luni, 24 august 2009

My Baby Girl`s Story

My Baby Girl’s Story

I don’t know how to start this off. All I know for sure is that we need help.

She was born on the 31st of October 2008 in Bucharest. She was 3.3 kilos (7.3 lbs), Apgar score 9.

I remember how I experienced that 31st of October, the moments before her birth up to the minute they brought her to me and I held her in my arms for the first time. I was so incredibly happy.

Until that same evening, when problems came up. The doctors did a medical check on her and diagnosed her with:

- complete common atrioventricular canal, Rastelli’s type A;

- persistent arterial canal;

- severe lung hypertension.

I have to say there were no problems during the pregnancy. We did all the medical tests on time; they could find nothing wrong with our baby’s heart.

After the post-birth diagnosis, she was catheterized at the Central Military Hospital. Then we were scheduled for hospitalization and surgery in Târgu Mureş. She had her heart operation done there. And then after-surgery complications appeared. Because of that we spent three months in various hospitals. We got back home last night.

This is what happened: three days after she’d been admitted to hospital she got an enteroviral infection. Another three days later, rhinopharyngitis. They catheterized her to assess her pulmonary resistance. Following the catheterization she got pneumonia. It was only after one month in hospital that Dr. H. Suciu was able to perform surgery on her. He told us afterwards that out of the 120 cases of complete common atrioventricular canal Rastelli’s type A that he had operated, our daughter’s was the most severe.

The surgery was 70-80% successful. However, due to severe pulmonary hypertension, a series of extubations and intubations followed. The intubation lasted two weeks. Then they had to perform tracheostomy on my daughter. So we stayed on for two more weeks, until they transferred us to the Marie Curie Hospital (Budimex) in Bucharest. That’s where we spent another two weeks. She had endoscopy done and that’s when we finally found out the diagnosis: it’s postintubation grade IV glotto-subglottic stenosis.

She needs two other surgical interventions. Their success depends mainly on the doctor’s surgical abilities. This type of surgery isn’t available in Romania, but only in Lausanne, Switzerland. It must cost a fortune(60000 euro).

I’m typing these lines and my hands are shaking. It’s been very tough so far. I’ve no idea how tough it’s going to be from now on. Sometimes I just don’t know what else I can do, how to do it, how to think about it.

I just know this one thing: I love my baby girl and I want this larynx problem solved. Because of the cannula she can’t make any sound. At times she can barely breathe, and that’s risky. For the moment we’re aspirating her ourselves. It’s really hard and…

This is our email:

We’ve opened these accounts:
Account Holder : Orbulescu Ioan-Sabin
Romanian currency (RON) account: RO03 INGB 0000 9999 0157 7010
Euro account: RO24 INGB 0000 9999 0157 7020
Swift Code: INGBROBU
ING Bank, Bucharest branch

Ajutor operatie dupa alta operatie

Aseara,ne-am intors acasa dupa aproape 3 luni de stat prin spitale.
Am fost la Tg.Mures pentru operatie la inimioara.
La 3 zile de la internare,a facut enteroviroza.Apoi,dupa alte 3 zile,rinofaringita . A urmat un cateterism(pentru masurarea rezistentelor pulmonare).Dupa cateterism,a facut pneumonie.
La 1 luna,de la internare,am facut operatia.Dr.H.Suciu,ne-a spus dupa operatie ca a fost cel mai grav caz de canal atrioventricular comun,forma completa,tip Rastelli A,din 120 de cazuri pe care le-a operat.
Operatia,a reusit in proportie de 70-80%.
A urmat o serie de extubari si intubari.Toate din cauza hipertensiunii pulmonare severe.Am stat 2 saptamani intubati.Apoi s-a hotarat efectuarea traheostomiei.Am mai stat inca 2 saptamani,pana ne-au transferat la M.Curie(Budimex).
Aici am stat inca 1 saptamana.I s-a facut endoscopie si am aflat si diagnosticul: glotto-subglottic stenosis grad 4(postintubational).Operatia nu se poate face in Romania.Reusita depinde de maiestria doctorului la care vom apela.
Pentru acest lucru trebuie sa apelam la acel formular 112,aproape inaccesibil,din cate am aflat.
Vor fi necesare cel putin 2 operatii,la Laussane(Elvetia).
Costurile sunt mari,banuiesc.Imi tremura mainile,cand scriu aceste randuri.Pana acum a fost foarte greu.Cum va fi in continuare,nu stiu.
Uneori nu mai stiu ce sa fac,cum sa fac,cum sa gandesc.
Stiu un singur lucru,imi iubesc fetita si vreau sa rezolv aceasta problema de la laringe.
Avand canula,nu poate scoate nici-un sunet.Uneori are dificultati de respiratie,mari si riscante.Acum o aspiram noi.E foarte greu si......

Adresa de
Am deschis urmatoarele conturi :
Titular cont : Ioan-Sabin Orbulescu
Cont Lei : RO03 INGB 0000 9999 0157 7010
Cont Euro : RO24 INGB 0000 9999 0157 7020
cod Swift : INGBROBU
al ING Bank sucursala Bucuresti
Ioana-Sabina,Ramona,Ioan-Sabin Orbulescu
P.S.- va multumim.