Nobody has such a heart ... Let's save Martyna!
REGULATION OF THE ACCOUNT FOR TREATMENT SAVING LIFE, HEAT CORE IN MUNSTER
Ends at: 30 March 2019
heart surgery in Munster
heart surgery in Munster
Martynka jest już po cewnikowaniu serduszka! Ponad tydzień temu wróciliśmy do domku.
Na szczęście zabieg został wykonany zgodnie z planem, a serduszko po tych wszystkich akcjach i odważnej decyzji profesora Malca i jego zespołu (o reoperacji) pracuje dobrze. Na tyle, że na ten moment wystarczą kontrole u kardiologa co 2-3 miesiące.
Największym problemem, jaki teraz mamy, to plastyczne zapalenie oskrzeli, które Martynka miała jako jedno z powikłań po operacji i które wraca... Momentami tylko w postaci kaszlu, a momentami w postaci odlewów, które Martynka odkrztusza.
Jest pod kontrolą pulmonologa, a my jesteśmy w stałym kontakcie z lekarzami z Munster. Wiemy, że nasza córeczka jest bezpieczna z taką opieką! Staramy się rozpoznawać ten kaszel, który niesie za sobą konsekwencje i działać w porę, bo jest to niebezpieczne ze względu na to, że wtedy drogi oddechowe się zatykają i spada saturacja.
Z dobrych wiadomość: kilka dni temu Martynka skończyła 4 latka! Jest wspaniałym, szczęśliwym dzieckiem. Po wyjściu ze szpitala do domu psychicznie dochodzi do siebie, jesteśmy pełni nadziei i wiary w przyszłość! Martynka ma siłę na zabawę, na spacery, ładnie mówi, jest takim fajnym kochanym dzieckiem! :)
To wielka radość patrzeć na Martynkę, kiedy jest taka pełna energii. Cieszymy się, że wspólnymi siłami daliśmy jej szansę na to, aby mogła być operowana w Munster. Wiemy, że bez tego dzisiaj moglibyśmy być w zupełnie innym miejscu, ale o tym wolimy nie myśleć...
Pozdrawiamy serdecznie i ściskamy mocno. Jeszcze raz z całego serca dziękujemy!
Marcelina i Albert, rodzice
What do you think a parent feels when their child is dying, and the doctors next door are fighting for hours to bring them back to life? There are absolutely no words to describe it, nobody has ever thought of words strong enough to describe that. Fear, pain, hope- all of these are running through your body creating a circle of pain crushing your heart so strong that you cannot breathe. We prayed to God to save Martynka, but if she had to suffer- we wanted the will of God be done... But our daughter survived. However, it is not the end of our fight for her life. What we do know now, is that if we hadn’t been sent to Munster, our little girl would have never survived... Please help our little girl continue her treatment in the best specialized clinic, help us save her life!
In August last year you have helped us to raise money for her surgery for the first time, giving our daughter a chance to live. Thanks to you, in December 2018, Martynka went through a heart surgery in Munster. We would love to tell you that everything went according to the plan and we have a healthy little girl, but life has decided to surprise us once again….
Nobody expected what happened in Munster. Prof. Malec himself admitted that it was one of the most difficult cases in his career. We are so grateful that we have met so many amazing doctors and medical staff there. It is because of their commitment and experience, Martynka is still alive and still fighting for life! But the medical expenses have grown dramatically after what happened and we are still waiting for another cardiac catheterization. But let’s start from the beginning…
We went to Munster so that Martynka could undergo the last out of three Fontan’s procedures, which would finally allow her to live with such complicated heart disease. In addition to all of this, her heart is placed on the right-hand side, which made everything even more difficult. On Friday, 14th December, at 7:15 am, we have been sent to the 3rd floor of the clinic. We did not have to say goodbye just yet, we were holding her hand until they anesthetized her. After that we just had to leave and wait outside… After long hours we finally got a phone call that the surgery went well and that everything went according to plan. Huge relief! Indescribable joy has gone through our hearts.
On the first day after the surgery Martynka was doing great, on the second day she even started sitting up! Unfortunately, our excitement was ruined by… cough. At first it wasn’t anything major, but with time it has gotten worse. The doctors run some tests and found out that there is something very concerning happening in the lungs. Three days later, saturations have gone down. The doctors suspected pneumonia, so they acted immediately. Unfortunately, it was getting worse- she was sweating excessively, they had to change the sheets every other hour. She was getting worse by the hour; the cough was getting stronger. After a sleepless night, after another horrible cough attack, she knew something was very wrong. I saw the horror in her eyes. Martynka was blue. I started screaming- the nurse came immediately.
All the doctors came running and we had to sit outside. The doctors updated us very often, that they were still fighting for her life. It took 5 hours, but they made it. When we got back to the room, she was intubated, all swollen. We were worried that the brain has been damaged.
Despite the fear, we were impressed by the professional help and the commitment of the staff and how hard they were trying to bring our child back to life. It was incredible- they were fighting as if it was their own child’s life at stake. She was stable for one day and then another crisis came-once again she stopped breathing.
It turned out that her airways have been blocked by some sort of a blood clot, which was constantly moving. The situation was getting more dramatic by the hour. Another resuscitation, another attempt to remove the blood clot failed. We got down on our knees and we prayed for a miracle. The feeling of helplessness and despair has torn our hearts into pieces.
Assistant professor Januszewska updated us constantly, she calmed us down, she assured us that they are not giving up and what’s most important, that Martynka is not giving up. Our baby girl was finally put on ECMO- a machine that was breathing for her. Thank God her heart was beating by itself. They finally removed the blood clot! We could finally see our little girl.
We will never forget that sight- her chest was open, ECMO was plugged in, her head looked twice the normal size, she was completely swollen. We knew she was in the best possible hands, but we would love to give her a hug, take her home, to her little brother, to her safe place…
Prof. Malec has made another difficult decision to have another surgery, some blood clots have appeared in the Fontan tunnel, that was created a week ago. Martynka’s heart is on the right-hand side, so the tunnel was, in addition to all of this, blocking the pulmonary arteries. This time it all went well, professor Malec and his team have enlarged and elongated the tunnel, removed all the blood clots. Martynka’s life was saved once again.
Unfortunately, after all of this, Martynka has struggled with a lot of infections and after-surgical complications, but the most serious of them all was the fluid that was gathering in her lungs. Every day, Martynka must take various tests that determine, what kind of medication she needs. She will soon go through another cardiac catheterization. In the past few months we have gone through a lot. Unfortunately, because of all the complications, unforeseen surgeries and a long stay at the hospital, the hospital expenses have grown up to 140 thousand euros. We simply do not have that kind of money and we have no idea where to get it from. We have no other choice, but to ask others to help us, yet once again. It is very difficult watch your child’s life leave their innocent little body. We ask you to help us on our way to fight for her life… We truly believe that there are some joyful days ahead of us…
Marcelina i Albert- Martynka’s parents