Friends, now I have just read the eight pages and was very emotional for a single heart.. Thank you for all the love. Today I was with LARISSA during the morning I was taking disposable diapers for her and I told her that her machine had just come to Brasil by air. She gave a long laugh, her eyes were pure brightness with undescribable joy. Larissa is a good angel and a very enlightened example of a large claw of will to live. Everyone here with LARISSA learned the true meaning of the word LOVE.
Thank you! A blue kiss on the tip of the nose with all my love.
CLÁUDIA TOLEDO-DR. CACAU
Little Larissa - please read
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
To protect the machine from little ones or pets...
A pet (cat) carrier works. Just place the machine inside. There is plenty of air circulation and one with mesh sides only needs to have a couple of small holes cut in the mesh for hoses and wires.
Brenda
A pet (cat) carrier works. Just place the machine inside. There is plenty of air circulation and one with mesh sides only needs to have a couple of small holes cut in the mesh for hoses and wires.
Brenda
_________________
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Love my papillow, Aussie heated hose and PAD-A-CHEEKS! Also use Optilife, UMFF(with PADACHEEK gasket), and Headrest masks Pressure; 10.5 |
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Guest
_________________Dr. Claudia Toledo-Cacao wrote:Hello friends!
Bringing news of little LARISSA for today Sunday 04 May 2008. She is doing very well, got up from bed, took a bath of sunlight ( I wonder if this means she got up like a bath of sunshine, as opposed to her depression, ... O.), she is walking (running?) all over the place. She is very happy. A blue kiss on the tip of the nose
Dr. Claudia Toledo-Cacao
CPAPopedia Keywords Contained In This Post (Click For Definition): news
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
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rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Great pictures of a lovely little girl and the people who are working with her every day!
Brazilian, Banned, Dra. Toledo-Cacao, Dra. Simão -- what wonderful things you have done for little Larissa.
Creative suggestion, Brenda (bdp522), about using a pet carrier to keep the machine away from curious little fingers. Clever idea.
Brazilian, Banned, Dra. Toledo-Cacao, Dra. Simão -- what wonderful things you have done for little Larissa.
Creative suggestion, Brenda (bdp522), about using a pet carrier to keep the machine away from curious little fingers. Clever idea.
ResMed S9 VPAP Auto (ASV)
Humidifier: Integrated + Climate Control hose
Mask: Aeiomed Headrest (deconstructed, with homemade straps
3M painters tape over mouth
ALL LINKS by rested gal:
viewtopic.php?t=17435
Humidifier: Integrated + Climate Control hose
Mask: Aeiomed Headrest (deconstructed, with homemade straps
3M painters tape over mouth
ALL LINKS by rested gal:
viewtopic.php?t=17435
Pediatric Hypoventilation
This is certainly an exciting thread! The most important part of this thread from my perspective is how everyone has pulled together to help a bright-eyed and smiling little angel named Larissa.
Another important part of this thread, at least for me, has been the learning process. Below, SAG links to a case-study submitted by a very well-managed sleep center that he just so happens to personally oversee in Connecticut:
Surgical removal of the occluding tonsils appeared to result in elimination of the hypoventilation syndrome. I find this case interesting because there were no obstructive sleep events associated with those enlarged tonsils, only hypoventilation syndrome. But I also find myself wondering whether pediatric hypoventilation syndrome can be episodic in nature. If the answer to that question is "yes" then the tonsils may or may not be the underlying cause of hypoventilation syndrome. No follow-up symptoms or episodes whatsoever imply that the tonsils were most likely the cause of hypoventilation syndrome (or so this head-scratching layperson might curiously posit).
I also find myself wondering how alveolar hypoventilation is adequately differentiated from central hypoventilation in either rare type of pediatric case. My hunch is that practical criteria-based diagnostic inferences were employed in both rare pediatric cases (as opposed to some highly impractical direct observation/measurement toward classifying underlying etiology as either central or alveolar).
As always I thank SAG for providing us with his considerable expertise and very kind guidance!
And again I wish to thank Brazilian, Banned, Dra. Toledo-Cacao, Dra. Simão, and so many others for the kindness that you have literally spread around the world!
And best wishes to our little Larissa!! May she grow up happy and healthy in her own home---because of the kindness and devotion so generously bestowed from such good-hearted people around the world!!
Thank you all for so generously nourishing my heart in the process of helping Larissa!!!
.
