Friday, April 27, 2012

Nina is Home!!!

  I should propably give titlles to our post but I can update'em afterwords. I would like to describe our story continuing from the post from before yesterday, as I said we stayed 50 Days in hospital!!!!

   You know, in the last week the doctors in this hospital started to suffer from us, they just didn't want to accept that we now something about medicine, even more than some of them, so they called a psychiatrist to come and talk to us and try to convince us to take it easy with them because THEY were scared from us and it was inconvenient for them every time we talked, we were having too much questions??????????
   But of course we had questions, that was my daughter laying in that bed not their children, they also didn't want to give us another room after our condition was stable, they were seeing us that we just don't have any more strength standing in this room and sometimes sleeping in a chair (that was luxury), but  Nina was the one that gave us energy all the time.

 After her tracheostomy she was connected all the time to a respirator, the doctor that was responsible for respiration actualy only convinced us to have tracheostomy and never come again to see his litlle patient, we were looking for him in his other department and they were accusing us that we shouldn't do that, but nobody wanted to give us guidance what should we do in the future, they didn't even thought that Nina can breathe alone. So we started to make pauses with the respirator, first, everyday 1 hour than more and so the last two weeks Nina was breathing without respirator!!!!

 We were so happy, nobody gave us instruction what should we do in future so we had to learn everything on Nina's back!!!  And this hurts so much, every time we have to change the canula, every time her tissue starts to bleed, every time we change the compress and clean the wound, she is crying,  we now that she has pain its just so hard. We had also unpleasant situations when the canula just don't want to come out, so you pull strong because you must do this quickly, if you make to much pressure the surrounding tissue will swalow and then you can not change the new, clean cannula, the tracheal channel can collapse, and she can stop breathing!!!!!

So, after they let us go home, first, they did not want to do this without a nursing care, sometimes you must wait 3 months till somebody takes you, i did found one, and we agree that they will come in 14.00 hours on 12 Decembar, the day that we leave this hospital, and you know what,they didn't come!!!

                                                          Nina and her friend Hannah

Nina was dressed up, and first time after 50 days in Germany Nina was able to go home in our new apartment!!! But this terrible nursing care people didn't show up, the medical transport was here and they didn't want to take us because there was no nurse to go with us, i said that i am a doctor and a parent so what more they want!!!We put big struggle again and finally i convinced them to go home!!After 45 minitues we were home,NINA IS HOME!!!Our journey continues tomorrow !!!


  1. Pocituvani mama i tato na Nina i Darin,
    Slucajno go otkriv vashiot blog na Facebook. Gi procitav site postovi i dolgo gi gledav site sliki. Se inzaplakav, vashite decinja se preubavi i preslatki,Nina e srce,najubava princeza, ne mozam da prestana da gi gledam nejzinite ocinja-vistinski borec e...ocajna sum, ako recam deka znam kako se cuvstuvate nema da bide vistina, bidejki neznam ...socuvstvuvam so vas iskreno i go molam Bog da vi dade sila da izdrzite vo seto ova, da im dade sila na malite dushicki, go molam Bog da najdete lek, da najdete spas da ne stradaat. Mislite mi se konfuzni dodeka go pishuvam ova,ne mozam da se smiram,samo sakav da ve prasham kako moze da se donira, dali imate otvoreno smetka, linija i slicno i nekako da se objavi vo mediumite ...
    Ke gi sledam site novosti na vashiot blog vo idnina, ke se molam za Nina i Darin, od sega pa natamu ve nosam vo mislite. Ve molam da mi gi izgushkate citame

  2. Dear Viktoria,thank you for your sincere thoughts,i am writing on English so everybody can read it,all i can say is that we are glad that you read our posts,it took a lot of courage for me to start writing this post,i think nobody in macedonia was aware of our situation,we didn't talk to much with people about our situation,i think that not everybody can understand,but i felt obligated to tell our story,to tell the world about Nina and her struggle,to tell about her suffering,how strong she is,and also the fact that darin has the same genetic mutation and that my wife gave birth to perfectly normal babies that somehow are condemned to fight their way

  3. Slicno kako i Viktorija, i jas slucajno dojdov do linkot od Vasiot blog... I uste ne mozam da poveruvam niz kakov horor pominuvate so Vasite decinja!!! Premnogu me potrese celata prikazna od pricina sto 7 godini se borevme da imame deca soocuvajki se so mnogu problemi i komplikacii i vo moment koga mislevme deka nema sansi, Gospod ni go podari naseto sonce Jakov (roden e 17 Maj 2011, vrsnice na Vasiot Darin)!!! Ona sto sakam da go kazam e deka sum sigurna deka i Vas ke Ve ogree sonce, deka ke se smenat rabotite na podobro i deka ke mozat Vasite dve angelcinja da imaat normalno detstvo i ponatamu normalen zivot!
    Ke se molam za Nina i Darin i dokolku mislite deka nekoj od nas tuka (vo Makedonija) moze nekako da Vi pomogne, Vi stoime na raspolaganje!!!
    Sto se slucuva so donaciska smetka, imate li otvoreno? Sigurno ke se soberat pogolem del finansiski sredstva za da moze polesno da se borite so bolesta!

    Golem pozdrav od Blagica i Vanja i od maliot Jakov do site Vas a najnajgolem do preubavata Nina - Vasiot borec!

    Mislime na Vas i se citame!

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