Little Larissa - please read

Banned · Post by **Banned** » Thu May 01, 2008 9:32 pm

mineiro wrote:Larissa case got publicity in the forum and I so glad with everybody.

Nelson is a good man and had a generous attitude to put this problem here, and ask for help.

Hug´s to all.

Hi Gallo,

Thank you for your kind words. The machine is from all of us, to Larissa.

Since Brazilian's initial post on this thread Larissa has been in all of our hearts and prayers. I have received donations from all over the world, so Larissa's challenges have had a global reach. Larissa afforded me the opportunity to get the ball rolling because I'm one of the few people in the USA who has a doctor's prescription to order a BiPAP SV machine.

Brazilian made it easy because while attaching the Doctor's summary of Larissa's history so we all could make our own assessment, he specifically never asked for the machine they really needed. He simply asked for a used CPAP machine with a specific option.

You have a nice friend in Brazilian. I'm sure Larissa is loving her TV. That is a wonderful gesture on your part. We know she will love you both, along with allot of new warm-hearted friends like Claudia who will become an immediate part of her life.

We all look forward to taking that journey with you and getting updated occasionally on Brazilian's thread.

We're all here for all of you and Larissa. And we'll line up behind you for Larissa's kiss on the tip of our nose.

Your friend,
Banned

Guest · Post by **Guest** » Thu May 01, 2008 9:46 pm

Olá BANNED!Meu nome é Cláudia Toledo moro no Brasil no estado de Minas Gerais na Cidade de Belo Horizonte.Sou amiga de Brazillian (Nelson).Aqui faço um trabalho de humanização em alguns hospitais com as crianças internadas.Sou uma palhaça médica utilizo a linha de PATCH ADAMS em minhas visitas .O doutor palhaço enxerga o ser humano por dentro e a medicina nunca será completa enquanto não juntarmos o lado de fora com o lado de dentro e portanto você ter uma visão integral do ser humano.Eu acredito em lhe dar com o lado invisivel da realidade.O hospital é um ambiente esteril,mas ele precisa ser esteril no ponto de vista bacteriologico e não do ponto de vista sentimental.Sendo uma palhaça médica eu aprendi a dimencionar assim o que é dor e o que é perda.Que para morrer basta estar vivo e aprendi a me divertir bastante com quase nada.Muitas vezes agente ouve mas não escuta,vê mas não enxerga.Eu vejo que meu trabalho traz isso muito pra gente.Faço visitas semanais continuas e levo comigo e tambem deixo a lembrança de momentos que vão tornar aquele encontro imortal.Faço este trabalho com a pequena LARISSA e posso relatar melhoras supreendentes.Nos ultimos dias ela esteve um pouco deprimida então passei a fazer visitas diárias para anima-lá e o resultado foi muito bom.Tenho conversado com ela sobre o aparelho que ganhou e a possibilidade dela ir embora para sua casa o que tem a deixado muito feliz.Estamos felizes tambem e ao mesmo tempo triste pois deixaremos de ver a LARISSA todos os dias como é de nosso costume então sentiremos muita saudade dela com toda certeza. Mas sabemos que ela vai estar bem e com sua família o que realmente é muito importante.LARISSA e uma criança muito especial e diferente das crianças de sua idade.Ela conhece seu problema e sabe relatar com clareza para as pessoas que a questiona o porque dela estar ali morando dentro de um CTI já há bastante tempo.Agradeço a você e a todos que de maneira direta ou indireta participaram desta tão nobre atitude.Obrigada de coração.Um beijo azul na ponta do nariz da DRA.CACAU(PALHAÇA).
Que DEUS lhe guarde e lhe proteja.
De sua mais nova amiga CLÁUDIA TOLEDO do Brasil
claudiatoledo2@ig.com.br

