff needs formulating, a timeline which takes into account the fact that her cleft needs fixing needs making and a plan for future cardio assessments needs reviewing. This could take one day, one week or one month. Welcome to the world of special needs parenting.
In the middle of all this I am trying to carve out time to sit by the window and write in my nature journal.
My nature journal is a random collection of bird identifications, cloud descriptions, pondering on the weather and ruminations on the picnic-ing habits of the staff and families here at the hospital. There is the odd very amateur sketch or feather sticky taped in. Much of it would not make sense to anyone else.
Why bother with this when there is so much else taking up my time?
Because of the answer God gave Job.
When Job asked that universal question of "Why?" God replied with a long description of the wonders of creation. If you stayed only with a surface reading of this book, you could be forgiven for thinking that God dodged the question. But the truth is, God recognised the true question within that "Why?
There is no answer to the "why?" question which will satisfy us in this lifetime. Nothing will make it OK. The true question within each of us - the question that bursts from us louder and clearer when we are stopped still by trauma - is: "Are You bigger than this?"
Are You bigger than this pain? Are You stronger than this disaster? Can I trust You to make this OK? Even this?
And written in the love letter of creation is a very clear message:
I am Huge.
And written in the Word is another:
I love you.
And if you put these two together.....
it makes tomorrow not so scary.
We are having fun with cuddles, trips to the zoo and a million different good things and I am working hard to get a plan to deal with the not-so-good things. Kaylee is doing beautifully.
And when I am tempted to yell at specialists or stress about that which is yet to happen, I grab my pencil and write about clouds. And for a moment or two, remember that God is Huge, and He loves me.
Wednesday, March 14, 2012
Breath, then do the next thing
Miss Kaylee Grace is breathing room air.
No prongs, not dots, no nuffin!
Our old foe reflux is ramping up now that Kaylee is getting all her food through her tube and the tummy doctors are getting involved. There are rumblings in that area and I will share what the plan is once we have something more definite.
I have been writing in my nature journal and watching the birds and parklands out the window of Kaylee's room. It is an indulgence that is doing me good. Somehow writing down the names of clouds, birds and trees and stretching my writer's muscles in a different direction gives a bit of balance to my mind.
Kaylee is not happy today with reflux and tummy pain. I am hoping the tummy doctors can make a good plan for my girl.
No prongs, not dots, no nuffin!
Our old foe reflux is ramping up now that Kaylee is getting all her food through her tube and the tummy doctors are getting involved. There are rumblings in that area and I will share what the plan is once we have something more definite.
I have been writing in my nature journal and watching the birds and parklands out the window of Kaylee's room. It is an indulgence that is doing me good. Somehow writing down the names of clouds, birds and trees and stretching my writer's muscles in a different direction gives a bit of balance to my mind.
Kaylee is not happy today with reflux and tummy pain. I am hoping the tummy doctors can make a good plan for my girl.
Wednesday, March 07, 2012
Count Down
We are on the count down now. We have everything organised for tomorrow morning and barring crisis Kaylee will be in surgery by mid-morning. Pre-admission is not terribly fun. Lots of blood tests, poking and prodding. I am not a huge fan of CT scans. Beforehand we had to try three times to get a line in then I had to preserve the line for an hour and a half by trying to get her to not wriggle her foot, which was taped up and strapped down but her little toes kept wriggling. Then we had to hold her down flat while she was put into a beanbag thing and sucked the air out of it to hold her still (lying flat+Kaylee=reflux). Then they inject a radioactive substance into her vein and wear lead vests while the big scanning machine she is in takes pictures of the radioactive stuff moving through her heart. All the while knowing that if at any point anything mucks up the pictures she has to have a general anaesthetic (with all the inherent risks) to get the pictures. And that is just a simple test to prepare for the big stuff!
In every hallway I am seeing someone I know. Every second nurse who I see is someone I have spent many hours watching over my baby with. Having my older kids here is a balm for my soul and we are loving being together. There are playgrounds, fish, sculptures, TVs and computer games to experience. Having Jon here is like a drink of cold water on a hot day. The first time I went in to the hospital I came across one of our old room mates. Dempsey is a few weeks younger than Kaylee and she is from interstate too. She just had a similar surgery and came through with flying colours - going home less than two weeks post-op. This morning we went to the zoo as a family and checked out the monkeys and the butterflies.
As always this is a curious mixture of hard, frightening, miserable, beautiful, wonderful and amazing.
In every hallway I am seeing someone I know. Every second nurse who I see is someone I have spent many hours watching over my baby with. Having my older kids here is a balm for my soul and we are loving being together. There are playgrounds, fish, sculptures, TVs and computer games to experience. Having Jon here is like a drink of cold water on a hot day. The first time I went in to the hospital I came across one of our old room mates. Dempsey is a few weeks younger than Kaylee and she is from interstate too. She just had a similar surgery and came through with flying colours - going home less than two weeks post-op. This morning we went to the zoo as a family and checked out the monkeys and the butterflies.
