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Zgodbe srčkov




  Zgodba srčka Alena









ALEN JE ODŠEL BREZ SLOVESA


Čutil je, da bo odšel, po licu mu je pritekla solza in tako nas je 16. 05. 2013 za vedno zapustil naš srček Alen. Imel je komaj 15 let. Njegova diagnoza je bila hipoplastični desni prekat. Za to diagnozo so bile planirane tri operacije, vendar jih je on prestal kar pet, imel pa bi še dve, če bi še živel.

Prvo operacijo je imel, ko je bil star 4 dni. Operirali so ga v Ljubljani (dr. Kosin), in takrat je imel zelo malo možnosti za preživetje. Operacijo je dobro prestal, vendar je prišlo do zapletov, tako so ga po petih dneh ponovno reoperirali. Tretji poseg je imel pri 17. mesecih, takrat sva šla v Pariz. Tam je vse potekalo brez težav, povedali so nam, da so rešili, kar se je dalo, da pa so mu pri nas poškodovali eno pomembno žilo.

Od takrat s strani srca ni imel nikoli nobenih težav, vse do njegovega 14. leta. Takrat mu je saturacija začela padati, dobil je aritmijo in enkrat se je tudi zgrudil.

Četrti poseg je bil planiran leto prej, preden so se začele težave, vendar takrat dr. Mishaly ni operiral, saj ni imel licence, in sva morala počakati z operacijo.

Aprila 2012 sva zaradi težav s srcem le pristala v bolnici. Takrat je bil dva tedna na kardiološkem oddelku.

Tudi takrat v UKC Ljubljana še niso imeli rešenih težav s kirurgom.

Tisti čas je k nam prišel profesor dr. Marko Hazekamp iz Laiden University Medical Centra. Predstavili so mu Alena in svetoval jim je, da mu s katetrom najprej zaprejo dve žili, čez pol leta pa bi naredili operacijo. Ker bo ta pot bolj varna za Alena, kot pa, da gre takoj na operacijo, saj bo imel resne težave.

Iz kliničnega centra pa sva dobila dokument, s katerim bi lahko še isti dan odpeljali Alena v Izrael na operacijo. Čeprav so imeli ta dokument že deset dni pri sebi, so naju z izgovorom, da niso vedeli ,zakaj ga nisva dobila prej, odslovili.

Bila sva v dilemi kardiologi so trdili, da ne sme takoj na poseg, kirurgi pa, da naj gre takoj na poseg. Seveda sva se takrat odločila za lažjo pot, in Alenu podaljšala življenje. Tako so mu pred ev. izvedbo fenestrirane totalne kavopulmunalne anastomoze opravili perkutano zaporo vene azygos in vene hemiazygos.

Pol leta je hitro minilo, Alen je postal dijak, vpisal se je v logistično šolo, zelo rad je hodil v šolo.

23. 11. 2012 so ga klicali, da mu izpulijo dva zoba. Z aspirinom, ki ga je jemal za ta poseg, je moral prekiniti pet dni prej. Po posegu sem vprašala, ali že imajo datum njegove operacije, vendar so mi rekli, da letos še ne bo na vrsti.

27. 11.2012 ob 11. uri nas kličejo iz kliničnega centra, da naj Alen pride na sprejem, ker bo 28.11.2012 operiran.

Takrat nisem vedela, kaj bi naredila. Alen je bil do 15. ure v šoli. Zaradi težav s srcem sem si mislila, da je bolje, da ga operirajo zdaj, ker potem spet ne veš, kako dolgo boš čakal.

V klinični center smo prišli ob sedmih zvečer, Alen je bil drugi na vrsti za poseg.

Zdelo se mi je vse čudno, imel je še rane v ustih od posega, imel je vso terapijo, za ekstrakcijo zoba je moral prenehati pet dni s terapijo, a za tako velik poseg na srcu ni bilo potrebno nič.

Tisti dan ni bilo zdravnika, ki bi mi kaj povedal.

28.11.2012 sreda, Alen naju že zjutraj kliče, da so naredili spremembo in da bo prvi na vrsti. Takoj se odpraviva k njemu in moje slutnje so bile močnejše, ne bo dobro, že zdaj gre vse narobe.

Še zdaj se spomnim, kako prestrašen je sedel na postelji in me vprašal ali res mora na operacijo.

Tik pred operacijo je le prišel kirurg, povedal je, kaj mu bodo naredili in kaj se lahko zgodi.