Guest · Post by **Guest** » Thu May 01, 2008 9:52 pm

Above Post Text-Translated Using Google wrote:Hello BANNED! My name is Claudia Toledo live in Brazil in the state of Minas Gerais in the city of Belo Horizonte. I am a friend of Brazillian (Nelson). Here I make a humanization of work in some hospitals with hospitalized children. I am a medical palhaça use the line of PATCH ADAMS in my visits. The clown doctor see the human being inside and medicine will never be complete until we add the side out with the side from within and so you have an integral vision of man. I believe in giving him with the invisible hand of reality. The hospital is a sterile environment, but it needs to be sterile in bacteriological point of view and not from a sentimental. As a medical palhaça I learned to dimencionar so that pain is and what is lost. What to die simply being alive and I learned a very fun times with almost nada.Muitas agent listening but not listening, but sees not see. I see that my work brings people get this far. I weekly visits and continuous, and also let me take the memory of moments that will make that meeting imortal.Faço this work with the small LARISSA and I can report improvements surprising. In recent days she was a little depressed then spent to make daily visits to animates there-and the result was very good. I have talked with her about the unit that won and the possibility of it go to his house which has left very happy. We are also happy and sad at the same time as it will to see LARISSA every day as is our custom feel so much nostalgia that with all certainty. But we know that it vai be well with your family and what really is important. LARISSA child and a very special and different from children of their age. She knows her knows problem and report clearly to people that the questions because it is there living within a CTI has for some time. I thank you and all that so directly or indirectly participated in this noble atitude.Obrigada of heart. A blue kiss the tip of the nose of the DRA. COCOA (PALHAÇA).
Let God save you and protect you.
From its new CLÁUDIA TOLEDO friend of Brazil
claudiatoledo2@ig.com.br

-SWS · Post by **-SWS** » Thu May 01, 2008 10:01 pm

Banned wrote:
-SWS wrote: Banned, is that email address also a PayPal account where we can send contributions toward Larissa's BiPAP autoSV?
Correct. The email address would also be my PP Account.

A woman named Karen who owns Pad-a-Cheeks sent a couple of pairs of kid-colored Pad-a Cheeks to Brazilian and offered a donation. As did RG, and Jen, and many others.

Tell you what, all donations graciously accepted on Brazilian's (Nelson Baumgratz) and Larissa's behalf, and thanks and blessings to you all!

Banned
daviderck@sbcglobal.net
or (snailmail)
10730 Maxine Ave.
Cupertino, CA. 95014

I wanted to bump the above post here as well, so that others can continue to help out with donations. And I'll place Larissa's picture here just one more time since kind-hearted people from all over the world have rallied in this thread on her behalf!

That little gal seems to rule our hearts! And that's the way it should be! Go, Larissa! Go!! Spread your tiny wings and fly away home!!!

ozij · Post by **ozij** » Fri May 02, 2008 2:10 am

Hello BANNED!
My name is Claudia Toledo an I live in Brazil in the state of Minas Gerais in the city of Belo Horizonte. I am a friend of Brazillian (Nelson). Here I work in humanization of hospitals for hostpitalized children. I am a medical (female) clown use the line of PATCH ADAMS in my visits. The clown doctor sees the human being inside and medicine will never be complete until we add the side out with the side from within and so you have an integral vision of man. I believe in giving him with the invisible hand of reality. The hospital is a sterile environment, but it needs to be sterile in bacteriological point of view and not from an emotional one. As a clown- doctor I learned to dimencionar (distinguish?) what pain is and what is loss. That, to die simply, be alive and learn to have fun rather with almost nothing. Many times we hear but do not listen, look and do not see. I see that my work brings much to people. I make weekly visits and continuous, and also let me take the memory of moments that will make that meeting immortal. I work with this little LARISSA and I can report improvements surprising. In recent days she was a little depressed then I tried to make daily visits to animate her and the result was very good. I have talked with her about the unit that will gain her the possibility of going to her home which has made her very happy. We are also happy, and sad at the same time as we will no loger see LARISSA every day as is our custom - we will miss her a lot, that's for sure. But we know that she will be well with her family and that's what really is important.