Another important part of this thread, at least for me, has been the learning process. Below, SAG links to a case-study submitted by a very well-managed sleep center that he just so happens to personally oversee in Connecticut:
I find the above case study to be very interesting. I also find that study to be potentially important in similar rare cases of hypoventilation syndrome. The above pediatric case study conveys that enlarged tonsils contributed to hypoventilation syndrome, yet not frank or overt obstructive sleep events.StillAnotherGuest wrote: It is not clear to me if in fact, she has central hypoventilation or alveolar hypoventilation (which does have obstructive etiology), and may be responsive to surgery:
Using Microstream® Capnography to Detect Alveolar Hypoventilation Syndrome in the Sleep Lab
Surgical removal of the occluding tonsils appeared to result in elimination of the hypoventilation syndrome. I find this case interesting because there were no obstructive sleep events associated with those enlarged tonsils, only hypoventilation syndrome. But I also find myself wondering whether pediatric hypoventilation syndrome can be episodic in nature. If the answer to that question is "yes" then the tonsils may or may not be the underlying cause of hypoventilation syndrome. No follow-up symptoms or episodes whatsoever imply that the tonsils were most likely the cause of hypoventilation syndrome (or so this head-scratching layperson might curiously posit).
I also find myself wondering how alveolar hypoventilation is adequately differentiated from central hypoventilation in either rare type of pediatric case. My hunch is that practical criteria-based diagnostic inferences were employed in both rare pediatric cases (as opposed to some highly impractical direct observation/measurement toward classifying underlying etiology as either central or alveolar).
As always I thank SAG for providing us with his considerable expertise and very kind guidance!
And again I wish to thank Brazilian, Banned, Dra. Toledo-Cacao, Dra. Simão, and so many others for the kindness that you have literally spread around the world!
And best wishes to our little Larissa!! May she grow up happy and healthy in her own home---because of the kindness and devotion so generously bestowed from such good-hearted people around the world!!
Thank you all for so generously nourishing my heart in the process of helping Larissa!!!
.
Hi, all!
Ozij & Banned: the sore on Larissa's nose is not from the mask, but from the intubation during the pneumonia treatment. In any case, thanks for the tips - I personally use a band-aid, but will try the silicone putty ear plugs as well...!
Ozij: sun bath, in this case is literal. And your google translations plus guesses are superb! Thanks for the help on this, I could really find no time to do that all.
I have met with Gallo and Cláudia, and showed them all of Larissa's stuff. Claudia really had no idea of what a thing a BiPAP was, and was imagining a refrigerator sized thing!!! We had good laughs on that!
Since I was planning to avoid any possible problems with customs, I left the Respironics Bag, manuals and tube with my Regional Director, whom I will meet in Mexico City on the 21st this month, and I will bring it all back here without any problem. I put the BiPAP on my own Respironics Bag, and had a spare tube, so Larissa will be able to use the equipment as soon we deliver it to her (which, by the way, must be around this Tuesday). You will have photos and probably a YouTube post on that. I really want that you all may be able to hear Larissa's voice!
Cláudia will be asking a lawyer friend to prepare a legal document, stating the donation of the BiPAP machine from Mr. Erck to Larissa. This is mainly to avoid the (remote) possibility that the hospital may be tempted to keep the possession of the device. I personally think it could be a 'commodatum' contract, returning the donation to the donor in case of no further need for the device (I really expect that she will not need to be attached to a device for the rest of her life...).
I am trying to plan the next immediate steps - deliver the BiPAP to Larissa's hands is, in fact, the beginning of a long process that we intend to follow carefully...
I am considering printing all this topic's contents, and arrange a meeting between all of us here - me, Gallo, Claudia, and Drs. Silvana & Pedro (the other physician that is taking care of Larissa), and even Dr. Marcia Maria Leonardo, who signed the PSG report. In this way, we could discuss all analysis and questions still unanswered, and forward them to the group, in order to figure out the reasons of Larissa's apneia, if she needs surgery, or the necessary measures for her future.
Secondly, there is the question of her family, of which we do not know much about, and the social and assistive work we need to do with them, in order to be sure that they will be able to carry on with the girl's treatment.
I also would like to say that all of the persons involved in this task have been teaching lots of lessons here, for many health professionals that have had their hearts so hardened with the harshness of the profession, that were skeptic that any good could come from human beings....
Well, now I have to try to get some sleep, life resumes to normal (normal...?!?!?) routine tomorrow....
Ozij & Banned: the sore on Larissa's nose is not from the mask, but from the intubation during the pneumonia treatment. In any case, thanks for the tips - I personally use a band-aid, but will try the silicone putty ear plugs as well...!
Ozij: sun bath, in this case is literal. And your google translations plus guesses are superb! Thanks for the help on this, I could really find no time to do that all.