Takrat sem naenkrat rekla, da ga ne bom dala operirat, da greva domov, ker je vse to tako na hitro.

Tedaj me je začel prepričevati, da je sedaj najboljši trenutek zanj in da ima sedaj 95% dobre možnosti. Kljub temu, da ima še rane v ustih, da ni prekinil nobene terapije, je ustrezen kandidat za operacijo.

Seveda dr. Mishaly je bil tukaj in nekoga je moral operirati.

Ob 8. uri so ga odpeljali v operacijsko in tedaj se je začelo tisto dolgo čakanje.

Čakala sva ga zunaj pred operacijsko. Dr. Mishaly je dobro uro in pol prej zapustil operacijsko sobo.

Okrog 15.30 ure je prišel naš kirurg dr. Blumauer in rekel, da je Alen v redu, veliko je krvavel, ampak je dobro prestal poseg in da bo vse v redu.

Nato sva čakala na Alena.

Šla sva z njim v intenzivno, nakar je intenzivist, ki ga je pripeljal, pristopil do mene in mi rekel, da bo lahko šlo nekaj zelo hudo narobe, ker je videl med posegom, da nekaj ni bilo v redu.

Kako, sem se spraševala, a mi je kirurg lagal?

In res, Alenu se je stanje zelo poslabšalo, komaj so ga obdržali pri življenju. Dobil je akutno odpoved ledvic, jeter, sepso, povišan utrip in mali infarkt. Tedaj je bil tako blizu smrti, zdravniki pa niso vedeli ,kaj storiti, saj je bil Alen za njih velika neznanka, kot so mi sami rekli.

To pomeni, da za takšne primere, kot je Alen niso imeli usposobljene ekipe in ni bilo tistega kirurga , ki ga je operiral. In nenazadnje niso imeli še nobenega takšnega primera kot je ALEN. Verjamem, da so se trudili, da bi mu pomagali, a če nimaš znanja in prakse, je to zelo težko doseči.

Vendar je Alenova volja bila močnejša od vseh teh tegob in presenetil je zdravnike in se nekako pobral.

Iz UKC CIT oddelka so naju po osmih dnevih preselili na otroško intenzivno nego .

Še vedno je imel dializo, visok utrip, padec pritiska, bruhanje, voda se je še zmeraj nabirala pri pljučih, zato je imel dva drena.

Po dobrih 14 dneh mu je po drenu naenkrat pritekla kri.

Takrat ga je naš kirurg dr. Blumauer hotel spet operirati. Rekel, je da je lahko pri srcu ostala kakšna rana in da jo bo on zašil.

Z njegovo odločitvijo se niso strinjali zdravniki na intenzivni in takrat so se vpričo mene in Alena tudi sporekli.

Eden bi ga operiral, drugi ne in komu naj dam prav, če se ne razumem v te stvari.

Nazadnje ga le niso tedaj operirali, saj naj bi bila to kri, ki je ostala po operaciji v telesu.

Po treh tednih, ko smo izgubili upanje, da se bodo ledvice sploh še popravile, nas je spet presenetil. Alen je začel odvajati urin. Kaj naj rečem, bili smo tako veseli, da je končno začel lulati .

Točno za božič sva bila premeščena na oddelek, kjer je končno lahko ujel ritem spanja.

Vendar so dreni še vedno ostajali, voda se je še zmeraj nabirala pri pljučih in se ni in ni hotela ustaviti. Vse to je spremljalo tudi bruhanje, bruhal je že od same operacije. Vzroka niso našli.

Tako sva morala počakati dober mesec na dr. Mishalya, kaj bo on rekel.

Predlagal je terapijo 24 ur brez vode in hrane. Težko je bilo zdržati teh 24 ur, ampak Alen je imel voljo in moč, ker je mislil, da se mu bodo iztoki le ustavili.

Vendar naju po 24 urah nihče več ni prišel pogledat, kakšno je stanje. Alen je bil žejen in lačen, a so pozabili na naju. Kirurga sta odšla operirat in midva bi morala čakati, če ne bi jaz prosila in tečnarila, da naj pokličejo v operacijsko in vprašajo kako naprej.

Ta terapija se ni obnesla in dr. Mishaly naju ni prišel več pogledat, čeprav je bil tri dni še tukaj.

In spet sva čakala, med tem časom so mu odvzemali tekočino za piti, en dan je imel dieto, drugi dan ne, merili so urin in ga dobesedno izsuševali. En zdravnik je povečeval dozo Edemida, drugi mu jo je zmanjševal. Vrteli smo se kot v začaranem krogu.

