It´s now been 3 days since the initial shock and I think we are all doing a little bit better...just a little...but it's better than nothing ;o) I finally have some energy to sit and write down here my emotions and feelings again...This is like a diary to me and it helps me a great deal...
We are still trying to deal with our new reality the best we can...everything is still so fresh... we have prayed, rested, reflected, talked, cried, hugged each other and especially hugged Luca very tightly several times...still not easy...and I think it will never be until this is all done, but we have to keep our feet on the ground and our heads up high the best we can to face this next phase of our lives...again, we have no choice!!!
Time and our strong love for Luca will help us to keep fighting... I write this with a knot on my throat and tears in my eyes but I can´t let those emotions take over me, I know.... It´s hard for me to sleep at night, to really rest, to really be at peace, to really understand what happened, to really forgive, and to distract myself from all this...I am trying REAAAALLY hard and eventually I will get there... Probably only after this next surgery is done and behind us, when Luca is all recovered, running around with his braveheart and smiling again all healthy and looking beautiful! I can´t wait for that day to come...
Now I can´t cry anymore over spilled milk...the crap already hit the fan and we need to think ahead and to move forward...
So the new diagnosis is called: "
Partial Anomalous Pulmonary Venous Return - PAPVR". A long name that in very simple words basically means that a couple of his smaller veins coming from his lungs carrying already oxygen-rich blood go back to the lungs again instead of going to the rest of his body. These 2 anomalous pulmonary veins carry blood from the lungs to the right side of the heart (which pumps blood back to the lungs), rather than to the left atrium as in the normal heart (which pumps blood to the rest of the body). Does all that make sense? So basically if left unrepaired, this can reduce the efficiency of his circulatory system and may cause difficulties later in life. This increased blood flow to the right heart muscles may cause enlargement (dilatation) of the right atrium, right ventricle, and the pulmonary artery. Also, if not fixed, Luca may get tired easily with exercise and he may even experience arrhythmias, or, more rarely, right heart failure and pulmonary hypertension. So I guess we need to treat it, right? ;o) When we start looking at all the possible greater problems that he might have to face later in life if left untreated we surely want to resolve all this right away... my poor little baby ;o(
Anyways...we know he WILL be ok and WILL surpass all this once again....he is a warrior, a strong little man, a fighter, an example to all...it's just the thought of seeing your baby suffering again in a hospital bed with 1 million little tubes, machines and wires hooked up to him and a fresh new scar again that takes up his whole sternum that make us sit down and cry... no child should ever have to suffer like this and no parent should ever have to see such sufferance... ;o(
Thank you guys SO MUCH for all your encouraging notes, emails, phone calls, text messages... I have not had the energy to reply to all of them individually yet but slowly I am getting there...
With much love,
Heloisa