Noutati/News

28 Noiembrie 2010

 Dragii nostri, am ajuns in ajunul zilei  de 29 Noiembrie, o zi care in viata unui pui de om va insemna practic toata viata sa. In cateva ore va incepe operatia de transplant de ficat. Asa cum scrie pe blog,  Simona il va naste a doua oara pe puiul ei iubit. Sa fim alaturi de ei cu ganduri pozitive, speranta si rugaciune. Va multumim din suflet tuturor care ne-ati fost aproape. Multumim oamenilor minunati  care au inteles ca Siluan a avut nevoie de ajutor. 

Pe blogul lui Siluan: http://bebesiluan.wordpress.com/ puteti vedea imagini  noi de la Hanovra, unde toti sunt pregatiti si asteapta ca totul sa se termine cu bine.

Cu  GANDURI POZITIVE , SPERANTA , RUGACIUNE ..

DOAMNE  AJUTA !

Mass-media

16 Septembrie

Trinitas TV:

Acasa TV – Povestiri Adevarate:

14 Septembrie la Stirile ProTv

26 August

Noutati despre Siluan povestite de mamica lui

“In urma deciziei luate de echipa medicala de la Spitalul din Hanovra (Prof.Dr.Ulrich Baumann, Prof.Dr.Jochen Ehrich, Dr.Kai-Peter Schubert, Prof.Dr.Lehnar, Dr.Phfister si Dr.Richter) in seara zilei de 25 august ne-am intors acasa impreuna cu Siluan pentru o perioada de 2 luni si jumatate. In aceasta perioada, printr-un ritm de viata adecvat si printr-un tratament voi putea fi donatoare pentru transplantul ce urmeaza a se face.

Va fi o perioada importanta atat pentru mine, cat si pentru Siluan. In aceste 2 luni si jumatate Siluan isi va primi tot tratamentul stabilit de doctorii din Hanovra si nadajduim ca in data de 16 noiembrie sa revenim la spital si cat mai curand sa aiba loc transplantul! Starea lui Siluan este stationara in urma tratamentului primit si orice posibila detriorare a starii lui de sanatate ne va pune in situatia de a pleca urgent la Hanovra.

Multumim Bunului Dumnezeu si tuturor celor care ne-au ajutat!”

News about Siluan told by his mother

“After the medical team from Hanover (Prof.Dr.Ulrich Baumann, Prof.Dr.Jochen Ehrich, Dr.Kai-Peter Schubert, Prof.Dr.Lehnar, Dr.Phfister si Dr.Richter) made their decision, on the night of 25th August we arrived home together with Siluan for the next two months and a half. During this time I will follow a treatment and an adequate life style, so that I’ll be able to be the donor for the transplant.

The following period of time is very important for me, as well as for Siluan. During these two months and a half, Siluan will follow the treatment prescribed by the doctors from Hanover and we hope that on 16th of November we will be back to the hospital in order to do the transplant! Siluan’s situation is stable now, thanks to the treatment, and if anything bad happens we will urgently go to Hanover.

We thank God and everybody who helped us! God bless you!”

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18 August

Doctorii de la Spitalul din Hanovra au hotarit ca mama belusului Siluan, Simona, nu poate dona ficatul decit daca va urma trei luni de tratament. Numai dupa aceea, se va putea face transplantul. Momentan starea lui Siluan este stabila. Va mai ramine internat 2 saptamini, ca sa continue tratamentul cu Ganciclovir. Apoi, poate veni acasa. Aici trebuie sa fie supravegheat de un spital si de un doctor - care sa fie in permanenta legatura cu Spitalul din Hanovra, pentru a i se da medicamentatia necesara supravietuirii lui. Va trebui sa fie controlat la fiecare 3 zile, iar in caz de urgenta, va trebui transportat pina in Hanovra.

De asemenea, doctorul care se ocupa de acest caz, a tinut sa precizeze ca Spitalul din Hanovra a rezolvat 600 de cazuri din 600 de interventii de transplant.