Potem so naredili kateterizacijo in ugotovili, da nima narejene luknjice pri srcu, da kirurgi niso opravili svojega dela do konca. In spet je prišlo do prerekanj, eden je rekel, da je vse naredil, drugi je potrdil s preiskavo, da tega nima.

In tako je moral Alen spet na reoperacijo.

Takrat jim več nisem zaupala, obrnila sem se na Društvo srčnih otrok, ki so mi pomagali, da bi Alena operirali v tujini. Res obvestili smo vse možne institucije, da nam pomagajo.

In res, imeli smo rešene že vse papirje, da bi šli v tujino, ko nam je zadnji dan to preprečil dr. Geršak.

Takrat nas je klical kar trikrat, da naj prideva k njemu. Mislila sva, da nama bo kaj svetoval glede zdravljenja v tujini.

Potem pa šok. Rekel je, da Alen mogoče ne bo prenesel tako dolgega poleta in da mu s tem samo ogrožava njegovo zdravje.

Da vse, kar delajo tam, delajo tudi v UKC Ljubljana in da če gremo sedaj, bomo ogrozili program srčnih otrok in nihče se več se ne bo hotel tukaj operirati.

Da je zanj najboljše, če ga pride dr. Mishaly operirat sem, in da bo ostal kakšen dan tukaj, če bi prišlo do zapletov, ter obljubil Alenu najboljšo oskrbo.

Nismo se vedeli odločiti, strah nas je bilo, da bi Alenu škodili. Spraševala sem druge zdravnike, ki so nama prej svetovali, da naj gremo v tujino, kjer bo imel Alen ob sebi vedno strokovno ekipo, vendar so tudi oni rekli, da bi bilo bolje, da ostane tukaj. Tudi oni so bili pod pritiski.

Tako so ga 28.1.2013 reoperirali v Ljubljani. Po posegu je dobro okreval, dr. Mishaly je po posegu takoj odšel.

Tudi tokrat se iztoki niso ustavili, le zmanjšali so se. Alen je bil še vedno na dieti in pil je na 24h lahko le 1200ml. Ni smel spiti več, pa čeprav je bil je vedno žejen in lačen.

Potem so se iztoki le nekoliko zmanjšali in odločili so se, da drene vzamejo ven.

Tedaj sem jih vprašala, če so trdno prepričani, da jih vzamejo ven, da jih ne bodo potem spet dajali nazaj. Rekli so, da nima smisla, da jih ima, če mu ne teče več.

In tako so mu jih vzeli ven, vendar ne za dolgo. Z ultrazvokom so ugotovili, da se je tekočina spet začela nabirati pri pljučih. Med preiskavo pa so našli še strdek, ki pa trenutno ni ogrožal njegovega stanja, zato se z njim niso obremenjevali.

Komaj se je rešil teh cevk, spet jih je dobil nazaj. Tedaj nisem hotela podpisati nič več, saj je vse, kar so naredili, šlo narobe. A vendar sem morala, saj bi ga zadušila ta voda pri pljučih.

Takrat je Alen rekel, da noče živeti s temi dreni, da ne zmore več.

Spet je dobil drene in Alen je imel že osem lukenj na trebuhu. Spet sva čakala dr. Mishalya, zdaj že tretjič. Sedaj bi mu zalepil pljuča, da se voda tam ne bi več nabirala. Vsi naši zdravniki so bili proti, da mu zlepijo pljuča in tudi jaz. Ne moreš spodaj nekaj zlepiti, ker ni vzrok spodaj, ampak ga morajo iskati zgoraj, pri srcu. Takrat smo lepljenje zavrnili.

Naši zdravniki so mu med tem časom dali neko novo zdravilo Sandostatin, ki mu je njegovo stanje samo še poslabšalo, potem so mu povečali dozo Edemid in mu dajali največjo dozo 2x po 40mg v žilo, izgubljal je kalcij, kalij in magnezij . Potem so mu nižali tekočine in nazadnje tekočine iskali v hrani, v kruhu, mesu, testeninah, nič ni pomagalo. Nato so se odločili, da mu uvedejo samo umetno hrano.

Vstavili so mu broviack in ga dobesedno stradali. Zdržal je tri dni brez hrane in vode.

Bil je lačen, žejen, pa vse skupaj nič ni pomagalo.

