Friday, August 30, 2013
plastic bronchitis parents' group on facebook posted this recently
''Our
son just had the new technique to map out and image the lymph system to
see how it flows. This is an MRI procedure where they inject dye into
the lymphatic system and watch how it flows. There is a branch that
breaks off the thoracic duct and flows right into his left lung. This is
the answers they are finding for all plastic bronchitis paintents that
they image. The Fontan causes extra lymph systems to grow off the
thorastic duct and for these kids it will go to the path of least
resistance which is the lungs. They just glued up this leaking lymph
branches in a patient 3 weeks ago who was coughing up casts daily he has
been cast free since this procedure is done. This procedure is to take
the place for thorastic duct litigation because it has so many risks.
This procedure only targets the extra lymph vessels that have grown and
they glue them up no extra risk. The imaging today showed he has extra
lymph vessels that have grown around his left lung and dump into it
causing plastic bronchitis. I'm not talking about leaking into the chest
cavity it's lymph fluid that dumps into the lungs which makes the
casts. Though they said this is an easy fix now that they know what is
going on and what causes plastic bronchitis in patients. Our son will
next be scheduled to have these leaking lymph vessels glued up to stop
his plastic bronchitis! We are very hopeful!''
I thought that might be interesting for all the parents searching for solutions. Apparently , there is a confirmation that due Fontan circulation creates a break of thoracic duct and flows into the lungs . There is a new MRI procedure which can help vizualise the breakage . Also the doctors found a procedure to glue the vessels .
There is maybe a new path and hope !
Wednesday, May 5, 2010
I thank you to you all… who replied or who simply are beside us, in a way or another!
Maria is in a normal room now. The bring her in the intensive care unit usually during the week-end. I hope they won’t do the same this time too. Anyway, the doctors reconsidered the decision of operating her after three months. They decided the surgery should take place now while she’s stable. They are going to extirpate a part from the left lung which is more affected. They noticed the oxygen saturation drops severely during the night and they consider it dangerous to give her home.
Anyway, their sincere concern for Maria’s health gives us that feeling of peace that we never had when she was home. Yesterday, before they decided if they are going to operate her or not, we were also advised us to have, through the health insurance, a medical nurse when we take her home so that she would be in permanent contact with the hospital.
We were not told yet if they are going to operate her here or they are going to transfer us to another hospital, as here they are specialized in heart diseases and the surgery will be for lungs.
Maria is alright now, she eats better than ever, only food with fat bellow 1%. She ravens as if she knew it will follow a new period of starving.
And she asks me if we are going to stay in hospital for long.
I began to run out of answers…
Maria is in a normal room now. The bring her in the intensive care unit usually during the week-end. I hope they won’t do the same this time too. Anyway, the doctors reconsidered the decision of operating her after three months. They decided the surgery should take place now while she’s stable. They are going to extirpate a part from the left lung which is more affected. They noticed the oxygen saturation drops severely during the night and they consider it dangerous to give her home.
Anyway, their sincere concern for Maria’s health gives us that feeling of peace that we never had when she was home. Yesterday, before they decided if they are going to operate her or not, we were also advised us to have, through the health insurance, a medical nurse when we take her home so that she would be in permanent contact with the hospital.
We were not told yet if they are going to operate her here or they are going to transfer us to another hospital, as here they are specialized in heart diseases and the surgery will be for lungs.
Maria is alright now, she eats better than ever, only food with fat bellow 1%. She ravens as if she knew it will follow a new period of starving.
And she asks me if we are going to stay in hospital for long.
I began to run out of answers…
Labels: Maria's Diary
Thursday, April 29, 2010
The tricuspid atresia is a heart malformation where the tricuspid valve is dysfunctional or in Maria’s case was totally missing and it was replaced by a membrane.
When Maria was only two months old, the doctors from Targu Mures told us that there isn’t any solution for her, except double cardio pulmonary transplant.
We got stronger and we searched for solutions abroad. They are called palliative surgeries and, in Romania, they aren’t entirely performed yet. Back then, the same as we do now, we took things step by step and we said “we’ll see what is going to happen next”. You were beside us, many people from “despre copii” (“about children”) and from other places too. We strongly believed every word of the foreign surgeons.
I gathered in time all information referring to Maria’s heart disease, as most of the time we were isolated in some hospital or at home.
We even have a document signed by a foreign doctor where we were told that after completion of the surgeries she has 90% chances to a normal life, which encouraged us a lot.
After the last heart surgery, the third stage of the Fontan procedure, they prescribed us Coumadin. Then it was the first time when I read about the long-term effects of Coumadin, I understood that new complications are to come, thrombosis or maybe haemorrhages, or liver diseases. Coumadin, like other medicines, is good for something and not so good for other organs.
We understood that we were not going to have a normal life and we decided to settle abroad, in Germany, near the hospital.