I have met with Gallo and Cláudia, and showed them all of Larissa's stuff. Claudia really had no idea of what a thing a BiPAP was, and was imagining a refrigerator sized thing!!! We had good laughs on that!
Since I was planning to avoid any possible problems with customs, I left the Respironics Bag, manuals and tube with my Regional Director, whom I will meet in Mexico City on the 21st this month, and I will bring it all back here without any problem. I put the BiPAP on my own Respironics Bag, and had a spare tube, so Larissa will be able to use the equipment as soon we deliver it to her (which, by the way, must be around this Tuesday). You will have photos and probably a YouTube post on that. I really want that you all may be able to hear Larissa's voice!
Cláudia will be asking a lawyer friend to prepare a legal document, stating the donation of the BiPAP machine from Mr. Erck to Larissa. This is mainly to avoid the (remote) possibility that the hospital may be tempted to keep the possession of the device. I personally think it could be a 'commodatum' contract, returning the donation to the donor in case of no further need for the device (I really expect that she will not need to be attached to a device for the rest of her life...).
I am trying to plan the next immediate steps - deliver the BiPAP to Larissa's hands is, in fact, the beginning of a long process that we intend to follow carefully...
I am considering printing all this topic's contents, and arrange a meeting between all of us here - me, Gallo, Claudia, and Drs. Silvana & Pedro (the other physician that is taking care of Larissa), and even Dr. Marcia Maria Leonardo, who signed the PSG report. In this way, we could discuss all analysis and questions still unanswered, and forward them to the group, in order to figure out the reasons of Larissa's apneia, if she needs surgery, or the necessary measures for her future.
Secondly, there is the question of her family, of which we do not know much about, and the social and assistive work we need to do with them, in order to be sure that they will be able to carry on with the girl's treatment.
I also would like to say that all of the persons involved in this task have been teaching lots of lessons here, for many health professionals that have had their hearts so hardened with the harshness of the profession, that were skeptic that any good could come from human beings....
Well, now I have to try to get some sleep, life resumes to normal (normal...?!?!?) routine tomorrow....
_________________
| Mask | |
 |
N. Baumgratz
Belo Horizonte - MG
Brasil
Belo Horizonte - MG
Brasil
Interesting.brazilian wrote: Cláudia will be asking a lawyer friend to prepare a legal document, stating the donation of the BiPAP machine from Mr. Erck to Larissa. This is mainly to avoid the (remote) possibility that the hospital may be tempted to keep the possession of the device. I personally think it could be a 'commodatum' contract, returning the donation to the donor in case of no further need for the device (I really expect that she will not need to be attached to a device for the rest of her life...).
For legal purposes only, the correct characterization of this transaction would be that Banned donated the Respironics BiPAP Auto SV to Brazilian (owner), to be placed in the service of Larrisa for the duration of time that it is of medical necessity, and then to be returned to Brazilian.
The hospital shouldn't have a problem because they have the opportunity to move a potential long-term care patient out of their ICU.
My preference would be that Claudia's attorney prepare a legal document stating that the donation of the Respironics BiPAP Auto SV is to Brazilian (owner), the requestor and custodian of the device, to be used in Larissa's therapy for any and all reasonable time needed, and to be returned to Brazilian (owner) by the hospital or family when it it is no longer deemed a medical necessity in Larissa' care.
My first concern would be to preclude the family from selling the Respironics BiPAP Auto SV in the event it is no longer medically needed for Larissa, and than having an occurrence where Larissa again needed the device.
My second concern would be that there is a warranty period and after warranty service contract in effect for the Respironics BiPAP Auto SV. Currently, Brazilian can forward the unit to me at any time for factory servicing, or replacement. If the unit is donated to the family, that option is lost, and that would be un-fortunate.
My third concern would be required on-going support for the device, when needed. As custodian, Brazilian would be free to request additional masks, tubes, and other supplies that forum members are ready and willing to contribute.
With Brazilian being the owner (custodian) of the Respironics BiPAP Auto SV, there would be nothing to preclude Dra. Silvana, Dra. Claudia, or any other medical professional, requesting the device from him for any medical challenge. The unit can never be sold. And it can be made available for factory servicing, if needed. And he can request additional support. My vote is: Wrtie a legal document that returns the Respironics BiPAP Auto SV to the owner (custodian), Nelson Baumgratz, if it is deemed no longer a medical necessity for Larissa's care.
Banned
Last edited by Banned on Tue May 06, 2008 10:28 pm, edited 2 times in total.