Spet je prišel dr. Mishaly. Prosila sem, da naj vprašajo v druge centre vsaj za nasvet, a so mi rekli, da to tudi delajo. Tedaj sva hotela zapustiti bolnico in obvestiti javnost, ter prositi , da nama naj oni pomagajo.

Vendar so nama tedaj rekli, da imava vso pravico, da greva v tujino.

Še preden sva šla, pa so mu tukaj zlepili levo stran, ker je tako svetoval dr. Mishaly. Vsa tekočina se je preselila na desno stran, čeprav so mi zagotovili, da se to ne more zgoditi. Nateklo je skoraj 700ml, prej pa 300ml. tekočine.

Lepljenje pljuč ni bila ustrezna rešitev.



28. 03. 2013 sva končno odšla v Izrael, prav tja, od koder je prihajal dr. Mishaly in ni prinesel nobene dobre rešitve za Alena.

Najbolj me je presenetilo, da so kar nekaj terapij ukinili, ki so bile pri nas zelo pomembne. Edemida v žilo ni dobival, ker mu s tem lahko samo škodijo, saj je izgubljal vse pomembne elemente.

Clexana ni dobil skoraj deset dni, čeprav je imel strdek, pri nas ga je dobival 2x dnevno.

Tudi nekaj zdravil so zamenjali in na koncu jih je imel že 20 na dan. Pri nas so strogo kontrolirali vnos tekočin in merili urin. Tega tam niso kontrolirali, čeprav sem jih opozarjala na to, saj je včasih bilo urina 200ml, spil pa ni nikoli več kot 1300ml. Kontrolirala sva sama zase.

Sprva se nama je zdelo, da so se zelo zavzeli za naju, naredili so vse preiskave a potem sva čakala.

Res je, da sva šla tja brez njegove dokumentacije, saj sva imela samo na A4 formatu napisano, kdaj je bil operiran prvič in drugič, ter njegovo terapijo, z izgovorom, češ, da naju tam že tako vsi poznajo.

Pa naju ni nihče poznal in tudi dr. Mishaly naju ni zdravil, saj je bil pri nama v celem mescu samo petkrat, pa še to sva ga trikrat klicala, da je prišel.

Tedaj so našli rešitev, češ da mu zaprejo dve žili in da bo nehalo teči, so bili prepričani. Pa so se tudi oni zmotili. Ni nehalo, iztoki se niso ustavili niti zmanjšali. Potem so ugotovili, da mu pušča cela žila in da je edina možnost, da mu zalepijo pljuča. Dr. Mishaly je rekel, da je to edina možna rešitev, da mu pomagajo.

Alen jim je verjel, saj je bil tako obupan. Sprejemal je vse njihove odločitve, ker je verjel, da mu bodo res pomagali. Tako so mu 5. aprila zalepili desno stran pljuč, levi dren pa so tedaj odstranili.

Bolečine po lepljenju so bile neznosne. Po dveh dneh so spet ponovili lepljenje in 10. aprila so mu tretjič, zadnjič zalepili pljuča.

Iztoki v pljučih so se mu res zmanjšali, vendar se mu je voda začela nabirati v nogah, rokah, obrazu in celo na spolovilu. Pridobivati je začel na teži, tako je v par dnevih prišel iz 52 kg na 60 kg.

Začelo ga je boleti pri srcu, kisik mu je padal ponoči, klicala sva zdravnike, ki pa niso pokazali nobene zaskrbljenosti. Naj počaka do jutri, saj rentgen je tako že imel, je bil njihov odgovor.

15. 04.2013 so mu odstranili še zadnji dren. Alen se mi je zdel iz dneva v dan slabši.

Spet je začel bruhati, saturacija je padala, tudi utrip je skakal iz 90-180, noge je imel vedno otečene in ni zmogel več hoditi. Izgubljati je začel kalij, kalcij, magnezij in beljakovine,vse te elemente so mu dajali v žilo vsak drugi dan.

22. 04. 2013 v ponedeljek so mu zadnjič kontrolirali kri. Tedaj so mu hoteli vstaviti drene nazaj,a je dr. Mishaly rekel, da ne bo potrebno.


Od tega ponedeljka nisva imela več nobene kontrole. V četrtek 25. 04. 2013 ob 12. uri so nama rekli, da lahko greva domov sama, ali pa počakava do nedelje, ko pride naša ekipa z otrokom, midva pa greva potem z njimi nazaj. Morava pa danes iz tega oddelka, iz sobe.