O alta veste rea este faptul ca Romania nu face parte din Eurotransplant, ceea ce inseamna ca cetatenii romani nu pot beneficia de acest serviciu medical in tarile membre ale Uniunii Europene, adica nu se poate apela la banca de organe pentru a se gasi un ficat compatibil.

Doctors from Hanover have decided that the baby’s mother, Simona, can be the donor only after 3 months of treatment, because her liver isn’t healthy enough for the transplant. At the moment Siluan’s condition is stable. He will remain hospitalized for two more weeks, so he can continue the Ganciclovir treatment. After that they will return to Romania. There he has to be under permanent supervision by a hospital and a doctor, who has to report everything to the hospital in Hanover, and receive from there all the indications regarding Siluan’s medication in order to survive. Every three days they have to check him up, and in case of emergency he has to be transported to Hanover.

Also, the doctor who is in charge of his case, wanted to clarify that the Hanover Hospital has solved 600 cases out of 600 transplant surgeries.

Another bad news is the fact that Romania isn’t a part of the Eurotransplant program, which means that the Romanian citizens are not eligible for this medical service in EU countries, so they can’t request a compatible liver from the organ bank.

16 August

Doctorii au hotarat: Simona va fi donatoarea!Maine va face biopsia! Speram ca odata cu ficatul si dragostea ei nemarginita il va salva pe Siluan!

The doctors have decided: Simona will be the donor! Tomorrow she will do the biopsy! We hope that her liver and her endless love will save Siluan!

15 August

Siluan are sonda in stomac pentru ca nu mai vroia sa bea lapte si a slabit mult. Laptele pe care il bea acum este special pentru ficat si are un gust oribil. Are de luat 18 medicamente pe zi, plus antibioticele si Ganciclovirul, noaptea nu poate dormi, iar ziua este foarte agitat!

Siluan has a NG tube to help him drink the milk, because he refused to feed. The milk he used to have was changed by a new one that is specific for the liver, and which has a very horrible taste. He has to take 18 drugs/day, plus the antibiotics and Ganciclovir, he can’t sleep during the night, and during the day he is very nervous!

13 August

Siluan este destul de grav, a facut febra datorita reactivarii CMV-ului. Acest lucru poate complica destul de mult lucrurile deoarece exista un mare risc de infectie al grefei (ficatului nou) dupa transplant. De aceea, dupa transplant bebe va face minim 3 luni de tratament cu Ganciclovir (care e destul de toxic, si e si ala ingrozitor de scump dar…  nu se poate asuma riscul unei infectii care ar compromite transplantul si sansele lui definitiv). Inca nu au fost anuntati care dintre parinti este mai potrivit pentru a fi donator (sunt amandoi compatibili ca grup sangvin, Rh etc dar conteaza ecografia ficatului-dimensiuni, cat pare de sanatos, care are deci potential mai bun de refacere ulterioara, etc).

Siluan’s condition is pretty bad, due to a reactivation of the CMV virus, which led to fever. The virus reactivation can complicate things, because it can affect the new liver after the transplant. Because of that, after the transplant, the baby has to follow a treatment with Ganciclovir for at least 3 months (which is pretty toxic, not to mention very expensive… but this would be the only way to ensure there would be no infection). They still don’t know which parent will be the donor (they’re both compatible regarding the blood type and RH, but there are some other aspects that need to be considered: liver dimensions, how healthy does it look, which can have a faster recovery process etc).

10 August

Au ajuns la Hanovra cu bine si au fost acceptati, desi nu au banii integral pentru operatie!

They arrived in Hanover, even though they don’t have all the money for the surgery.

9 August

Dupa cum puteti citi si din documentatia medicala, cazul lui “Micu” a fost aprobat de catre Clinica din Hanovra. Maine, cu ajutorul lui Dumnezeu sa speram ca Siluan va pleca spre:http://www.mh-hannover.de/index.php?id=2&L=1. Dupa cum se poate citi si  din scrisoarea trimisa de catre clinica, costul operatiei si a tratamentului se estimeaza ca fiind 126 000 Euro, bani care trebuie platiti inainte de procedura.