Since with the plastic bronchitis, I found out there are things much worse than long-term side effects of Coumadin. I read again updated information about tricuspid atresia, I read about how they try extending life for the cardiac people in Western countries, with palliative surgeries. I know there are another 8 or 9 mothers who have children affected by this disease, some of them are on the waiting list, sometimes for a double transplant, as we were suggested in Romania about five years ago and others are assisted with “compassion”, an expression invented by western medicine for the parents who stopped fighting the disease.
Now when I got here I wonder which is preferable: the hardness of a Romanian doctor who tells the mother “go home and have another child, cause this one is going to die” or the “compassionate assistance”??? This “go home” is also one of the reasons why many babies born with malformations are abandoned in maternity. But the “compassionate assistance” is much, much harder to bare!
My greatest wish is to find an adult person with corrected tricuspid atresia who “lives almost normal” today or who simply “lives”.
I live with the guilt that I didn’t know then all I know now and with the guilt that I have always promised to some people dear to Maria that she would live a normal life.
But I know for sure that we would have never given up. These five years with Bella are the most beautiful years in our lives and we are very very happy! Even if our heart is crying.
As a treatment to plastic bronchitis, the German doctors try everything it was tried before, by very few others. Maria was ten days in the intensive care unit and three days in a normal hospital room, but because the oxygen saturation dropped again the following day, she was brought again in the intensive care unit. When we’ll have her home, she’ll have an inhalator and a medication schedule recommended by the doctors.
From the list of the very few who suffer from this disease, about seven and I’m talking only about cardiac children with tricuspid atresia, there are very few “alive” and most of them are “awaiting”. I really hope this “awaiting” means that they are on the transplant waiting list. The rest are “expired” in medical slang.
We are ready to go all the way and we only pray to God to give us strength to be able to endure. They hope the same. She can barely stand the oxygen mask already and the repeated inhalations. Yesterday she was lemon yellow and she was asking if I think we’ll be staying in hospital for long. And I was smiling while telling her: “yes, honey, it’s very nice here and we should stay a little longer, because the doctor loves us, and I sleep very well on the couch outside, and they have delicious meal, yummy… we have a room only for ourselves and all these nice ladies who bring us books and presents would like us to stay a little more.” And let’s better sing something, we lost the CD with Cleopatra Stratan and we are listening to Christmas carols now. She falls asleep. And as long as she still makes lists with what she wants us to bring her tomorrow, it’s a great day for us.
When Maria was only two months old, the doctors from Targu Mures told us that there isn’t any solution for her, except double cardio pulmonary transplant.
We got stronger and we searched for solutions abroad. They are called palliative surgeries and, in Romania, they aren’t entirely performed yet. Back then, the same as we do now, we took things step by step and we said “we’ll see what is going to happen next”. You were beside us, many people from “despre copii” (“about children”) and from other places too. We strongly believed every word of the foreign surgeons.
I gathered in time all information referring to Maria’s heart disease, as most of the time we were isolated in some hospital or at home.
We even have a document signed by a foreign doctor where we were told that after completion of the surgeries she has 90% chances to a normal life, which encouraged us a lot.
After the last heart surgery, the third stage of the Fontan procedure, they prescribed us Coumadin. Then it was the first time when I read about the long-term effects of Coumadin, I understood that new complications are to come, thrombosis or maybe haemorrhages, or liver diseases. Coumadin, like other medicines, is good for something and not so good for other organs.
We understood that we were not going to have a normal life and we decided to settle abroad, in Germany, near the hospital.
Since with the plastic bronchitis, I found out there are things much worse than long-term side effects of Coumadin. I read again updated information about tricuspid atresia, I read about how they try extending life for the cardiac people in Western countries, with palliative surgeries. I know there are another 8 or 9 mothers who have children affected by this disease, some of them are on the waiting list, sometimes for a double transplant, as we were suggested in Romania about five years ago and others are assisted with “compassion”, an expression invented by western medicine for the parents who stopped fighting the disease.
Now when I got here I wonder which is preferable: the hardness of a Romanian doctor who tells the mother “go home and have another child, cause this one is going to die” or the “compassionate assistance”??? This “go home” is also one of the reasons why many babies born with malformations are abandoned in maternity. But the “compassionate assistance” is much, much harder to bare!
My greatest wish is to find an adult person with corrected tricuspid atresia who “lives almost normal” today or who simply “lives”.
I live with the guilt that I didn’t know then all I know now and with the guilt that I have always promised to some people dear to Maria that she would live a normal life.
But I know for sure that we would have never given up. These five years with Bella are the most beautiful years in our lives and we are very very happy! Even if our heart is crying.
As a treatment to plastic bronchitis, the German doctors try everything it was tried before, by very few others. Maria was ten days in the intensive care unit and three days in a normal hospital room, but because the oxygen saturation dropped again the following day, she was brought again in the intensive care unit. When we’ll have her home, she’ll have an inhalator and a medication schedule recommended by the doctors.