Alen je sam prosil dr, Mishalya, da se ne počuti dobro, da ne zmore sam na letalo, ker ga noge zelo bolijo. Vendar je dr. Mishaly rekel, da je v redu in da lahko greva direktno domov.

Tako sva 25. 04. 2013 zapustila bolnico in se nastanila v hotelu do nedelje. Alenove bolečine pri srcu so se stopnjevale, vendar so trajale le par minut.

Hodila sva nazaj v bolnico, pa so mu samo poslušali srce in govorili, da je vse v redu, sicer pa tako več nisva vodena pod bolnico. Njegove bolečine pri srcu so se pojavile enkrat na dan in tudi ponoči.

Zato sem javila ekipi, ki je prišla v Izrael, da Alen čuti bolečine pri srcu .


28.03.2013 zadnji dan: Alen mi sploh ni hotel povedati, da je kaj narobe, zelo si je želel domov,ker je videl, da mu ne verjamejo več. Nihče nama ni verjel, da se z njegovim srcem nekaj dogaja.

Tako sva se v nedeljo 28. 03. 2013 vrnila domov, zdravnica pa naju je napotila na kardiološki oddelek, čeprav so rekli, da lahko greva domov.


Zadnje njegove besede so bile: " Mama, končno sva doma, zdaj pa lahko mirno zaspiva." In par ur po vrnitvi se je Alenu ustavilo srce.


Ekipa, ki je prišla iz UKC je Alena oživljala. Njegovo stanje se je počasi stabiliziralo.

Spet sva pristala na intenzivni negi. Čeprav je nekaj časa kazalo , da se bo Alen le izvlekel iz vsega tega, ko se mu je srce začelo popravljati, so ga po drugi strani začeli zapuščati drugi organi. Ni več zmogel vseh teh zdravil, preveč jih je bilo.

In strdek, ki tedaj ni bil pomemben, mu je zdaj vzel življenje. Življenje, za katerega se je boril iz dneva v dan, prenašal bolečine, trpel in jokal. Vsa ta njegova volja, vsa odrekanja, vse njegovo trpljenje, vse je bilo zaman.




Hvala vsem, ki ste skrbeli zanj, se trudili, da bi mu pomagali, vlivali voljo, ter ga bodrili. Alen nas je veliko naučil, kako živeti z upanjem, saj nikoli ni pomislil, da se njegovo življenje lahko konča, čeprav je bilo še tako hudo.


Alenova mama


Alen left without saying goodby

He felt that he would leave, a tear dropped his cheek.

On May 16h 2013 our beloved Alen left us for ever. He was only 15 years old. His diagnosis was the hypoplastic of right ventricle. For this diagnosis were planned three operations, but he endured five, he would have had additionnal two, if he had been alive today .

He had his first surgery when he was 4 days old. Doctor Kosin operated him in Ljubljana, and doctors told us parents that he had very little chance of survival. The operation didn't go well, there were complications, so Alen had to be reoperated after five days. He undervent the third intervention when he was 17 months old. Me, his mother and Alen went to Paris. Everything went smoothly there in Paris, we were told that doctors did whatever they could so that Alen could have stayed with but also we were told that one important vein broke when he had been operated in Slovenia.

Since then, he had no heart problems, until his 14 years of age. It was then that the saturation began to fall, he got the arrhythmia, and once he even collapsed.

The fourth intervention was planned a year sooner, before the trouble began, but then dr. Mishaly did not operate, he did not have a license, and we had to wait for the operation.

On April 2012 we had to go the hospital due to the heart problems. He was two weeks at the Cardiology Department .

Even then, the UKC (University clinical Center) of Ljubljana did not solve the problems with the surgeon.

At that time Professor dr. Marko Hazekamp from the Laiden University Medical Center came to us. They presented him Alen and he advised the surgeons of UKC to close with catheter first two Alen's vessels, and he said that over half a year later he would do the surgery. Since this would be safer for Alen than to go immediately to the operation, as he would have serious problems with the immediate intervention.

From the Clinical Center we got a document with which Alen could be taken on the same day to Israel to the surgery. Although this document was already ten days with them in the Clinical Centre we were sent away under the pretext that they did not know why we did not get this document sooner.

We were in a big dilemma because cardiologists have argued that there are no need for the immediate intervention, but surgeons, however, claimed that Alen should go to the operation immediately. Of course, we then opted for the easy way out, and extended life to Alen. Thus, before the execution of the fenestrated total cavopulmonal anastomosis the doctors performed percutaneous closure of the azygos and the hemiazygos veins. Half a year passed quickly, Alen became a student, in the logistic school, he loved to attend this school.

