Will you help me to survive?
heart surgery: double switch operation, saving John's life
Ends at: 27 September 2017
Przez wiele dni trzymaliśmy mocno zaciśnięte kciuki, z niepokojem sprawdzaliśmy, co u Jasia, szturmowaliśmy niebo modlitwami, bo były chwile, w których było naprawdę źle… Ani przez chwilę nie traciliśmy nadziei, że historia tego chłopczyka będzie miała szczęśliwe zakończenie.
I tak się stało!
Dziś, gdy Jasiu jest już z rodzicami w Polsce, możemy Wam opowiedzieć o podróży po zdrowe serce.
Świtem 7 września 2018 roku Jasiu poleciał do Stanów, gdzie w Boston Children’s Hospital czekali już na niego mający go operować lekarze.
Pierwszego dnia pobytu w szpitalu Jasiu miał zrobione wszystkie badania – echo serca, KTG, RTG, pobranie krwi. Kolejnego dnia wykonano cewnikowanie serca oraz ablację.
Jesteśmy w ciągłym kontakcie zarówno z naszym amerykańskim kardiologiem, anastazjologiem, elektrofizjologiem i profesorem Pedro del J Nido. Rozmowy o tak ciężkiej operacji, o różnych komplikacjach, mogących wystąpić zarówno w czasie operacji, jak i długo po niej, są dla nas, rodziców, bardzo, bardzo ciężkie. Jesteśmy jednak pod ogromnym wrażeniem personelu medycznego, ich wiedzy, kwalifikacji, podejścia do pacjenta, a przede wszystkim widzimy, że wszystkie decyzje są podejmowane wspólnie, nic nie dzieje się przypadkiem, a lekarze różnych specjalności stanowią jeden team, jeden zespół - napisali rodzice.
13 września o godzinie o godzinie 7.30 rano Jasiek został przyjęty na blok operacyjny.
Operacja trwała 6 godzin, co 2 godziny rodzice byli informowani telefonicznie o jej przebiegu.
Szóstego dnia po operacji udało się wybudzić Jasia i go ekstubować!
Walczyliśmy cały dzień, bez skutku, nie pytajcie ile razu próbowano go wybudzić, ile było stresu i nerwów. Mały jeszcze jest całkowicie skołowany i od razu usnął, mam wrażenie że całkowicie nie wie co się dzieje, że tak naprawdę jeszcze mnie nie poznaje, ale najważniejsze, że odłączono respirator i każdego dnia liczba rurek i kabli się zmniejsza.
Małymi kroczkami do przodu... powolutku - napisała mama.
Przez chwilę z Jasiem było naprawdę ciężko...
...ale na szczęście strach minął!
Jasiu był pod opieką najlepszych lekarzy. Konieczne było sprawdzenie, czy z serduszkiem jest wszystko w porządku!
Czasami tak rozmyślając nie możemy uwierzyć, że być może powoli zbliża się koniec walki. Tęsknimy za codziennością, tęsknimy za nudnym życiem - to nasze marzenie - napisali rodzice.
5 października Jasiu wrócił z rodzicami do Polski, do swojego domu we Wrocławiu, do upragnionej codzienności.
Boston zawsze będzie nam się kojarzył z cudem, walką o życie i nadzieją, którą podarował nam dr Del Nido - a to wszystko dzięki Wam, ludziom dobrej woli. Nie wiemy jaka przyszłość przed nami,czas pokaże... oby teraz spotykały mnie już tylko dobre rzeczy.
DZIĘKUJEMY Wam z całego serca za to, że małe, Jasiowe serduszko może dalej bić.
We were crying on the oncology ward, when our three month old boy was going through next cycles of chemotherapy. Every day seemed to be eternity, when we were waiting to find a bone marrow donor. When we overcame one disease, another punch was waiting for us- a heart defect of our little boy- extremely rare, deadly dangerous – begin to be a huge threat for his life. We were waking up at night, listening with the feeling of horror if John`s heart is still beating. … John is already after the first stage of curing heart defect, he has gone through it thanks to you, but the second stage remained. A surgery thanks to which John`s heart will function as healthy and he will live. Now when we are one step from our nightmare to end, a vision of death of our child to disappear and a regular life returned, we are begging for help- will you become John’s aunt or uncle and will you help him to survive?
Before John joined us, we were a regular family we knew hospital only through the prism of a maternity ward. About heart we knew only that it has two ventricles, two auricles and that it pumps the blood, which enables life; we knew calls for help only from leaflets and posters of other people. … Today hospital is our second home. Within the past dozen months we spent more time in it than in our apartment. We know everything about heart. We know Latin names and names of all the most important specialist in the world. One of them is the most important. Professor Pedro J del Nido from Boston‘s Children Hospital because he as the only one in the world agreed to treat our son and give him a chance to live. He was the one to perform the first stage of treatment and he will be the one to perform the second in October, which will decide about the life of our son. It was not so long ago that our hearts were only overwhelmed with diaper, but now there is also hope in them as well as also fear of whether we will manage to raise the money. Before John was born we did not aware what does it mean to be really afraid. Now, after several times we had to tear our son from the hands, now we know. We became parents of a disabled child whose heart is like a ticking bomb and sometimes it is very hard, but one smile of John is enough for the power to fight to return. We love him and his imperfect heart. With all the power of our healthy hearts we will do anything to rescue him!