LARISSA is a very special child, different from children her age. She knows her problem and answer clearly people that ask her why she has been living within a intensive care unit for so long. (<-- guessing this is what Claudia means. O.) I thank you and all that so directly or indirectly participated in this noble attitude. Thanks from the heart. A blue kiss on the tip of the nose from Doctora. CACAU (CLOWN).
May God save you and protect you.
From your new friend in Brazil CLÁUDIA TOLEDO

Once again, google translator + guesses.

O.

dsm · Post by **dsm** » Fri May 02, 2008 3:59 am

Ozij,

Your guess are delightful - I trust they are pretty well to the mark

DSM

ozij · Post by **ozij** » Fri May 02, 2008 5:05 am

Thanks, dsm. I love languages - and when I couldn't find palhaça - I tried "clown" from English to Pourtuguese, and got palhaço. So that was easy. English doesn't distiguish "clown" from "clowness" - which is why google translator was stupid about it, but other laguages sure do distiguish. I was well into the translation, thinking of Italian words I know from opera librettos (e.g. the Dotoressa Marcelina in Figaro's wedding) when I remembered "I Paglliaci" = "The Clowns"....

With a medical clown who knows the child in person other things fell into place e.g. DRA - which is probably Doutora = Doctoress; as well as those mysterious blue kisses on the tip of the nose

By the way, Claudia's heatfelt thanks are no guess - I inserted a blank before "Obrigada" and google caught on immediately... I was much obliged (obrigada...) to it.

They have medical clowning in Israel too.

O.

odawa · Post by **odawa** » Fri May 02, 2008 9:03 am

Hello all
Does the little girl still need supplies? I have an abundance of the long hose that I can send to her. Which mask is she using?

-SWS · Post by **-SWS** » Fri May 02, 2008 9:17 am

According to the clinician's manual the BiPAP autoSV was designed to use a 6-foot smooth bore CPAP hose (not internally ribbed or corrugated unfortunately). And I know we talked about which pediatric mask she might use. But did we discover the answer to that question?

Perhaps we can also address which pediatric mask size(s) she will need soon. She is a quickly growing child!

I was also wondering about whether Larissa may eventually need a heated humidifier. I personally can't tolerate heated humidification. But quite a few people require heated humidification to even tolerate their PAP therapy.

Guest · Post by **Guest** » Fri May 02, 2008 10:49 am

Hi, friends!

I have just finished my training here in Virginia (and finally we had a sunny day here - is has been surprisingly chilly here for this time of the year).

I have tons of mails to read, and lots of work to catch up, since this training disturbed my agenda a little bit, but this is the first thing I want to do: say hello to you, and express my gratitude for all your support. I leave tonight at around 9pm, and expect to be in Belo Horizonte around 2pm tomorrow.

As soon as I arrive, I will contact Claudia Toledo (Dra. Cacau Clown), who is the person that started all of this, telling me then Larissa's story! She one of the kindest and greatest hearts I've known - among that many others that I know now from this forum!

Then we will arrange with Dra. Silvana to deliver everything to Larissa, and finally have the opportunity to meet her in person. Gallo will provide pictures and films, so you all will be able to see and hear our little angel.

I inform that I have received Karen's Pad-a-Cheeks, many thanks for that!

Blessing to all!

Banned · Post by **Banned** » Fri May 02, 2008 2:12 pm

-SWS wrote:According to the clinician's manual the BiPAP autoSV was designed to use a 6-foot smooth bore CPAP hose (not internally ribbed or corrugated unfortunately). And I know we talked about which pediatric mask she might use. But did we discover the answer to that question?

Perhaps we can also address which pediatric mask size(s) she will need soon. She is a quickly growing child!

I was also wondering about whether Larissa may eventually need a heated humidifier. I personally can't tolerate heated humidification. But quite a few people require heated humidification to even tolerate their PAP therapy.

odawa and sws-

The 6 foot ribbed/corrugated hose is supplied as a part of the Respironics BiPAP Auto SV kit. I don't think any company delivers a smooth hose with their machines.