As always this is a curious mixture of hard, frightening, miserable, beautiful, wonderful and amazing.
Sunday, February 26, 2012
But she doesn't look disabled...
I've heard it a few times, people telling me that Kaylee does not look like anything is wrong- other than the tube. But as she gets older it is likely to become rarer that people say it. It will become harder to miss.
I remember talking to another Heart Kids Mum whose son has been in and out of hospitals his entire life and declared inoperable more than once. She has fought hard to keep him alive, happy and comfortable; getting second opinions when she was told that all hope was lost, chasing nurses to make sure he had his meds exactly on time, finding babysitters for her other sons and dropping them off before getting him to the hospital just in time for him to crash. She said to me that in some ways, it's not so bad. When things are going bad they are awful - but when things are good it is all normal. She told me that she thought having a child with "one of those syndromes" would be so much harder because every day you have to deal with the syndrome and all it entails. You never get normal.
I've thought a lot about her words and I have come to the conclusion that it is pointless to compare monsters. Those whose needs are visible fight pity, condescension and rejection. Those whose needs are hidden face misunderstanding, judgement and disbelief. And all of us grab the positives and hold them tight, not wanting to imagine life without them.
It has been many years since I have looked at a child in a public place and judged them and their parents. I never was one for the "My child will never....." speech and now that my kids have done pretty much everything I pretty much just shut up about it. I am even less inclined to pass judgement after hanging with the "special needs" crowd for a bit. The child having a melt down who looks like a spoiled brat could be dealing with a sensory system that completely flips out, could be exhausted and at the end of their tether after their sibling disappeared into hospital for two months, could be trying to cope with a world whose social cues are baffling and incomprehensible to them or could be in an extraordinary amount of pain and discomfort for large portions of the day, undergoing painful and debilitating treatments to keep them alive. We. Just. Don't. Know. Because so many special needs look....normal.
I have spent most of my life living with and/or loving people with chronic illness or pain. People who LOOK fine, who can even function "normally" most of the time, then without warning be vomiting and weak or bedridden with debilitating pain. At first people are concerned but then, after days, weeks, months or years, sly comments start to be made about hypochondria, being a "sook", just "getting on with it". Even, and sometimes especially, doctors and nurses hold these attitudes. Because they don't look sick they face judgement at a time they most need help and understanding.
Growing up my report cards continually had 'lazy' on them. 'Does not try', 'needs to be more motivated', 'does not listen', 'will not complete set tasks'. The strange thing is I am actually a workaholic. My personality gives me a tendency to become obsessive. When set on a goal I find it hard to unplug and will work at it with every fibre of my being - to the exclusion of eating, sleeping and basic personal hygiene if I let myself. I have to bribe myself to take a break. Looking back now I see a girl who struggled to decode and remember instructions. I would have them in my head and then five minutes later they would be gone - much to my frustration. I remember saying to teachers and other adults in my life "Can you please write that down to help me remember?" and they would prickle under the increased work load and refuse. And somewhere between them telling me and me sitting
down I would forget. And I started to believe them when they said it was because I was lazy, vague and did not try. I remember cluttered worksheets blending together in a swirl as I tried to find a handle I could use to understand numbers - then giving up and retreating to my world of books and words which made infinitely more sense to me. Looking back now I see a kid with mild dyscalcula and possible auditory processing issues.
I manage it now. Because I have worked hard to understand these issues I now know how to make my brain take detours around those parts that don't work well so I can function in the "real world". I research things myself until I understand them thoroughly because I usually don't retain what people tell me. It is like my brain mis-files it somewhere between my short term and long term memory. I ALWAYS have something to write in while I am talking to people in the hospital and those I work with regularly have learned just to give it to me in print wherever possible. I cover a lot of my little quirks. Most of my friends think I'm being funny when I take something said in jest literally - most of the time I will click a couple of hours later that they were speaking figuratively but in the conversation I instinctively cover my slips with cracks and jokes and witty comments and sometimes I just say weird stuff, the conversation gets a little awkward then we all move on and pretend it didn't happen. This is probably why
I would not class myself as having special needs because I function reasonably well in the world without others having to accommodate my needs now. I'm not actually special, I'm just quirky. But I remember the frustration of wanting to understand and fit in, trying to get the adults in my life to help me to succeed and finally accepting and applying to myself the label "lazy".
Take that, times it by a million, double it and times it by ten and move the decimal point eight places and you have a tiny speck of what I imagine those with special needs that aren't visibly identifiable to the average person face daily. People whose struggles with autism are belittled because they "look so normal". People whose illnesses or differences are written of as laziness or hypochondria.
