Hello, today is worse than yesterday, we are really coming to ourselves and seeing that it was not a bad dream, our kids have mitochondrial genetic defect and Nina has the disease, Darin started to show some imbalance and insecurity, so I don’t know if the disease is starting to show signs on him also. We stare all day and look his feet, hands, eyes and it is like we are waiting to see that something is wrong. That was also the case before we received the results, but now that we know it’s like waiting for the disease to come. There are no words to describe this feeling, knowing that nothing will NEVER EVER be all right !!!!!!!!!!
I apologize to you, our friends and people who are reading this, if you see that not every text is connected, it is because there are like thousand thoughts going through my mind all the time, my brain searches for an answer and is restless, my body just moves so that I can finish my daily routines and I keep thinking for solution, but there isn't any!!!!!!!
You know, we are not like other people, we are not angry when our children makes some mess; instead we are full of joy when Nina smiles at us sometimes. This is the only way when we know that she doesn't suffer in that moment, or doesn't have any pain.
Nina is taking L-polamidon or more known as METHADONE. She is addicted because she was intubated for one month last year in October. This happened the next day when we arrived in Germany from Macedonia!!! She was so happy an excited about our trip to Germany. Sadly, all that she has seen in Germany since our arrival is suffering.
We came late that evening and we were all exhausted from the trip. The next day we saw that something was wrong with Nina, she was very tired, she couldn’t open her eyes very well, couldn’t eat or drink, she threw up couple of times and I knew that we must take her to the hospital. We had to travel to a nearby city because it was the only hospital with neurology department for children in this region.
There, they measured her blood gases and saw that CO2 levels were high and they intubated her!!!! What a shock!!! We couldn't imagine what was happening to us, our beautiful Nina intubated!!! So they told us that we can make a MRI in Monday (it was Saturday when we came) and that we can make muscle biopsy probe and use this time while she sleeps in order to get the right diagnose and then they can extubate her and hopefully everything will be all right again!!! BUT, on Monday they started to ask us questions about insurance, money and similar things like who will pay and because of these things we had to wait one week to make MRI and another week to make muscle biopsy.
During all the time our sweet little fighter was sleeping with sleeping drugs. Her blood findings were back to normal and she was metabolically stabile but she was still intubated, with central venous catheter in her neck, receiving opioids for sleeping and other things all because we didn’t have insurance (we did have travel insurance and insurance from our home country) but we had to pay the costs to get this diagnostic procedures. Because of all of this, our situation became even more complicated and we STAYED for 50 days !!!!!!!! I often wonder if everything would have been different if then I just said: NO, no more examination for now, we go home and we will come another day in your ambulance!!!!! But we thought that we were doing what is best for our daughter and we didn't know that every day in hospital is doing us more harm than helping, and after the first 14 days there was no way to get out of this hell so easy!!!!
They tried to extubate Nina 3 times and had to intubate her again because all of these medications and procedures were suppressing the brain centers for breathing and she lost a lot of her strength to breathe alone.
Than we had to make tracheostomy and she was connected to a breathing machine all the time!!! We were like guards, looking every heart frequency change, every breath she would take, everything that the doctors and nurses were doing ,and believe me they couldn't also get along with us so easy, we were fighting every day with all material things around her and all the universe, so that we can do what is best for her. They took her blood samples like 1000 times. Her little fingers were brown all the time, there was no more space for another blood sample. This is what mitochondrial disease makes to children. We had to persuade the doctors to show us what they are doing, not only looking at the numbers and not even seeing Nina, and there was also the insurance problem.
So I started working. Every day from intensive care unit I was traveling to another city just so that we would be able to get insurance and these things take a long time. We were foreigners and we had to wait for everything and go to a lot of institutions to leave documents. During all this time Nina was laying in bed and waiting for her parents to do something for her!!!!
The bill in hospital reached 100 000 Euros. We had to engage a lawyer so that we can try to decrease this amount by half because the marathon-stay in hospital was not our fault, they simply did not want to let us go without knowing how we will give them their money!!!!
Our story is very long so we will continue tomorrow. Please, do not hesitate to leave comments on our blog. We would like to update this blog even more so that other parents can read it and we can all become more aware of mitochondrial diseases!!!