Late news from the beginning of spring

22/05/2016 12:07

The beginning of so wished-for spring was marked by receiving my new stander and being in hospital with pneumonia.


Finally I have a new stander! I’ve already used it once but there is still some tweaking left to do. Dad has already ordered a new adapter for Headpod. We are waiting for it eagerly; it’s on its way to us, all the way from Spain. As soon as we fine-tune my new red stander, I’ll show you how I maneuver it!


A dramatic moment took place at home in March. My cough dramatically worsened at night, and my blood oxygen saturation level (SpO2) started to fall far below 90%. The cough assist machine didn’t help, so we had to go to the emergency room. The on-call doctor was great, and she managed to arrange a bed for me when I was suffocating and on oxygen. The hospital was fully occupied. For a moment I even had to lie down next to a coughing girl in the diabetes department. In the x-rays they found a nodule on one of my lungs, and then they also discovered the RSV virus. Luckily I was able to get to my favorite doctor and nurses at the pediatric pulmonary department quickly, and they helped me a lot. After three days of continuous fighting with the help of the cough assist machine, pumps, massages, and my little BiPAP (non-invasive pulmonary ventilator), my condition began to improve. For the last two days in the hospital, a girl suffering from a bad disease who needed the BiPAP more than I did join me in the room. But the problem was that the department only had one BiPAP! The bosses at the hospital should have purchased more of these devices for the children in the pulmonary department! Mom and dad called a wonderful vendor who sells this device, and we borrowed a BiPAP from him, hopefully our insurance company will reimburse it. So now we have this awesome machine at home, and we are prepared for the worst situations. Furthermore, I started sleeping with the BiPAP at night. In the morning I am far more well rested, and I have more energy. I stuck around home for a bit longer so that I could recover my strength. I lost 1kg in a week at the hospital, so we have to make up for it now. We started with the exercises again, and it is a real nuisance. You know in the hospital, I received toys, treats, and new fairy tales. Mom even sat through a Barbie movie. I love her so much! So it really wasn’t that bad. But home is home…


New photos are here!