On November 23 rd 2012 he was called for the extraction of two teeth. He had to stop taking the aspirin, which he was taking for this intervention five days earlier. After the surgery, I asked if they already have a date of operation, but they told me that this year Alen will not turn to the operation.

On 27 11.2012 at 11 hours they call us from the medical center, that Alen should come to be hospitalized, because the on November 28.11.2012 he would have the surgery.

I did not know what to do . Alen was in school until 15 a.m. Due to Alen's heart problems I thought it was better for him to be operated now, because then again one does not know how long to wait .

We came to Clinical Center at seven in the evening, Alen was second in line for the operation.

All seemed strange to me, Alen still had wounds in the mouth of the operation he had. All the therapy for tooth extraction had to be stopped for five days with therapy, but for such a large operation on the heart nothing was necessary.

That day there was no doctor who could tell me something .

On Wednesday 28.11.2012 Alen call us in the morning that the doctors made change and he will be first in line for the operation. We come immediately to him and my fears were stronger, my intuition told me that something would go wrong

I still remember how scared Allen was sitting on the bed asking me whether he really have to undergo that surgery.

Just before the surgery, the surgeon came and told me what he will do to Alen and what can happen.

That was then I suddenly said that I will not allow Alen to go to the surgery, we would go home because it was all happening so fast.

Then the surgeon started to convince me that it is now the best moment for him, and now he has 95% chances that all will go well. Although, he has still wound in the mouth, he did not break his therapy, and is a suitable candidate for surgery.

Of course, dr. Mishaly was here and someone had to be operated.

At 8 a.m they took him into surgery and then that long terrible wait began.

We waited for him outside before the operating room. Dr . Mishaly abandoned the operating room a good hour and a half earlier.

Around 15.30 our surgeon dr. Blumauer came and said that Alen was okay , althouh there was a lot of bleeding , but Alen endured surgery well and that everything will be fine.

Then we waited for Alen .

We went with him intensely, and then the intenzivist, which brought him, approached me and told me that something went very wrong, because he saw during the procedure that something was not right.

How, I wondered, did my surgeon lie?

And indeed, something went wrong with Alen, the situation has deteriorated dramatically, doctors just kept him alive. He got an acute renal failure, liver, sepsis, increased pulse and a small heart attack. Then he was so close to death and the doctors did not know what to do, because Alen was a big unknown for them, as they themselves were saying.

This means that in such cases, as Alen's was they do not have a skilled team and there was no enough qualified surgeon who could operated him professionally enough. And last but not least they did not have such a complicated case yet. I believe that they tried to help him, but if you do not have the knowledge and practice, it is very difficult to achieve something.

However, Alen's will was stronger than all these troubles, he surprised the doctors and somehow he stayed alive.

We moved from UKC CIT department to a children's intensive care unit eight days later.

He still had dialysis, a high pulse, pressure drop, vomiting, water was still accumulating in his lungs, therefore he had two drains.

After more than 14 days blood suddenly ran through his drains.

It was then that our surgeon dr. Blumauer wanted to operate Alen again. He said that it can be that some wound remained on the heart and he would put a stich on it.

Doctors at the intensive care did not agree with his decision and then, they quarreled in front of me and Alen.

One would operate others would not and I wandered who was right I understand these things.

Finally, they did not operate Alen, since it was the blood that remained in the body after surgery.

After three weeks, when we lost hope that the kidneys will function at all, we were surprised again. Alen started to discharge urine. What can I say, we were so glad when Alen finally started to pee .

Exactly for Christmas Alen and I were transferred to the department, where he was able to catch the rhythm of sleep.

However, drains still remained, the water was still accumulating in the Alen's lungs and it did not want to stop accumulate. All of this was accompanied by vomiting, Alen vomited from the surgery on. The cause of it was not found.

So we had to wait a month for Dr. Mishaly what he will say.

He suggested 24 hours therapy without food or water. It was difficult to withstand these 24 hours, but Alen had the will and power, because he thought that he will stop the discharges.

But after 24 hours, noone came not see what the situation was. Alen was thirsty and hungry, but they forgot us. Surgeons went to the surgery and we had to wait, but I was annoing and all the time beging to call to the operating room and to ask what would happen to Alen. The therapy of dr. Mishaly did not work, but also he ignored us as he did not come to visit us and to see Alen's medical state, also he was stiil three days present at the hospital if not I would have hounded me and asked that the call to the operating room and ask how to proceed.

