Little Larissa - please read

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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dsm
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Re: Little Larissa - please read

Post by dsm » Wed Sep 03, 2008 4:00 pm

Banned wrote:
dsm wrote: I can actually tune my Tidal Volume by adjusting the IpapMAX setting. I think (I'll need to check) that
I have been able to vary it in the vacinity of 15% or thereabouts.
If you can find a way to tweak 15% more Average Tidal Volume out of an BiPAP Auto SV, let me know. More importantly, let Laryssa's doctor's know!

Banned
Banned,

Laryssa is on the borderline of reliable measurement with these machines. She breathes like a mouse - tiny breaths & rapidly.

In a way, we are trying to solve issues for her that the machines weren't really designed for but amount to the best we have. As
has been said before, the expectation & hope is she grows rapidly & into the range that the machine & its data are better able
to do the job.

I am no more convinced that a Synchrony will help her up any better than a Bipap Auto SV. But again - am no expert on the
intricacies of pediatric respiratory complications.

How'd last night go with the AVAPS ?

DSM
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brazilian
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Flashing News!!!!!

Post by brazilian » Tue Oct 14, 2008 6:47 pm

Laryssa is finally home!

It's been 2 weeks now that Laryssa left the hospital and went home with her mother!
She was scheduled to leave mid-September, but the oximeter that the hospital would lend her needed to go through maintenance, and there was also the no-break subject, which was resolved by Dr. Vergara himself.

I do not have many details at this moment, since lately I could not have as much contact with her as I wished, due to my own personal affairs, but I will try to satisfy everybody's curiosity as much as possible.

She now lives in a nearby town, called 'Pedro Leopoldo', about 40km from Belo Horizonte, near our International Airport (Confins). This is the link for the town's site: http://www.cidadesmineiras.com.br/pedro ... opoldo.htm

And this is the link for Laryssa's neighbourhood (by my guess, only...): http://maps.google.com/maps?f=q&hl=en&g ... 36178&z=15

If you zoom the map, you may see a lagoon, called 'Lagoa de Santo Antonio', which the neighbourhood where she lives now.

I was told by Vera, the Social Assistant, that the house is good and clean, though humble, and she was very glad to find that conditions were very satisfatory for Laryssa.There is a Family Health Service Station nearby, and also a Nursery where Laryssa now spends her mornings, in order to allow some rest for her mother.

Laryssa's moving out of the hospital was like a war campaign preparation: there were dozens of people involved, many reunions and lots of training, until they finally released her.

First, the hospital's social assistant made contact with Pedro Leopoldo's "Conselho Tutelar" (a public council, which exists in every town in Brasil, that oversees children and teenagers matters, like adoptions, abandon, abuse etc). I was present at the first meeting with them, in the end of August, when Laryssa's case was presented to them, and they were convoked to join efforts in order to allow her move.

Then, the Conselho Tutelar contacted the Family Health Service Station, and also investigated the Nursery conditions. After that, the hospital, through Dr. Vergara, trained people from the Family Health Service Station and the Nursery, about Laryssa's condition and also about the BiPap operation.
Finally, when the oximeter arrived from the maintenance, and the no-break was ready, she went home.

She will return briefly to the hospital this week for an thourough medical examination. Altough she lives with her mother, and under her mother's care, the hospital will keep on monitoring her continuously, also health conditions as her mother's care of her as well.

She is in very good health condition, and very happy to be out of the hospital (although she was not unhappy there, where she received lots of love and care from so many different people). These same people have been visiting her at home - nurses, technicians, service people, and they all tell she is very happy, and had adapted very well to her new life, going every day to the nursery and playing with other healthy children.

When I return home I intend to visit next week (I am in Monterrey, Mexico, during this week), and will give her the picture of CpapTalk's forum people (and if you want your picture included, please send a PM this week), and also will provide recent photos of our Little Princess.

I think that something that seemed so impossible or distant just a few months ago - allowing a beautiful, clever and gentle girl, forced to live her very early years almost locked inside an ICU room, to go home and lead a normal life - became a dream come through because there is people all over the world that knows that love - the feeling, and love translated in actions can make the difference. I could not say only "thank you" to you guys, this is one of those moments when we discover we have not words enough to express all that we feel...