As you may read from the Medical Documentation, Siluan’s case was aproved by: http://www.mh-hannover.de/index.php?id=2&L=1 where everybody hopes  he is going to have the liver transplant and get well.  Also, you may see that the whole cost of the surgery is estimated to be around  EUR 126,000 , the equivalent of  167,000 USD.

8 August

La multi ani!!! … astazi Siluan implineste 6 luni. Guvernul Roman le-a refuzat cererea pentru ajutor sub pretextul ca aceasta operatie nu este facuta momentan in spitalele din Romania, deci prin urmare cazul nu se incadreaza in legislatia  care prevede acordarea de ajutor banesc pentru tratamentele in strainatate…ciudata logica..?! Alta veste rea este ca au fost anuntati de la Innsbruck ca vor trebui sa caute alta clinica deoarece dr-ul care face astfel de operatii pleaca in vacanta si  Siluan nu poate astepta atat. Parintii incearca acum sa gaseasca un alt spital. Toate clinicile cer ca plata sa fie facuta inainte, altfel nu il vor opera practic. Vestile bune ar fi ca ambii parinti sunt compatibili si ca bebe este momentan stabil, avand parte de o ingrijire exceptionala. Doctorii sunt optimisti ca in cazul in care operatia se va face el se va recupera  repede si fara probleme…si  o vietuca frumoasa.

HAPPY BIRTHDAY!!! …today, Siluan is 6 months old. The Romanian Government refuses to give any help for the little baby. The parents were told that because this kind of surgery is not performed into the Romanian’s hospitals they won’t give any money for the surgery to be performed outside the country…awkward…?! Another bad news are that the Clinic from Innsbruck told the parents that their surgeon is leaving for summer holiday and  Siluan can not wait until he is going to be back. The parents are right now trying to find another hospital. Everybody want the payment to be made BEFORE the surgery,..practically without the money he is not going to be accepted for a liver transplant. The good news is that booth of his parents are compatible for the transplant. Siluan is stable, he is in good hands and the doctors are very hopeful that he is going to recover without any problem and can live a happy life IF the transplant surgery is going to be proceeded.

2 August

Astazi a  sosit rezultatul biopsiei. Siluan are atrezie de cai biliare, S-A NASCUT cu malformatia asta iar hepatita cu CMV a fost doar un epifenomen. Maine George va merge in Romania pentru demararea de urgenta a dosarului medical. Ei raman acolo, cu Siluan care are nevoie de  supraveghere medicala 24/24h.

The biopsy results are in. Siluan was born with biliary atresia and the CMV hepatitis was just an epiphenomenon. Tomorrow George will go to Romania to urgently start the medical file. Simona will remain with Siluan, who needs medical supervision 24/24h.

1 August

Astazi a fost o zi mai buna  pentru Siluan si momentan, situatia spun medicii pare ca se stabilizieaza. Inca se asteapta rezultatele biopsiei.

Today was a better day and for now the situation is stable. They’re still waiting for the biopsy results.

31 Iulie

Starea de sanatate a lui Siluan este cat de cat stabila si asteapta impreuna cu parintii sai rezultatul testelor de compatibilitate ce preced transplantul hepatic. Se spera ca saptamana viitoare sa se indrepte spre Innsbruck. Medicii il tin sub observatie si este monitorizat tot timpul. O zi de spitalizare ii costa pe parinti 700 euro. Momentan Siluan este sub tratament aici: http://www.salk.at/

Siluan’s condition is somewhat stable. He and his parents are waiting for the results of the compatibility tests that are usually performed before a liver transplant. They’re hoping that next week they’ll head out to Innsbruck. The doctors are keeping him under observation and his condition is continuously monitored. The parents are charged EUR 700 for each day of hospitalization. For the moment Siluan is under treatment here: http://www.salk.at/”

Va vom tine mereu la curent cu noile evenimente. Va multumim!

We will keep you posted with the news. Thank you