Kaylee's diagnosis was made within a week of her birth. Many people take months if not years to get a label they can write on forms. Months and years of dealing with a sick child with no idea of what is coming next. Months and years of wondering if this is something which will dramatically reduce their child's life expectancy. Months and years of battling with doctors and red-tape-makers who think they are just being "over-dramatic" because there is no nice, neat diagnosis that attracts funding, support groups and research.
The visability factor doesn't make things easy by any means, the struggles are markedly different but they are still there. Wherever we go we stand out. I can't take my kid to the shop without people reacting in some way to Kaylee's tube. Most of the time (because she is all cute baby and chub) people are polite and curious. As they notice her tube and hear our story some people are horrified, shocked or awash with pity. There are days when I do wish that they only thing they would notice is her eye lashes and her hair. As much as I love teaching people about my girl and kids with special needs - there are days I would like a day off from being "special needs ambassador" to just be Mum, Dad and Kids hanging out together. But we are still at the approachable end of visible special needs. We are approachable, non-intimidating. She is cute. If she had a few less fingers or limbs, if her scars were on her face or head instead of hidden under her shirt, if she compulsively waved her arms in front of her face, if she was at the age people expected her to talk, walk and use a toilet and she didn't. Who would want to know her story, who would want to know her?
I generally do not try and read Kaylee's story before it is written but in all likelihood she will look different. In all likelihood she will act different. I will do my darndest to change the world before she gets into it. To change it to a world that does not judge people who do not talk as having nothing to say. To change it to a world that does not judge those who think slower, think different, as having no worthwhile thought. To change it to a world where people do not look at the weak, the broken and the less able and feel afraid. To change it to a world where people are valued and needs accommodated. Because they are NEEDS not seeking favouritism or creating inconvenience.
But if, by some strange chance, I do not change this world. If I do not roll out a red carpet of love and acceptance for her to walk in this world. I know that whether she looks different, or just is different, this world is a hard place to live in.
So please....change the world with me.
I remember talking to another Heart Kids Mum whose son has been in and out of hospitals his entire life and declared inoperable more than once. She has fought hard to keep him alive, happy and comfortable; getting second opinions when she was told that all hope was lost, chasing nurses to make sure he had his meds exactly on time, finding babysitters for her other sons and dropping them off before getting him to the hospital just in time for him to crash. She said to me that in some ways, it's not so bad. When things are going bad they are awful - but when things are good it is all normal. She told me that she thought having a child with "one of those syndromes" would be so much harder because every day you have to deal with the syndrome and all it entails. You never get normal.
I've thought a lot about her words and I have come to the conclusion that it is pointless to compare monsters. Those whose needs are visible fight pity, condescension and rejection. Those whose needs are hidden face misunderstanding, judgement and disbelief. And all of us grab the positives and hold them tight, not wanting to imagine life without them.
It has been many years since I have looked at a child in a public place and judged them and their parents. I never was one for the "My child will never....." speech and now that my kids have done pretty much everything I pretty much just shut up about it. I am even less inclined to pass judgement after hanging with the "special needs" crowd for a bit. The child having a melt down who looks like a spoiled brat could be dealing with a sensory system that completely flips out, could be exhausted and at the end of their tether after their sibling disappeared into hospital for two months, could be trying to cope with a world whose social cues are baffling and incomprehensible to them or could be in an extraordinary amount of pain and discomfort for large portions of the day, undergoing painful and debilitating treatments to keep them alive. We. Just. Don't. Know. Because so many special needs look....normal.
I have spent most of my life living with and/or loving people with chronic illness or pain. People who LOOK fine, who can even function "normally" most of the time, then without warning be vomiting and weak or bedridden with debilitating pain. At first people are concerned but then, after days, weeks, months or years, sly comments start to be made about hypochondria, being a "sook", just "getting on with it". Even, and sometimes especially, doctors and nurses hold these attitudes. Because they don't look sick they face judgement at a time they most need help and understanding.
Growing up my report cards continually had 'lazy' on them. 'Does not try', 'needs to be more motivated', 'does not listen', 'will not complete set tasks'. The strange thing is I am actually a workaholic. My personality gives me a tendency to become obsessive. When set on a goal I find it hard to unplug and will work at it with every fibre of my being - to the exclusion of eating, sleeping and basic personal hygiene if I let myself. I have to bribe myself to take a break. Looking back now I see a girl who struggled to decode and remember instructions. I would have them in my head and then five minutes later they would be gone - much to my frustration. I remember saying to teachers and other adults in my life "Can you please write that down to help me remember?" and they would prickle under the increased work load and refuse. And somewhere between them telling me and me sitting
down I would forget. And I started to believe them when they said it was because I was lazy, vague and did not try. I remember cluttered worksheets blending together in a swirl as I tried to find a handle I could use to understand numbers - then giving up and retreating to my world of books and words which made infinitely more sense to me. Looking back now I see a kid with mild dyscalcula and possible auditory processing issues.