This therapy did not prove successful and dr. Mishaly did not come over to see Alen, although he was still there at the hospital for three days.

And again we waited, during which time he was not allowed to drink, one day he had a diet the other day not they measured Alen's urine and they were literally draining him. One doctor has increased the dose of Edemid whereas the second one descreased the dose. We were in a vicious circle.

Then they did catheterization and found that the surgeons made no tiny hole in the heart that is the surgeons did not do their job until the end. And again there was a quarreling, one surgeon said all was done, the other confirmed by the investigation that the work was not done properly.

And so Alen had to be reoperated again.

At that time I did not trust them more, I turned to the Association of Children with Cardiac Deseases, that helped me to send Alen to a surgery abroad. We informed all possible institutions beging to help us.

And indeed, very soon we got all the paperwork necessary to go abroad when on our last day dr. Geršak came and told us not to go.

He called us three times to come to him. We thought we would be advised about the treatment abroad.

Then I was shocked. He said that Alen would not be able to stand such a long flight and that his health was in danger if we would go to a treatment abroad by plane, he would not stand the long flighby plane. He told us that all what the doctors do abroad can be done also in Slovenia and he also said that we would, by going abroad endanger the programme of the childres with cardiac deseases. If we go abrod nobody would want to be operated in Ljubljana, said at the end.

It would be best for Alen told us dr. Geršak that dr Mishally comes to Slovenia, and he would stay in the case of eventual troubles. Dr Geršak also promised the best care to Alen.

We did not know as how to decide, we were afraid to jeopardize Alen's health . I asked other doctors who have previously advised us that we should go abroad, where he will Alen bugger professional team , but they also say that it would be better to stay here. They too were under pressure.

Thus, on January.28h.2013 Alen was reoperated in Ljubljana. After the surgery he recovered well, but dr. Mishaly left immediately after the operation.

This time Again, the effluent did not stop, it only decreased. Alen was still on a diet and within 24h hours he drank only 1200ml. He was not allowed to drink more, even though he was always thirsty and hungry .

Then the effluents slightly reduced and doctors decided to take the drain out.

Then I asked the doctors if they strongly believe that the drain should be they ataken out, and whether that they would not give it back again. They said it did not make sense to have them, if it nothing is running through the drain anymore.

And so they took the drain out, but not for long. Ultrasound found that the liquid is again started to accumulate in the lungs. During the investigation, they found a clot, which was not a jeopardize for Alen so they paid no attention to the clot.

Alen barely got rid of these tubes and now doctors wanted to put them back. At that time I did not want to sign for any surcical intervention, because everything they did was wrong. Yet I had to sign again for the intervention because Alen was suffocating due to the water in the lungs.

At that time, Alen said he did not want to live with these drains, not anymore .

Again he got the drain so they made eight holes in the Alen's abdomen. We were still waiting for dr. Mishaly, now for the third time. His proposal was that Alen's lungs should he sealed so that the water would no longer be accumulated in alen's lungs. All of our doctors were against his proposal that is against the lungs sealing. You can not seal something that is not the cause of the heart desease, you should look above, the cause lies in the heart. Then we rejected the lungs sealing.

Our doctors gave to Alen a new drug Sandostatin and this drug only worsened his condition, then they increased the dose of Edemid giving him the maximum dose of 40mg 2x in a blood vessel. Alen was losing calcium, potassium and magnesium. Then the doctors lowered liquids quantity and they were looking for the liquids in food in bread, meat, pasta -nothing helped. Then they decided to impose the artificial diet food.

They gave him broviack and literally made him starve. He had to stand three days without food or water.

He was hungry, thirsty but nothing helped.

Again came dr. Mishaly and I asked him that he should to consult other medical centers, at least for advice, but they told me that they do so. Then we wanted to leave the hospital and inform the public, and ask that they help to us.

However, we were then told that we had every right to go abroad.

But before we went, the doctors sealed Alen's left side acording to the advise of Dr. Mishaly. And his advice was not right one as all the liquid has moved to the right side, although I was assured that this can not happen. Almost 700ml of liquid accumulatred, 300ml of liquid accumulated before that.

Lung sealing was not an adequate solution.

On March 28 2013 we finally went to Israel, to dr Mishaly homeland but unfortunatelly dr. Mishaly did not propose any good solution for Alen.