AVAPS: PC AVAPS, EPAP 15, IPAP Min 19, IPAP Max 25, Vt 520ml, BPM 10, Ti 1.8sec, RT 2 (Garage)
BiPAP Auto SV: EPAP 9, IPAP Min 14, IPAP Max 25, BPM 10, Ti 2sec, RT 2 (Travel Machine)
VPAP Adapt SV: EEP 10.4, Min PS 4.4 (Every Day)
Mask: Quattro
BiPAP Auto SV: EPAP 9, IPAP Min 14, IPAP Max 25, BPM 10, Ti 2sec, RT 2 (Travel Machine)
VPAP Adapt SV: EEP 10.4, Min PS 4.4 (Every Day)
Mask: Quattro
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Guest
Running about is what a toddler should be doing. I'm glad to read that.HELLO FRIENDS! Bringing new of our little friend Larissa. She' doing well, and running about all over the children's intensive care unit of the hospital. She is very happy.
A blue kiss on the tip of the nose
CLÁUDA TOLEDO-DR CACAU (CACAU IN BRAZIL means CHOCOLATE).
O.
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Larissa's Circumstances
Dra. Toledo-Cacau, Dra. Silvana Simão, and N. Baumgratz- Our very deepest hope is that Larissa has a loving family to go home to---a family that can take care of Larissa with her special medical needs. Sanctity of any loving family is without question a supreme objective in my own heart.
However, one social reality in all countries is that children are not always fortunate enough to be blessed with adequate family circumstances. If it turns out that Larissa does not have a loving and medically capable family to receive her, then I know of VERY loving family near Chicago who would be extremely interested in adopting Larissa.
This family has been wanting to adopt a younger sister for their biological daughter for nearly three years now. Stranger fairy tales have happened. If unusual luck somehow turned out that this loving family was able to adopt Larissa, then she would come to know me as her "Uncle Steve". Her adoptive father would be a real estate investor and technology developer with a masters degree in electrical engineering. Needless to say Larissa's medical and technology needs would be more than adequately catered to! She would even know that her "Uncle Steve" uses the same kind of medical machine that she does at night.
Our two families are not biologically related. Rather, the two families have been very close friends for nearly twenty-five years now! Again, I truly hope that Larissa already has a loving family who is waiting for her with open arms. However, if this is not the case, then please contact me via a Private Message (PM). I will put this eager and well-qualified family in touch with your case workers for review and consideration as an adoptive family.
That family, including the young daughter, has seen Larissa's pictures and knows her story. They would love to adopt Larissa if, indeed, this little angel in Brazil needs a fairy tale ending.
However, one social reality in all countries is that children are not always fortunate enough to be blessed with adequate family circumstances. If it turns out that Larissa does not have a loving and medically capable family to receive her, then I know of VERY loving family near Chicago who would be extremely interested in adopting Larissa.
This family has been wanting to adopt a younger sister for their biological daughter for nearly three years now. Stranger fairy tales have happened. If unusual luck somehow turned out that this loving family was able to adopt Larissa, then she would come to know me as her "Uncle Steve". Her adoptive father would be a real estate investor and technology developer with a masters degree in electrical engineering. Needless to say Larissa's medical and technology needs would be more than adequately catered to! She would even know that her "Uncle Steve" uses the same kind of medical machine that she does at night.
Our two families are not biologically related. Rather, the two families have been very close friends for nearly twenty-five years now! Again, I truly hope that Larissa already has a loving family who is waiting for her with open arms. However, if this is not the case, then please contact me via a Private Message (PM). I will put this eager and well-qualified family in touch with your case workers for review and consideration as an adoptive family.
That family, including the young daughter, has seen Larissa's pictures and knows her story. They would love to adopt Larissa if, indeed, this little angel in Brazil needs a fairy tale ending.
Delivered!
Friends:
I have to post this quickly, because I am traveling to Rio de Janeiro by bus tonight, in order to get a Mexican visa at the Consulate there, early in the morning tomorrow.
We've been with Larissa today at 5pm, and spent a couple of hours with her, and as you can imagine, she is just the lovely and adorable sweet thing we thought she would be!
She was a little bit shy at the beginning, with so many different people in her room, but after the first hour she was more relaxed, and just went from lap to lap, and distributed kisses and hugs all the way over.
She was very happy with all the new things, played with the buttons of her BiPAP a little, loved the scented oils and colored pad-a-cheeks!
She herself took the BiPAP out of its bag, then put it very carefully inside again in the end, tried one of the masks and felt it very comfortable, and showed everything again to every new person that peeked into her room...
Gallo took lots of pictures, and did almost 40 minutes of image recording, so we will be posting it soon for you all to see and hear her (although she is still a little bit aphonic...) .