I manage it now. Because I have worked hard to understand these issues I now know how to make my brain take detours around those parts that don't work well so I can function in the "real world". I research things myself until I understand them thoroughly because I usually don't retain what people tell me. It is like my brain mis-files it somewhere between my short term and long term memory. I ALWAYS have something to write in while I am talking to people in the hospital and those I work with regularly have learned just to give it to me in print wherever possible. I cover a lot of my little quirks. Most of my friends think I'm being funny when I take something said in jest literally - most of the time I will click a couple of hours later that they were speaking figuratively but in the conversation I instinctively cover my slips with cracks and jokes and witty comments and sometimes I just say weird stuff, the conversation gets a little awkward then we all move on and pretend it didn't happen. This is probably why
I would not class myself as having special needs because I function reasonably well in the world without others having to accommodate my needs now. I'm not actually special, I'm just quirky. But I remember the frustration of wanting to understand and fit in, trying to get the adults in my life to help me to succeed and finally accepting and applying to myself the label "lazy".
Take that, times it by a million, double it and times it by ten and move the decimal point eight places and you have a tiny speck of what I imagine those with special needs that aren't visibly identifiable to the average person face daily. People whose struggles with autism are belittled because they "look so normal". People whose illnesses or differences are written of as laziness or hypochondria.
Kaylee's diagnosis was made within a week of her birth. Many people take months if not years to get a label they can write on forms. Months and years of dealing with a sick child with no idea of what is coming next. Months and years of wondering if this is something which will dramatically reduce their child's life expectancy. Months and years of battling with doctors and red-tape-makers who think they are just being "over-dramatic" because there is no nice, neat diagnosis that attracts funding, support groups and research.
The visability factor doesn't make things easy by any means, the struggles are markedly different but they are still there. Wherever we go we stand out. I can't take my kid to the shop without people reacting in some way to Kaylee's tube. Most of the time (because she is all cute baby and chub) people are polite and curious. As they notice her tube and hear our story some people are horrified, shocked or awash with pity. There are days when I do wish that they only thing they would notice is her eye lashes and her hair. As much as I love teaching people about my girl and kids with special needs - there are days I would like a day off from being "special needs ambassador" to just be Mum, Dad and Kids hanging out together. But we are still at the approachable end of visible special needs. We are approachable, non-intimidating. She is cute. If she had a few less fingers or limbs, if her scars were on her face or head instead of hidden under her shirt, if she compulsively waved her arms in front of her face, if she was at the age people expected her to talk, walk and use a toilet and she didn't. Who would want to know her story, who would want to know her?
I generally do not try and read Kaylee's story before it is written but in all likelihood she will look different. In all likelihood she will act different. I will do my darndest to change the world before she gets into it. To change it to a world that does not judge people who do not talk as having nothing to say. To change it to a world that does not judge those who think slower, think different, as having no worthwhile thought. To change it to a world where people do not look at the weak, the broken and the less able and feel afraid. To change it to a world where people are valued and needs accommodated. Because they are NEEDS not seeking favouritism or creating inconvenience.
But if, by some strange chance, I do not change this world. If I do not roll out a red carpet of love and acceptance for her to walk in this world. I know that whether she looks different, or just is different, this world is a hard place to live in.
So please....change the world with me.
Saturday, February 18, 2012
Update and the voices in my head again..
We are all home and it is all good. Waiting now for a phone call to tell us what date Kaylee will have her surgery. It has been pushed back to March to give her time to recover fully from her little infection. I think what happened is (WARNING: TMI, gross bodily fluid talk) as Kaylee vomits it irritates the inside of her nose and makes her nose snotty and that actually runs down her cleft into her stomach which makes her reflux worse which makes her vomit more which irritates her nose more and we get into an incredibly gross spiral of snot and vomit. I think that she had a big vomit and it hit her snotty nose and bounced back into her lungs causing aspiration. She has pretty much recovered from that now but I am doing everything I can to interrupt any snot-vomit spirals. I am still not loving her sats and it is taking a big adjustment for me to learn that where she is now is OK because if she had been like this 3 months ago it would have been cause for concern. But she is growing out of her shunt and needs her full repair and we are best to wait a little while to make sure she is as strong as she can be. It is not a small heart surgery and while it does have a high success rate she needs all things possible in her favour.