Of course the story is not over, and I (and also I dare say, you all as well) am deeply bonded by the heart to this girl, and we will be in touch as much as possible.

As Dra. Cacau would say, "Blue kisses on the tip of the nose to you all...!"

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dsm
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Re: Little Larissa - please read

Post by dsm » Tue Oct 14, 2008 7:07 pm

Brazilian,

Many many thanks for the update and the good news. I am sure there are many people eager to hear how this story is unfolding.
A couple of us were talking a little about Laryssa last week & wondering how she was progressing.

Again congratulations for instigating this whole process leading up to this happy event. My prayers will remain with Laryssa and
her family that her life back at home moves forward smoothly.

I guess Dra Cacau (Claudia) will be very sad to lose her little princess. Please pass on to her my kind thoughts and commiserations
at her loss.

Cheers & again thanks

DSM
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sleepycarol
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Re: Little Larissa - please read

Post by sleepycarol » Tue Oct 14, 2008 7:29 pm

I was thinking of Larissa yesterday and was wondering how she was doing.

Thank you so much for the update. Please continue to update us as you have the time.

I appreciate you keeping us posted!!

Give Larissa a kiss from all of us.
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I am not a doctor or other health care professional. Comments reflect my own personal experiences and opinions.

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rested gal
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Re: Little Larissa - please read

Post by rested gal » Tue Oct 14, 2008 10:14 pm

Thank you so very much for the update, Brazilian! Glad to hear the transition home is going well so far.

That's one lucky little girl to have had you bring her situation to the attention of cpaptalk. A big thanks again to Banned for all he did to get her a good machine!

So happy to hear there are many good people down there who will be watching over her. I hope she does very well from here on!
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-SWS
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Re: Little Larissa - please read

Post by -SWS » Wed Oct 15, 2008 3:32 am

Ola, Nelson! Thanks so much for the extremely encouraging update.

I am most impressed with the love and care all the kind people in Brazil have so generously provided for our little princess. Please give Laryssa our heartfelt best wishes and love. And thank you for continuing to be her knight in shining armor!!!

Take care, my friend!

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ozij
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Re: Little Larissa - please read

Post by ozij » Wed Oct 15, 2008 10:22 am

...going every day to the nursery and playing with other healthy children.


O.

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echo
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Re: Little Larissa - please read

Post by echo » Wed Oct 15, 2008 4:41 pm

Brazilian - thanks for the update! That is really so wonderful to hear about Laryssa ! Your update brought tears to my eyes again - she is one lucky little girl
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claudia Toledo - Dra Cacau

Re: Little Larissa - please read

Post by claudia Toledo - Dra Cacau » Sun Nov 09, 2008 6:44 pm

Olá amigos!
Quanto tempo,estava com saudades.Aqui no Brasil estamos todos bem apesar do calor intenso.Tive notícias de Larissa pelo seu pediatra,nos encontramos nos corredores do hospital.Assim que obter notícias novas envio.Um beijo azul em todos vocês.

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dsm
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Re: Little Larissa - please read

Post by dsm » Sun Nov 09, 2008 7:45 pm

claudia Toledo - Dra Cacau wrote:Olá amigos!
Quanto tempo,estava com saudades.Aqui no Brasil estamos todos bem apesar do calor intenso.Tive notícias de Larissa pelo seu pediatra,nos encontramos nos corredores do hospital.Assim que obter notícias novas envio.Um beijo azul em todos vocês.

Ozij did a really good translation see below ...
(removed mine).

DSM
Last edited by dsm on Sun Nov 09, 2008 11:54 pm, edited 4 times in total.
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bdp522
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Re: Little Larissa - please read

Post by bdp522 » Sun Nov 09, 2008 7:51 pm

Thank you, Claudia, for thinking to keep us updated. I love to hear about little Larissa and how she is doing! I think of her often and have been wondering how she's doing.

Brenda

PS Thanks for the translation Doug, I was trying to figure it out and failing miserably!

