DS: After my son was born, he has spent 4 months in the department of intensive care. He was diagnosed with atresia of the larynx which is a very rare condition. The doctors managed to make the first unique operation, so the baby survived. But in order to allow my son to live a more or less normal life, we needed one more surgery - the reconstruction of the larynx. And we have been looking for a long time for a place to do this operation. In Russia no medical doctor has experience in such type of surgery. After 4 months in the intesive care, my son was transfered to the department of pediatrics, so I was able to be there with him all the time. I was learning how to take care of him, I was getting to know my child. Previously when he was in the intensive care I was able to see him only several times a week. My baby required special care - sanitation of tracheostomy (sputum collection and removal), feeding through the nosal tube, change of the special tube in his throat that was helping him to breathe. This was not how I imagined motherhood. I had so many questions and noone could really answer them.
All the procedures required a lot of additional equipment and different supplies such as filters, desinfectans, tubes. Everything was very expensive and extremely hard to find! My husband has been looking for everything himself. Everything was extremely hard to get, you had to spend hours going to different remote places to collect all the materials. We were under a lot of stress all the time. In our local hospital the doctors have never seen a child with tracheostome before. Doctors were asking us a lot of questions, they were clueless, and they advised us to contact the Children's Hospice. Later a coworker of my husband told him, that she received a lot of support with the supplies and other things from the Children's Hospice. We did not have much hope.
We did not receive the answer from the Hospice right away. We knew that the ressources of the Hospice are limited. My Lord, we are so grateful that they answered us... They have appointed us a curator. We had a meeting and the curator made a list of everythng we needed. The people from the Hospice had a lot of experience and answered so many of our questions. The medical doctor from the Hospice visits my son Philippe regularly. Tracheostome increases the risk of infections, because the air goes straight to the lungs, so it is risky to take my kid to the hospital. Apart from a doctor who could visit my baby at home, the Hospice organised us a meeting with neurologist, resuscitator, allergist and physiotherapist. The Hospice gave us aspirator, catheters, napkins, filters and more... I could not hold my tears when I have opened the package that they sent us. We are so grateful... The Hospice gave us hope. I was able to spend time with my son instead of running around the city and looking for supplies. We are so grateful... The resuscitator from the Hospice saved my son's life. It was the new year's eve and we were changing the tube in my son's trachea. We could not get it right and my son started to choke. We called the ambulance, but they were not able to help us, they did not have the tubes of the correct size for babies. The resuscitator from the Hospice arrived within an hour and saved my son's life... It was a miracle.