One thing I have learned while at the Children's Hospital is there is always someone whose situation puts your own into perspective. I met a lovely Mum whose son had just had some holes in his heart repaired. As I talked to her she told me that her first and second sons were "heart kids" too. Her first boy was born with hypoplastic left heart syndrome. This is a pretty severe condition - perhaps the trickiest of all heart defects to fix - and after his first surgery he got a clot in his shunt. They had closed him up and it took 40 minutes to get blood flowing through his shunt again, by which time he was brain dead. They turned off the machines when he was three days old. Then she had another son with the same condition - hypoplastic left heart syndrome. He has just had his third surgery and is doing well however he will always be a heart patient. So all her three sons were born with heart issues, two extremely severe and one has passed away. As we were talking over cake she was saying to me "Wow! You mean your daughter is on a feed pump all the time? That must be hard! Wow, I can only imagine what you go through with that." I love her a little bit.
What I do is undeniably hard. I have these two parts of my brain, Drama Brain and Logic Brain. Drama Brain sees a small red patch on Kaylee's leg and screams "Oh nooooooo, she has one of those horrible flesh eating staph infections that is going to eat her leg OFF!!!! This is what comes from being in hospital so much. Curse you flesh eating staph infection, curse you to Hades!!!!" Logic Brain says "Looks like a bit of excema, probably from the blood pressure cuff being left on overnight. Put some coconut oil on it and watch it." I make up Kaylee's medicines every day and Drama Brain screams "Do you REALISE that if you get this consistently wrong the best case scenario is that your child suffers awful pain and the worst case scenario is she DIES and it is all your fault?" and Logic Brain says "...Yeah, what she said. Don't screw this up." You know you're in a stressful place when Drama Brain and Logic Brain are on the same page.
However I know that there are thousands of mothers who would love to have this stress. Who would love to have medicines to help their child's body work. Who would love to still have their child. And it puts my stuff in perspective.
One thing I have learned while at the Children's Hospital is there is always someone whose situation puts your own into perspective. I met a lovely Mum whose son had just had some holes in his heart repaired. As I talked to her she told me that her first and second sons were "heart kids" too. Her first boy was born with hypoplastic left heart syndrome. This is a pretty severe condition - perhaps the trickiest of all heart defects to fix - and after his first surgery he got a clot in his shunt. They had closed him up and it took 40 minutes to get blood flowing through his shunt again, by which time he was brain dead. They turned off the machines when he was three days old. Then she had another son with the same condition - hypoplastic left heart syndrome. He has just had his third surgery and is doing well however he will always be a heart patient. So all her three sons were born with heart issues, two extremely severe and one has passed away. As we were talking over cake she was saying to me "Wow! You mean your daughter is on a feed pump all the time? That must be hard! Wow, I can only imagine what you go through with that." I love her a little bit.
What I do is undeniably hard. I have these two parts of my brain, Drama Brain and Logic Brain. Drama Brain sees a small red patch on Kaylee's leg and screams "Oh nooooooo, she has one of those horrible flesh eating staph infections that is going to eat her leg OFF!!!! This is what comes from being in hospital so much. Curse you flesh eating staph infection, curse you to Hades!!!!" Logic Brain says "Looks like a bit of excema, probably from the blood pressure cuff being left on overnight. Put some coconut oil on it and watch it." I make up Kaylee's medicines every day and Drama Brain screams "Do you REALISE that if you get this consistently wrong the best case scenario is that your child suffers awful pain and the worst case scenario is she DIES and it is all your fault?" and Logic Brain says "...Yeah, what she said. Don't screw this up." You know you're in a stressful place when Drama Brain and Logic Brain are on the same page.
However I know that there are thousands of mothers who would love to have this stress. Who would love to have medicines to help their child's body work. Who would love to still have their child. And it puts my stuff in perspective.
Monday, February 13, 2012
going home
We are going home tomorrow.
Yesterday afternoon, we took Kaylee off the oxygen and she has stayed off it ever since.
Her sats are all over the place but as long as they are not sustaining low saturations, we aren't worrying about it. So I was sort of right, her sats are the way they are because she needs her repair - but the docs believe she will be fine to go home for a week or two and rest up before surgery. Home will be good.
Yesterday afternoon, we took Kaylee off the oxygen and she has stayed off it ever since.
Her sats are all over the place but as long as they are not sustaining low saturations, we aren't worrying about it. So I was sort of right, her sats are the way they are because she needs her repair - but the docs believe she will be fine to go home for a week or two and rest up before surgery. Home will be good.
Friday, February 10, 2012
Update
Here is my theory. I think that a combination of reflux and growing out of her shunt is making Kaylee need oxygen. I have a feeling that she had actually started well on the road to needing oxygen at home My guess is we are here until the Doctors realise this and schedule Kaylee's surgery. I don't have a medical degree, although I could probably get a degree in Kaylee, and I am happy to be proven wrong (it'd be nice to actually be able to PACK and PLAN properly!). But that's my theory.
Tomorrow we will try again and I have a feeling that I will once again be turning off alarms and watching to see that Miss K doesn't get too blue.
And then we will spend the rest of the day chilling out together
and we will do it all again the next day.