I was unpleasantly surprised as some of Alen's therapies were abolished also the one that were very important to us. Alen was not given Edemid into a vein, the doctors told us it can only do damage to Alen because he was losing all the important elements.

He was not given Clexane almost ten days, although he had a clot, in Slovenia he was receiving it twice a day.

Also, they changed some drugs at he end he was receiving 20 diferent ones a day. In Slovenian hospital Alen was strictly controlled as for the fluid intake and urine criteria. In Israel that was not monitored, although I draw attention to this, because it used to be 200ml of urine, although Alen never drank more than 1300ml . We then decided to do the control by ourvelves.

At first it seemed to us that the doctors did all their best for us, indeed they did all the inquiries but then we waited.

It is true that we went there without his documents, because we had only A4 paper and on the paper it was written when he had his first and second operation, and Alen's treatment, on the pretext that everyone knows us in Israeli hospital.

However, nobody knew us and even dr. Mishaly did not treat Alen sufficiently as he has been with us only five times a month, and even then I called him three times to come to see Alen.

Then they find a solution, saying that they will close two blood vessel and that it will cease to run, as they were convinced. However, they were wrong, as it did not stop to flow, the effluent was not stopped nor reduced. Then they discovered that all the Alen's vein was leaking and that the only option was to stick his lungs. Dr. Mishaly said that this is the only possible solution to help him.

Alen believed the doctors, as he was so desperate, that he accepted all their decisions, because he believed that they would really help him. Thus on April 5th they sealed Alen's right side of the lungs, and they removed the left drain .

Pains after lungs sealing were unbearable. Two days after, the lungs sealing was repeated and on April the 10th he had had his third lungs sealing.

Effluents to the lungs really reduced, but water began to accumulate in the legs, arms, face and even in Alen's the genitals. He started to gain the weight, so in a few dayshis weight augmented from 52 kg to 60 kg .

Alen had sore at heart, oxygen dropped during the night, we called doctors who did not show any concern . Alen should wait until tomorrow, as he already had X-rays record was their response.

On April 15 2013 the doctors removed Alen's last drain. He seemed worse from one day to another.

Again he began to vomit, saturation has decreased, his pulse jumped from 90 to 180, his legs were swollen and he could no longer walk. He started to lose potassium, calcium, magnesium and proteina, he was given all these elements to a vein every other day.

On Monday, April 22nd doctors inspected Alen's blood for the last time. At that time, the doctors wanted to insert drains back, but then dr. Mishaly said it would not be necessary.

From this Monday on we had no control anymore. On Thursday April 25th at noon , we were told that we were able to go home by ourselves, or wait until Sunday when our team comes with a child to be operated, and then we are going to return to Slovenia with them . Also we must leave today this section of the hospital.

Alen himself begged Dr.Mishaly and told him that he was not feeling well, that he could not return on because of strong feet pains. However, Dr.Mishaly said Alen was okay and that we could directly go home.

So on April 25th 2013 we left the hospital and settled into the hotel until Sunday. Alen's pain in the heart increased, but fortunately they lasted only a few minutes.

We went back to the hospital, but there they only listened to the heart and said it was all right, and they also told us that Alen is no more registrated as the hospital patient. Pain in his heart appeared once a day and also at night so I informed to the Slovenian medical team that came to Israel, that Alen was feeling heart pains.

28.03.2013 last day: Alen did not want to tell me that something was wrong, he wanted to go home because he saw that nobody believes him anymore. No one believed that Alen had pains in his heart, that something was happening to his heart.

So on Sunday April 28th 2013 we returned home, and the lady doctor told us to go to the cardiological department, although Alen was said he could go home.

His last words were : " Mom, we're finally home, so we can go to sleep now in peace " And a couple of hours later Alen heart stopped.

The team that came from UKC Ljubljana animated Alen. His condition slowly stabilized.

Again we ended up in the intensive care. Although it seemed that Alen would pull out of all this and that his heart begun to repair, on the other hand other organs of his begun to misfunction. No longer was he able to take all these drugs , they were to many for him.

And a clot, which then was not important, now took his life. Life for which he fought from day to day, endured pain, suffering and crying. All that will of his, all the sacrifices, all the suffering, all that was in vain.

I am grateful to everyone who cared for him, trying to help him, and encouraged him. Alen taught many of us how to live with the hope as he never thought that his life may end like this, no matter how painful it was.

Alen's mum




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