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ozij
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Re: Little Larissa - please read

Post by ozij » Sun Nov 09, 2008 9:14 pm

Hello friends!
It been a long, I missed you. Here in Brazil we are all well despite the intense heat. I had news of Larissa through her pediatrician, we met in the hospital corridors. Once we get new information I'll send it. A blue kiss to all of you.
O.

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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.
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claudiatoledo2@ig.com.br

Re: Little Larissa - please read

Post by claudiatoledo2@ig.com.br » Sat Nov 15, 2008 4:26 pm

Olá amigos!
Estive quinta feira passada dia 13 de novembro na casa de Larissa juntamente com Nelson .Ela está
bem se recuperando de uma sinusite,teve uma demora na administração do medicamento em função de não terem o dinheiro para adquirir o remédio mas agora já esta tudo resolvido . A casa é simples mas confortavel,bem espaçosa,tem quintal algumas arvores,se localiza em uma area rural,interior.
Larissa tem umas galinhas mas morre de medo delas não chega nem perto.
Percebi que ela esta bem,cresceu,continua muito falante,faz muitas perguntas.
Ela tem tido um acompanhamento semanal de uma pediatra da cidade de Pedro Leopoldo Dra.Sarah.
Bom está tudo tranquilo,assim que tiver outras notícias conto pra vocês.
Um beijo azul na ponta do nariz
Dra.Cacau

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dsm
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Re: Little Larissa - please read

Post by dsm » Sat Nov 15, 2008 9:09 pm

claudiatoledo2@ig.com.br wrote:Olá amigos!
Estive quinta feira passada dia 13 de novembro na casa de Larissa juntamente com Nelson .Ela está
bem se recuperando de uma sinusite,teve uma demora na administração do medicamento em função de não terem o dinheiro para adquirir o remédio mas agora já esta tudo resolvido . A casa é simples mas confortavel,bem espaçosa,tem quintal algumas arvores,se localiza em uma area rural,interior.
Larissa tem umas galinhas mas morre de medo delas não chega nem perto.
Percebi que ela esta bem,cresceu,continua muito falante,faz muitas perguntas.
Ela tem tido um acompanhamento semanal de uma pediatra da cidade de Pedro Leopoldo Dra.Sarah.
Bom está tudo tranquilo,assim que tiver outras notícias conto pra vocês.
Um beijo azul na ponta do nariz
Dra.Cacau

My quick and rough translation (am sure Ozij will do a really good one )

Nelson visted Laryssa's house on the 13 of Nov. She is well but
recovering from sinusitis. Her recovery was slowed because they
couldn't afford the right medicine.

The house is simple but comfortable and roomy. It has a yard with
trees and is located in a rural area. Laryssa has hens but she
is deadly afraid of them them and won't go near them.

Laryssa seems to be doing well, has lots of questions. She is
visited weekly by pediatritian Dr Sarah from a city called 'Peter
Leopoldo'.
#3 [revised this line DSM]
Things have been quiet but you now have more news about Laryssa.

A kiss on the tip of your noses

Dra Cacau

Just to add a comment, many many years ago my wife & I took in a foster child aged 4 - he had only ever lived in children's institutions & he had never seen a dog. When he came to stay with us and our other children, he was terrified of our dog & wouldn't go near it. Doug.
Last edited by dsm on Sun Nov 16, 2008 5:11 pm, edited 4 times in total.
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ozij
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Re: Little Larissa - please read

Post by ozij » Sat Nov 15, 2008 10:15 pm


Google's version and my guesses:
Hello friends!
Thursday last, on Nov. 13 i was at the home of Larissa along with Nelson. She is recovering well from a sinusitis, had a delay in the administration of the drug in light of not having the money to buy the medicine but now this is all resolved. The house is simple but comfortable and spacious, has some backyard trees, is located in a rural area, in the interior.
Laryssa has some chickens but she is deadly afraid of them them and won't go near them [that sentence from Doug's translation].
I notices that she is well, has grown, remains very talkative, and has many questions.
She has had a weekly monitoring by a pediatrician in the city of Pedro Leopoldo, Dr. Sarah.
Well everything is quiet, [or: Good that everything is quiet(?)] As soon as we have more news we will pass it on [Doug's again].

A kiss blue on the tip of the nose
Dra.Cacau


Thanks for the update, Claudia!
O.

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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