Do you a deal Miss Kaylee, you give up the nasal prongs and I will give up the mochas.
A day in the life....
One of the suggested topics for tube feeding awareness week is what our day looks like. Every tubie's day will look a little different. There are those on continuous feeds like us and others who are bolus feeds (big lots at once rather than little bits constantly). There are some who are continuous over night and bolus in the day. There are some who can take some of their nutrition orally and just need to top up through the tube and those who are reliant on the tube for every bit of nutrition. Tube fed people are babies, toddlers, children, adults and elderly with a vast array of interests and commitments.
For us, this is a "typical day" before we came into hospital this time around:
7:30 ish meds, hang feed, clean up Kaylee (give her a bath depending on how much she vomited overnight), get dressed, express (often takes me about an hour to an hour and a half first thing), grab some breakfast (sometimes Jon makes me poached eggs on toast!) and start schooling for the day.
11:30 hang feed, express, help make lunch, feed the kids and get Andrew and Anna off to bed
1:30 meds, finish any schoolwork not complete, try and get something constructive done (like house work, cooking, paperwork etc.)
3:30 meds, hang feed, express (I often catch a nap while sitting up and expressing), help bring in the washing and fold it, help the kids with the end of the day clean up and get them bathed while Jon cooks tea.
7:30 meds, hang feed, family worship and story time, get the kids off to bed and help Jon clean up from tea
8:30 express
11:30 meds, hang feed (I usually hang a larger volume and add a cooler bag with cooler bricks so it will be safe to leave until morning
Sometime between 12:30 - 1:30am meds
Dotted inbetween that is holding Kaylee if she has reflux, cleaning up any vomit, changing nappies (Kaylee's and Andrew's - although Jon does most of Andrew's!), fitting in Kaylee's various therapies, being a Mum to my other kids, being a wife to that fantastic husband of mine who picks up all the slack and finding time to pee. Some of those meds need to be crushed up, suspended in water then measured out and others I can just draw up. I am hoping when we go home after Kaylee's heart repair we will have significantly fewer med times. Few days actually work out to be typical, but most days we get it all done and Kaylee always gets her feeds and meds.
For us, this is a "typical day" before we came into hospital this time around:
7:30 ish meds, hang feed, clean up Kaylee (give her a bath depending on how much she vomited overnight), get dressed, express (often takes me about an hour to an hour and a half first thing), grab some breakfast (sometimes Jon makes me poached eggs on toast!) and start schooling for the day.
11:30 hang feed, express, help make lunch, feed the kids and get Andrew and Anna off to bed
1:30 meds, finish any schoolwork not complete, try and get something constructive done (like house work, cooking, paperwork etc.)
3:30 meds, hang feed, express (I often catch a nap while sitting up and expressing), help bring in the washing and fold it, help the kids with the end of the day clean up and get them bathed while Jon cooks tea.
7:30 meds, hang feed, family worship and story time, get the kids off to bed and help Jon clean up from tea
8:30 express
11:30 meds, hang feed (I usually hang a larger volume and add a cooler bag with cooler bricks so it will be safe to leave until morning
Sometime between 12:30 - 1:30am meds
Dotted inbetween that is holding Kaylee if she has reflux, cleaning up any vomit, changing nappies (Kaylee's and Andrew's - although Jon does most of Andrew's!), fitting in Kaylee's various therapies, being a Mum to my other kids, being a wife to that fantastic husband of mine who picks up all the slack and finding time to pee. Some of those meds need to be crushed up, suspended in water then measured out and others I can just draw up. I am hoping when we go home after Kaylee's heart repair we will have significantly fewer med times. Few days actually work out to be typical, but most days we get it all done and Kaylee always gets her feeds and meds.
Of Mochas and O2
Today we are attempting to get Miss Kaylee off oxygen so we can go home. So far every time we have tried to do this her oxygen levels start hanging out in the mid to high 60's. FYI, "normal" people's sats sit in the high 90's - we were happy if Kaylee's sat over 75. That's my girl in a nut shell. Vomiting blood with oxygen saturations 3/4 of that of the mere mortal? Meh. A sniffle? Airlifted to one of the top paediatric hospitals in the world.
After several attempts to get Miss K to kick the O2 habit and maintain sats over 75 the docs are now theorising that perhaps she is just outgrowing her 3mm shunt (likely seeing as she is due for full repair this month anyway) and seeing as she seems to cope with lower sats anyway lets just take her off the O2 and watch her closely for a bit. So we took her nasal prongs away and I got myself a jumbo mocha because by now, I have realised we are in for a loooong day. By the time I had got myself a mocha she was sitting in the lower 50's with a touch of a colour change so we have started wafting a bit of O2. That means sitting a mask on her chest so the air around her has a higher proportion of oxygen just so as an interm step toward being O2 supplement free.
