Tuesday, July 17, 2012

EPI 743 PROTOCOL

Hello,
we were a little bit busy this couple of weeks, Nina was recovering from pneumonia, she is one little girl with lions heart, i just can not admire enough to her inner strength.
I am pretty sure that she knows everything that is happening around her, she knows that she can not do the things that she could before October, and the way she cope with that is amazing.
Tears are coming from my eyes just to think how is actually being in her position, i want to be there, i want my soul to meld with hers because she is me.
We set up the breathing machine again, at first nights and during the afternoon sleep, than only nights and this couple of days she doesn't tolerate it so much so we stopped it. It is good thing to have caphnograph at home, so you can actually avoid blood gas analyses and be able to manage the respiration in home conditions.
I will suggest to every parent that has a kid with tracheostoma and a respirator to ask for this device so you can react properly when the CO2 levels are high. But, now we have to give back the pulsoximeter because the caphnograf has options to measure respirations,CO2 levels, but also heart rate and saturation. The only problem is that it has stupid design, actually the heart rate is impossible to see because the monitor has light only when you tip something and the numbers are so small and you have to bring the device to your face to actually see the numbers, also, there is no way to shut off the alarms completely.We disgusted that with the insurance and they don't want to let us keep the pulsoximeter and to buy it ourselves is a little bit difficult, it cost only 2700 euros!!!!
I must find something cheaper on e bay.
Also, i received the good news about my new work and that is that i will have to pass the approbation exam, which is not so easy, but the most important thing is that there are no more apointments prior to Mart 2013!!!!
                                                                    Our favorite


That means that there is no way to work in Germany as a doctor before getting approbation.
I have permit to work untill 2013 as a doctor but it is specifically to the former clinic, and also other doctors are working with the old permit so i think that not everything is clear in my case. I will try to find a lawyer that can tell whether i have case or not. Everybody is pushing us in our lives so i will push too. I know that
it can be expensive, but to stay till Mart 2013 without a job it's equal to bankruptcy.


                                       The uncle from ortopedics made pink "bots" for Nina


                                                                       The Lion King

                                                                     Family laughter

                                                          Always innovative in the kitchen

Also, we left the papers in the "unemployed" office so that we can receive something from the state until i start working. The man there was actually sweet and kind, but he got a heart attack while i was in his office and all my papers stayed there. The next day i went to the foreign affairs authority to ask about our situation and the told me that if i ask money as unemployed they will terminate our visas!!!!
Man just don't have luck sometimes, if i worked at least 1 year in Germany than it would be ok but i worked only 6 months and it is not enough. But i have contract with the new hospital from 1st of May, and i stopped working 17 of May. The changed the law in April about the approbation for doctors, i did not knew!!!!
I will try to find some solution, we must have hope.
The only good thing is that we received protocol for EPI-743 today, we sign the papers but,

in order to start treatment we have to make sleep study first and we got appointment for that at end of August.We waited so much we must wait more, maybe i can find other hospital for sleep study with earlier appointment.
About the treatment, it is connected with lot of examinations, for example the first day they will take blood every hour for 24 hours!!!!!To be able to do that they have to set some reliable bromilla, but from our experience that is not so simple. They took so many times blood from Nina and her veins are not easy to find, than we maybe should put central venous catheter which is also not a solution because it can stay up to two weeks and we have to make blood work until the 13 week of the protocol and there is always possibility for blood contamination with that. Other possibility is surgically inserted port in the inner veins but we don't want to think about that.
Many of you don't know that anesthesia is very dangerous for mitochondrial disease patient.
Their bodies recovers very slowly from that and it can cause a lot of harm.We pray that we wont be experiencing so much difficulties in the 13 week study protocol. After that we will decide together with our physicians whether there is improvement and whether to continue with EPI.
The protocol is in my possession right now so if some parents want to contact me about it, please do, i will be happy to share details with you, i think everyone deserve a chance with EPI.