From the list of the very few who suffer from this disease, about seven and I’m talking only about cardiac children with tricuspid atresia, there are very few “alive” and most of them are “awaiting”. I really hope this “awaiting” means that they are on the transplant waiting list. The rest are “expired” in medical slang.
We are ready to go all the way and we only pray to God to give us strength to be able to endure. They hope the same. She can barely stand the oxygen mask already and the repeated inhalations. Yesterday she was lemon yellow and she was asking if I think we’ll be staying in hospital for long. And I was smiling while telling her: “yes, honey, it’s very nice here and we should stay a little longer, because the doctor loves us, and I sleep very well on the couch outside, and they have delicious meal, yummy… we have a room only for ourselves and all these nice ladies who bring us books and presents would like us to stay a little more.” And let’s better sing something, we lost the CD with Cleopatra Stratan and we are listening to Christmas carols now. She falls asleep. And as long as she still makes lists with what she wants us to bring her tomorrow, it’s a great day for us.
Labels: Mommy
Tuesday, April 27, 2010
Bella is five years old, fairy-tale years. We stayed in hospitals for a long time, passing our time with fairy-tales. This helped Bella very much and even now she refuses to accept the hospital's reality or she integrates it in a fairy-tale, and keeps her mind vivid. She always wants us to read something or to watch a fairy-tale, or to draw her a fairy-tale if I don't have anything else at hand. "Thumbelina" is her favorite.
Once upon a time there was a woman who had everything she wished for, a loving husband... a comfortable life. One day a witch... or maybe a fairy came - the godmother as we know her nowadays - and she asked what was the woman's greatest wish. After she thought over for a while, the woman answered that her greatest wish is a beautiful little girl. Then she received a flower seed, it was a magical seed of course, which she planted in her soul. Very soon it sprung a little girl, very little and very beautiful. She was as little as a small baby.
The girl had very beautiful big eyes, as beautiful as only angels have in our dreams, she had a sweet smile, a wonderful voice, but only a half heart.
Once upon a time there was a woman who had everything she wished for, a loving husband... a comfortable life. One day a witch... or maybe a fairy came - the godmother as we know her nowadays - and she asked what was the woman's greatest wish. After she thought over for a while, the woman answered that her greatest wish is a beautiful little girl. Then she received a flower seed, it was a magical seed of course, which she planted in her soul. Very soon it sprung a little girl, very little and very beautiful. She was as little as a small baby.
The girl had very beautiful big eyes, as beautiful as only angels have in our dreams, she had a sweet smile, a wonderful voice, but only a half heart.
Then the little girl and her parents set forward for finding the other half of her heart. They went from hospital to hospital, from country to country, asking everyone they met if they hadn't found a half of a heart. Some of them guided them further, others offered them shelter when they were tired and others helped them to find the way, because many times they got lost, and they all charmed by the little girl, who was growing older and wiser.
Sometimes they walked, other times a blue swallow was carrying them on its wings, until they got to a magical land, where all the people were dressed in white and they were all smiling when meeting the little girl. They were telling her that she grew up, that she is no more as small as a thumb and they are going to call her Maria, the princess of the flowers from the soul.
They all started searching for the half of the heart in the land of flowers and they found it in the end. It was hanging in a Christmas tree, around which were gathering joyful angels and children.
And they lived happily until the end of Time."Sometimes they walked, other times a blue swallow was carrying them on its wings, until they got to a magical land, where all the people were dressed in white and they were all smiling when meeting the little girl. They were telling her that she grew up, that she is no more as small as a thumb and they are going to call her Maria, the princess of the flowers from the soul.
They all started searching for the half of the heart in the land of flowers and they found it in the end. It was hanging in a Christmas tree, around which were gathering joyful angels and children.
"Are they happy now, mommy?"
"Yes, honey, they are!"
"Are we happy?"
"We are very very happy, Bella!"
and I cannot help my tears... tears of happiness that she grew up and she understands... but at the same time tears of pain and sadness because I don't know how and why the Time wants to stop again...
Labels: Mommy
Monday, April 26, 2010
Bella Maria developed a lungs’ affection after the surgery for correcting the heart problems.
This is a very rare affection that appears to cardiac children especially after TOTAL CAVO PULMONARY ANASTOMOSIS. It is called PLASTIC BRONCHITIS and there are very few case reports in the world - approximately 40 - and very few of them are referring to children. The mortality rate is of 49% among children. The medical attendances are diverse. As many things have been tried for this affection, nobody can tell which is the best cure. It varies from person to person.
Now Maria is hospitalized in Deutsches Herzzentrum Munich, Germany. We came here a year ago for monitoring Bella Maria’s heart. Here we started a new life, a life very difficult for us and the girls. She is in the intensive care unit now and a team of wonderful doctors take care of her. Now she is in stable condition and we hope she’s on the right track.