Things that will make Kaylee set off alarms today that we don't have to worry about too much:
Filling her nappy
Wiggling too much and dislodging a probe
changing her nappy and knocking a probe
vomiting
reflux (have I mentioned how often Kaylee vomits or has reflux? It's a lot)
getting a nose full of vomit or snot
probes deciding not to work
Things that we do have to worry about:
If her sats sit too low for too long
she stops breathing
she has a major colour change
So currently Kaylee is sitting on my lap "helping" me type as I reach up to switch of the alarm above my head which is periodically going BONG BONG BONG BONG BONG!!!!!! or sometimes, especially if I am not fast enough, BING BING BING BING BING!!!!!!
And I am feeling quite fabulous because the caffeine from the mocha and the O2 that is wafting up over me combine to make the world a very warm, happy, fuzzy place and our nurses especially lovable.
You gotta take your kicks where you can get 'em.
After several attempts to get Miss K to kick the O2 habit and maintain sats over 75 the docs are now theorising that perhaps she is just outgrowing her 3mm shunt (likely seeing as she is due for full repair this month anyway) and seeing as she seems to cope with lower sats anyway lets just take her off the O2 and watch her closely for a bit. So we took her nasal prongs away and I got myself a jumbo mocha because by now, I have realised we are in for a loooong day. By the time I had got myself a mocha she was sitting in the lower 50's with a touch of a colour change so we have started wafting a bit of O2. That means sitting a mask on her chest so the air around her has a higher proportion of oxygen just so as an interm step toward being O2 supplement free.
Things that will make Kaylee set off alarms today that we don't have to worry about too much:
Filling her nappy
Wiggling too much and dislodging a probe
changing her nappy and knocking a probe
vomiting
reflux (have I mentioned how often Kaylee vomits or has reflux? It's a lot)
getting a nose full of vomit or snot
probes deciding not to work
Things that we do have to worry about:
If her sats sit too low for too long
she stops breathing
she has a major colour change
So currently Kaylee is sitting on my lap "helping" me type as I reach up to switch of the alarm above my head which is periodically going BONG BONG BONG BONG BONG!!!!!! or sometimes, especially if I am not fast enough, BING BING BING BING BING!!!!!!
And I am feeling quite fabulous because the caffeine from the mocha and the O2 that is wafting up over me combine to make the world a very warm, happy, fuzzy place and our nurses especially lovable.
You gotta take your kicks where you can get 'em.
Thursday, February 09, 2012
Our Journey to Tubie Town
One of the topics for Tube Feeding Awareness Week is how we got here.
If you have read my blog at all in the last couple of months you probably know a bit about our journey thus far. If you are new to this blog try THIS and THIS post or the CdLS page for a description of Kaylee's condition and how we got where we are today. But I will start at the start.
When Kaylee was born I thought "Wow she is tiny. Those are some funky little hairy patches on her thighs I wonder what that means. She is beautiful. How am I going to get this tiny baby to latch and feed? How am I going to keep her warm?"
I am a long term breast feeder I guess, having fed 5 kids previous to Kaylee's birth. In fact, for the first half of my pregnancy with her I was still feeding Kaylee's older brother. Feeding my babies has always been one of the most pleasurable aspects of mothering a tiny baby for me. I treasured those moments when I would be forced to slow down and savour their tiny perfection as they guzzled greedily at my breast. For a couple of them, it required work and patience and time to get things working properly, but we always managed it and while I knew it would be a challenge with the tiny infant I had in my arms it didn't occur to me that we wouldn't have a "normal" feeding relationship - I just figured it would take some work. After some rather horrid afterpains I was curled up in bed with a tiny bundle of baby carefully expressing clostrum into her mouth. She lapped at it and opened her mouth but showed no signs of really wanting to attach. After a while we trundled accross to the hospital where I thought they would tell me what kind of syndrome she had and I would take her home to figure out the feeding thing....little did I know.
The next weeks - perhaps months - was a complete blur of hospitals, transports, tubes, wires and a million other interventions and experiences which I do not really care to relive. I know her feeding tube was placed sometime in there - perhaps during her first PICU stay the day after we flew in to Melbourne? That would seem to make sense. I expressed with dogged determination. I remember the first time I managed to express a decent amount of milk. It was the middle of the night and I was reading a message from my oldest daughter which read "Compared to my love for you the sky is like a dot". I carefully screwed the lid on my milk and RAN to Kaylee and cried out to her "Look baby, I made you milk!!" and he nurse very carefully started it going down her feeding tube and into her little tummy. And thus began my love-hate relationship with feeding tubes. As I said a few days ago to another tubie mama - feeding tubes, love that they keep my kid alive, hate every other dang thing about them.