In the family John is known as a “tough guy, because sometimes we look at our little boy and wonder what is the source of his amazing strength. He has already gone through more than not one adult would break down, gave up, loose altogether the fight with death. John is not two years old yet – he will celebrate second birthday on the 15 of July. And he has already conquered the death twice. Our incredible little warrior whose face enlightens the darkest darkness We were waiting for him with longing. For the moment when a new life will join our family- Meanwhile in the middle of pregnancy death sneaked with the deceit. During the midterm ultrasound it turned out that our little boy will be born with a serious heart defect, so rare that it constitutes only 0, 5% of all possible malformations…. An inversion of ventricles took place in John`s heart ventricles switched places he also has got (L-TGA) and Ebstain Syndrome which is a valve dysfunction as well as Ventricular Seizures Tachycardia. During prenatal tests doctors were looking at John`s heart for hours. No one has never seen such a malformation before. In the ninth month of pregnancy we heard that John`s condition is critical and that we are not to hope that he will survive… Then our heart broke. We would give our own so that this little one could brat… But John turned out to be stronger than doctors predicted. The most precious gift was waiting for us- his first step. A Testimony that our little boy is alive, that he conquered death and is with us.
The second great gift was the news that so far his little heart is stable. Our anxiety was aroused by the colour of John's face- it was chalky white like a wall. We were convinced that it was caused by his heart- yet our little son has got an incredibly rare heart defect, what is the likelihood that he suffers from something else? Unfortunately it occurred that fate and statics are cruel. In John'`s case Aplastic Anaemia was found. The disease caused by malfunction of bone marrow cells. The disease happens once time in a million cases. Only destroying of bone marrow with the help of chemotherapy and a bone marrow transplant could survive the life of our child. We were crying looking at John`s little hands which were slumped from constant prickles, litters of blood steaming though a tube, because only transfusions kept our little boy alive, we were looking at him after being devastated by chemotherapy. We were crying out of happiness when a bone marrow donor was found and when on the 21 of April John when though the transplant conquering death for the second time.
When we abandoned the oncology ward John started to suffer from heart. We defeated one enemy, we won the battle, but the fight was waiting with another the most dangerous enemy…. John was growing up his heart was becoming more and more inadequate. The doctors told us that if nothing changes heart transplant will be his only chance. But there is practically no chance to find small hearts suitable for heart transplant. We were writing for every Cardio-surgical center. We were calling and sending all the necessary documents. Johnny was a child with a medical history of a bone marrow transplant. Probably the only case in the world, who needs such an operation and in after a bone marrow transplant. Positive answer came from The US Boston’s Children Hospital agreed to treat Johnny. We counted on that, because it is one of the best hospitals in the world when it comes two treating heart defects, which are told to be helpless cases , the hospital where small hearts are fixed. Children blue from hypoxia with little faces with the colour of berries domed practically to death return from this hospital with normally functioning heart. Doctors who came to know the case of our little boy planed two staged treatment for him-banding was the first one, it is set up of a special band which was supposed to end blood circulation failure and enable heart the work preparing for the adequate operation- double switch planed half year later. The chances that after this operation John will function like a normal child were estimated on 98%.
The medical help in the US is one of the most expensive in the world. Ask yourself whether any parent would not do what we did? We knew we would move heaven and earth. To raise the money. We were only scared that we will not make it on time. Banding had to be done before John’s second birthday. Otherwise we would lose the chance to rescue our child! We had no other choice we asked for help. Calls for help, which earlier we saw many times- now our was among them… Thanks to wonderful people who with great hearts, people like you, who fall in love with John just like we, we managed to raise the money necessary for the first stage of treatment of our little son. On the 25 of February we took flight to Boston. At first John had to undergo long medical examinations- due to his medical history. In addition to cardiological a consultation with haematologist and an expert from transplantology was necessary. The surgery took place on the 8 of March. During two hours when John was on the operating table. We were thinking only about him- we could not do anything, eat or even breath normally. We only could black out the air, when we found out that the operation was successful. We were by John`s side day and night and the doctors treated us as if we were part of medical team. The operation took place on Wednesday. On Friday Jasiek woken up from an induced coma. The medical team was impressed by his strength and well he is doing. John quickly came to himself. On the way to Poland he was running through the airport on his own two feet dragging the suitcase. He was showing up and mopping in his usual manner. Our little tough guy.
Without a doubt we can say that John found himself in the best that we gave his heart in the best possible hands. Of course we know that who we are grateful to. It is you. Our gratefulness’ knowns no boundaries. The fact that we were just on time was also highlighted by professor. Thanks to this the risk of complications is very small! We already have an estimate of the second stage . John will have a double switch surgery, correction of an inflow at the arterial level and vermicular haemorrhage also before the surgery heart cauterization will have to be done and an ablation, which will end bad electrical conduction - it will end tachycardia. In case of any complications will have pacemaker installed. We hope that it will not happen. After this operation John has a chance to be a healthy child and functioning with no medication. Today the rhythm of our day is designated by its administration. John is given medication 9 times a day- on the arrhythmia, on strengthening of the heart, immunosuppressive… Not only our little son will life, but he will also function like every perfectly healthy child.
We are so close of reaching the target. In October the next stage of treatment and we have to raise a great sum of money. We will not be able to do this without you…. We hope that we will manage, we have to. The life of our child is at stake. We desire nothing more than John to be healthy so that we could be a normal family again. Far from the hospital nightmare, from the fear and danger. John`s disease changed us - we are happy with every day, every little thing, because we know how fleeting happiness is. In every moment disease and death can knock down to the window. In spite of a beautiful spring it can only be the medical stuff, hospital walls and tears. We parents of John thank you for everything you did so far and are asking or to be more specific begging you- help us for the last time- will you rescue the life of our son?