We need more information regarding this affection, especially from people who outlived this disease, especially regarding children, cardiac children. We also know that even if they stabilize her condition and we can take her home, the disease may reappear. The doctors could only tell us that there is a long way, but they couldn’t explain exactly what this means.
Thank you,
Rodica Ionescu
This is a very rare affection that appears to cardiac children especially after TOTAL CAVO PULMONARY ANASTOMOSIS. It is called PLASTIC BRONCHITIS and there are very few case reports in the world - approximately 40 - and very few of them are referring to children. The mortality rate is of 49% among children. The medical attendances are diverse. As many things have been tried for this affection, nobody can tell which is the best cure. It varies from person to person.
Now Maria is hospitalized in Deutsches Herzzentrum Munich, Germany. We came here a year ago for monitoring Bella Maria’s heart. Here we started a new life, a life very difficult for us and the girls. She is in the intensive care unit now and a team of wonderful doctors take care of her. Now she is in stable condition and we hope she’s on the right track.
We need more information regarding this affection, especially from people who outlived this disease, especially regarding children, cardiac children. We also know that even if they stabilize her condition and we can take her home, the disease may reappear. The doctors could only tell us that there is a long way, but they couldn’t explain exactly what this means.
Thank you,
Rodica Ionescu
Labels: Mommy
Sunday, April 25, 2010
As I was telling you before, my name is Bella and Maria, and my story is a long story… even if I’m only five years old (soon). Some of you already know it… some of you helped me to get until here… some of you have always loved me.
Most of the time they call me Bella, when I am at home with my mom, my dad, my sister and my grandparents… they spoil me a loooot… because they love me a looooot too. As I was telling you I have a few heart surgeries and I am a brave girl. And, unfortunately, I got used to stay in the hospital most of the time. I realized that it’s difficult to be five years old and to be called Maria as well. Bella is adored, she receives almost everything she wishes, Milka, Kinder Joy… she plays in the park and preambulates the penguin – Mambo… she draws and sings all day long. Maria is intubated, stung, connected to devices, weak… she drinks a thousand pungent medicines, she receives water on ration and food called “essen” and “trinken”… she is isolated in the intensive care unit and she waits for many long hours for the door to open and see mommy and daddy coming in.
I like very much to be called Bella and to sleep in my mom's arms on the chair near the door from the intensive care unit.
Most of the time they call me Bella, when I am at home with my mom, my dad, my sister and my grandparents… they spoil me a loooot… because they love me a looooot too. As I was telling you I have a few heart surgeries and I am a brave girl. And, unfortunately, I got used to stay in the hospital most of the time. I realized that it’s difficult to be five years old and to be called Maria as well. Bella is adored, she receives almost everything she wishes, Milka, Kinder Joy… she plays in the park and preambulates the penguin – Mambo… she draws and sings all day long. Maria is intubated, stung, connected to devices, weak… she drinks a thousand pungent medicines, she receives water on ration and food called “essen” and “trinken”… she is isolated in the intensive care unit and she waits for many long hours for the door to open and see mommy and daddy coming in.
I like very much to be called Bella and to sleep in my mom's arms on the chair near the door from the intensive care unit.
Labels: About me
Sunday, April 11, 2010
My name is Bella Ionescu... soon I'll be 5 years old and my mommy loves me so very much... I think it was love at first sight... and, anyway, my mom is a real hero, because how many people would dare to dedicate and sacrifice their life for a little baby to whom the doctors didn't give any chance of survival when she was born and left alone in maternity could only hope for a miracle in order to live until today...
The miracle came true thanks to Rodica and Adrian Ionescu, my mom and dad, who don't know what to do and how to manage with all my surgeries and my medical treatments... because although I am only 4 years old, I've already had 4 heart surgeries... And I hoped that all treatments... and kynetotherapy... all the pain had come to an end, as my heart is better now, thank God (at least until I grow a little more)... but it seems that it's not over yet... as due to the heart surgeries, now I have some lungs' complications... complications which happened only to a few other people in the whole world and this makes things more difficult... and the doctors are somehow overwhelmed ...
My lungs' affection is called "Plastic bronchitis" and everyone is trying to learn more about it and especially to find a treatment solution...
I am a brave girl and I can endure a lot... but now I'm so tired... and weak... and scared... and when I see that my mom and dad are so worried and scared too, I don't know what to think anymore...
I am afraid...
My lungs' affection is called "Plastic bronchitis" and everyone is trying to learn more about it and especially to find a treatment solution...
I am a brave girl and I can endure a lot... but now I'm so tired... and weak... and scared... and when I see that my mom and dad are so worried and scared too, I don't know what to think anymore...
I am afraid...
Labels: About me
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