I will be offline most of the day tomorrow, since I am not carrying my laptop with me to Rio tonight, but I intend to post a few pictures when I came back home tomorrow night.
Claudia Toledo is in the custody of the BiPAP today, and we will assemble a meeting with the doctors and Larissa's mother (which happened to be there with us today), for the formal delivery of the BiPAP.
SWS (Uncle Steve!): We still do not have clear information about Larissa's family, but we will get it asap... Then we all will find ways to assure Larissa the fairy tale ending we want her to have! And I wish all blessings to you and this family also!
I have to post this quickly, because I am traveling to Rio de Janeiro by bus tonight, in order to get a Mexican visa at the Consulate there, early in the morning tomorrow.
We've been with Larissa today at 5pm, and spent a couple of hours with her, and as you can imagine, she is just the lovely and adorable sweet thing we thought she would be!
She was a little bit shy at the beginning, with so many different people in her room, but after the first hour she was more relaxed, and just went from lap to lap, and distributed kisses and hugs all the way over.
She was very happy with all the new things, played with the buttons of her BiPAP a little, loved the scented oils and colored pad-a-cheeks!
She herself took the BiPAP out of its bag, then put it very carefully inside again in the end, tried one of the masks and felt it very comfortable, and showed everything again to every new person that peeked into her room...
Gallo took lots of pictures, and did almost 40 minutes of image recording, so we will be posting it soon for you all to see and hear her (although she is still a little bit aphonic...) .
I will be offline most of the day tomorrow, since I am not carrying my laptop with me to Rio tonight, but I intend to post a few pictures when I came back home tomorrow night.
Claudia Toledo is in the custody of the BiPAP today, and we will assemble a meeting with the doctors and Larissa's mother (which happened to be there with us today), for the formal delivery of the BiPAP.
SWS (Uncle Steve!): We still do not have clear information about Larissa's family, but we will get it asap... Then we all will find ways to assure Larissa the fairy tale ending we want her to have! And I wish all blessings to you and this family also!
_________________
| Mask | |
|
N. Baumgratz
Belo Horizonte - MG
Brasil
Belo Horizonte - MG
Brasil
Very good, Brazilian! Any genuinely good outcome for Larissa is truly what we all hope for! And she is so very lucky to have you and other good souls batting for her.
Should anyone in Brazil wish, I will put this very good family in touch! Regardless of how this turns out, many of us are extremely grateful that you are helping to look after Larissa's best interest.
You are already "Sir Brazilian" in my eyes!!!
Should anyone in Brazil wish, I will put this very good family in touch! Regardless of how this turns out, many of us are extremely grateful that you are helping to look after Larissa's best interest.
You are already "Sir Brazilian" in my eyes!!!
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Guest
Olá !
Hoje Larissa conheceu pessoalmente seu aparelho.Apesar de não entender tudo o que realmente estava acontecendo se sentiu feliz.Abraçou ,beijou o Nelson e o Galo ,dra Cacau.Ela nos recebeu um pouco tímida mas com grande carinho.A mamãe da Larissa também participou,juntamento com a enfermagem que estava de plantão e um de seus médicos Dr.Pedro.O momento foi muito especial,regado de emoção,alegria e o mais importante o AMOR.UM AMOR INCONDICIONAL E SEM DIMENSÕES.Hoje Larissa faz parte de minha vida e de todos nós que convivemos com ela todo este tempo.Larissa tem uma irmazinha mais velha do que ela, que esta lhe esperando ansiosamente em sua casa juntamente com seus avós maternos.OBRIGADA por todo carinho e atenção.Continuarei a mandar notícias de Larissa.Um beijo azul na ponta do nariz.
cláudia Toledo
Hoje Larissa conheceu pessoalmente seu aparelho.Apesar de não entender tudo o que realmente estava acontecendo se sentiu feliz.Abraçou ,beijou o Nelson e o Galo ,dra Cacau.Ela nos recebeu um pouco tímida mas com grande carinho.A mamãe da Larissa também participou,juntamento com a enfermagem que estava de plantão e um de seus médicos Dr.Pedro.O momento foi muito especial,regado de emoção,alegria e o mais importante o AMOR.UM AMOR INCONDICIONAL E SEM DIMENSÕES.Hoje Larissa faz parte de minha vida e de todos nós que convivemos com ela todo este tempo.Larissa tem uma irmazinha mais velha do que ela, que esta lhe esperando ansiosamente em sua casa juntamente com seus avós maternos.OBRIGADA por todo carinho e atenção.Continuarei a mandar notícias de Larissa.Um beijo azul na ponta do nariz.
cláudia Toledo