Kaylee was a few days old when we made it up to the cardio ward. It had been a rough few days for both of us but she was finally stable. With the help of Sue, one of the lactation consultants, I put Kaylee to the breast but I have to admit my expectations were very low. I was completely blown away when she actually tried to feed!
It was a balancing act to put her to the breast to try and feed without exhausting her. A combination of a cleft palate, heart condition, poor suck and swallow coordination and poor muscle tone and control all due to her syndrome made feeding very difficult. Because she had the feeding tube, she was able to stay hydrated and well fed which gave her the best chance of learning how to feed for herself. Without the feeding tube, Kaylee would not have survived her first week. We did try her with a special bottle designed for children with special needs but she only got a few mls more than she did at the breast (8ml as opposed to 3 ml, and the bottle tended to try and drown her a bit which wasn't good) so I opted to keep trying at the breast instead because of all the other benefits of direct breast feeding and I had the option to do that because all her milk was getting into her anyway through her tube.
As I researched more and more about Cornelia de Lange Syndrome I learned that reflux was a major life long issue for most people with the syndrome and I became very proactive in asking for her reflux to be assessed and managed with this in mind. Because of the excellent care she received we had little trouble with reflux until after Kaylee's first cardio surgery. Unfortunately after her shunt was placed Kaylee needed to go on a medication which interacted with her reflux medication. She was still on a different medication but it was not as effective and Kaylee's reflux started messing with her heart stuff. Just as we had started going to 3 hourly feeds rather than hourly or continuous - which was a big step toward "normal" - we had to place an NJ tube instead of her NG tube. This is a tube which goes through her stomach and sits in her small intestine. I love the NJ tube because without it Kaylee's heart condition would still be requiring her to be in hospital. I love the NJ tube because without it Kaylee (whose reflux has gotten more and more severe) would probably vomit a large portion of what she was fed and would not be growing or putting on weight at the rate that she needs to so she can get ready for her surgery. I love the NJ tube because it keeps my baby alive! It gets my milk into her which has helped her stay reasonably healthy and grow delightful fat rolls. It means I can give her medicine without worrying about her vomiting it up or spitting it out. I can keep her well hydrated - a very important thing as dehydration could make her shut stop working. But I hate it for every other reason.
The NJ tube needs to be placed by a radiologist so they can take pictures of where it is which means if it gets clogged or kinked we need to go to hospital - and if that happens after hours (which, for some reason, it almost always does) we need to stay overnight until they come in the next day.
The NJ tube means that Kaylee must be fed small amounts continually. This means she does not get hungry - which SOUNDS good. But learning what hunger means and that one needs to eat to stop feeling hungry is something that most babies do without us really thinking about it. Right now Kaylee is not learning that lesson. The cycle of hunger and feeding also means that a baby wakes up and interacts with either Mum or Dad and uses mouth muscles (the same muscles used for speaking, chewing, swallowing saliva etc. - all things that Kaylee was going to find challenging anyway with her other issues) several times a day - and in some cases several times a night! The nerves that feel the sensations of hunger, being touched and held for a feed, milk being drunk, tummies getting full all send messages to the brain not only about food and eating but about where the baby's body is in space (sitting, lying, being touched etc) and the brain creates pathways with this information which we use every day for our whole lives without even thinking about it. To help Kaylee develop these pathways I massage her gums, give her skin-to-skin contact, put expressed milk on her dummy so she can experience taste (she used to suck her dummy but since her reflux has worsened Kaylee has largely lost her sucking abilities, we will have to re-teach her to suck). There are fabulous therapists who will help us with all of these things as we come to them. So as with most big medical interventions, there is the good AND the bad.
After Kaylee's heart surgery we will start doing more with her feeding tube. Trying out an NG which is a tube through her nose to her stomach (which I can learn to place at home, eliminating the need for quite so many hospital visits). We may have a G tube placed which goes through her the wall of her tummy into her stomach and sometimes (in the case of a GJ) into her intestines which would eliminate the irritation of a tube in her nose and throat. Perhaps we will be able to move to bolus feeds where we give feeds every few hours rather than continuously which would be wonderful. There is no reason why Kaylee can't start to learn to eat "normally" as we get her other health issues sorted out - but it will take her a while. In the mean time I will be able get all the breastmilk and medicines into her which she needs.
We have learned just how common the tubie experience is since we were introduced to this world. It isn't just people who are as unwell as Miss K. There are some people who look "normal" who lift their shirts and hook up a pump to their belly for a feed. For most who have them a tube is a life improving - if not life giving - measure and the best chance they've got at getting well. We have been blessed by the knowledge, support and information provided by other tubie families and support groups and it helps us make informed choices for Miss Kaylee, our little tulip.
So that's how we got here and this is where we are going for now. If you ever find yourself in a position where you are having to manage a feeding tube there are some links to resources at the bottom of our Cornelia De Lange page
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