The masks Brazilian will deliver are a F&P Flexfit 406 which is the 'petite' version of the Flexfit 407. The other mask is a ResMed Mirage Kidsta small. The medical team will have to check them both carefully for proper fit and advide Brazilian if which one, if any, works. Otherwise, as SAG, suggested, get the name of the current mask she is wearing if it works better than the two new ones.

The Heated Humidifier is a question that Brazilian could best answer. I have no idea if a Heated Humidifier would be necessary in the tropics?

Brazilian and Dra. Cacau Clown-

Three things when you get time:

1) Please try and get the name and model number of the vent that Larissa has been using for the last month.

2) Please try and get the name of the mask that Larissa has been using

3) Since nothing in life is free, there is a way the family can pay us back. A child on a vent with smokers lighting-up in the home (whether they be immediately family or visiting friends) is a terrible thing. Nobody is making any assumptions about smoking, other than it is devastating to equipment and a child using the BiPAP device (the child living in the smoke filled confines of the machine that can never be cleaned). If you could ask Dra. Silvana, to convey this message to the family, as she wishes, we will consider payment in full..

Have a good trip home, my friend,
Banned[/b]

brazilian · Post by **brazilian** » Fri May 02, 2008 2:26 pm

Banned:

... rushing to the airport... here it goes:

Mask: Respironics Confort Classic

Vent: Savina - Dräger, CPAP mode, ( PS=15 PEEP=5 Fi02 =0,3 (30%))

In our town (in the mountains) a humidifier may not be mandatory.

rgrds

dsm · Post by **dsm** » Fri May 02, 2008 4:00 pm

Banned,

The Bipap AutoSV std kit usually contains an integrated H/H. If this was a special deal they may have removed it to help lower costs.

I can send a new integrated H/H if one is needed.

Cheers

DSM

#2 The bit I won't have is the special power cable that allows the H/H to be plugged into the mains power. On a normal Remstar this power cable is not needed as the power connects to the H/H which then has a short power lead that plus into the Remstar. On the Bipaps there is a special power pack & the H/H has nowhere to plug into the main unit so requires a special power cable from Respironics, that allows the H/H to plug directly into the mains soxket. I am assuming to that Brazil uses the same power sockets as the US (110-120 VAC two pin plug) we don't use those here in Australia.

This powercord would be about $US10 or so there in the US.

D

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): bipap

Banned · Post by **Banned** » Fri May 02, 2008 6:53 pm

brazilian wrote: In our town (in the mountains) a humidifier may not be mandatory.

That's a thought, dsm. But, if I had seen a Respironics Heated Humidifier in the kit, I probably would have removed it. With young children, possible a young sister or brother, or neighbor's children taking a look, it maybe tough enough for her parents to keep paper (pom-poms), paper clips, and coins out of the holes in the machine, let alone a water source that could back up into the machine. The F&P 150 could be a safer choice.

I don't think Brazil uses the same power sockets as the US.

We should get dilfo to give up his source for those economical BiPAP Auto SVs that he says he can purchase in Colorado. His source must be selling the machine at, or below cost.

Banned

-SWS · Post by **-SWS** » Fri May 02, 2008 7:33 pm

Banned wrote: The 6 foot ribbed/corrugated hose is supplied as a part of the Respironics BiPAP Auto SV kit. I don't think any company delivers a smooth hose with their machines.

Thanks, Banned. Respironics probably changed that hose spec for the better.

BiPAP autoSV Clinician's Manual Published Waaaaay Back on 6/10/2005 wrote:"The BiPAP autoSV automatically compensates for pressure drops associated with a 6-foot smooth bore tube and bacteria filter."

And the picture at the beginning of that manual shows the original form-factor BiPAP autoSV model. I think that older model may have had a white or light gray housing. It wasn't the classic tank model.

So much for old documentation!

Little Larissa - please read

Re: Larrisa

Re: Silvana Still Needs To Pick...

current mask and vent

Re: current mask and vent

Mask