So what´s going on with Luca´s heart NOW???

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

Luca`s cath - 2nd update

Just a very quick update... We are finally home...we left at 3pm and got home at 5pm, the traffic coming back was horrible....well, L.A. traffic at rush hour...

Sorry I did not update any sooner...we had some unexpected issues come up and I simply could not get to the computer...too much going on...

So I have good news and bad news... Good news is that Luca is doing great, the cath went great and he is recovering really well and fast. Bad news is that when they did the angiogram during the cath they have found out that something else is wrong with his heart (will explain later) ... this is something new now that they have discovered and that they did not know from before...b/c of that he will need another open heart surgery in the near future...needless to say we are devastated and we have lost our grounds again... and yes, also asking all kinds of questions why this was not caught before and why was this not repaired with his 1st surgery, why he will have to go thru another major surgery risking his life again for something that they have missed, etc etc etc... we even have a bit of anger in our hearts right now mixed in with all the other emotions...When will all this ever end? It seems like one surprise after the other!

Anyways, we need to keep strong for Luca...and we will, I know we will...b/c as I like to say, being strong is the only choice we have...

In November we will meet with his 1st surgeon again Dr Starnes to find out when this new surgery will have to be done...they are telling us within the next year or so...

I am so physically and emotionally tired and drained right now... We are still not believing this is happening again to our baby... he does not deserve this... I wish I could take his place...But he is Mr.Braveheart and we know that he will be ok no matter what... ;o)

Please keep your good thoughts and prayers coming...we so appreciate them and we so need them right now!

Tight hugs and love to all of you!

Helo ;o)

Luca´s cath - 1st update

Good morning...we have left the house this morning at 4:45am...after driving a few miles my car´s computer tells us that we have a flat tire...what???? You are kidding me! Gaio stopped at a gas station and filled all the tires with air again and everything seemed to be ok then...

Luca was in good spirits this morning and during all the ride to CHLA, he never even asked for any food or milk...it was too early anyways...

We got here quite fast...no traffic...but boy there´s soooo many people driving around so early...

They took us in right away...changed Luca into his hospital PJ´s...measured his height (93cm), his weight (14.4kg), blood pressure, etc etc...then we went into a waiting room where he was so happy and playing with so many toys. He got a tiger and a dino and did not want to let them go. After that, we went into the surgery admitting area where we waited for a little bit...there we talked to a few doctors, signed our lives away (very scary)...and over there also they told us all kinds of horrible things that could potentially happen, etc...thanks a lot, we needed to hear all that...but I guess it´s standard procedure ;o(

Then they gave him some liquid medication for him to calm down and relax a little bit...he almost vomited b/c it does not taste good.... he was already relaxed even before the meds since it was so early and he was watching a tv where they were showing cartoons... After that, one of the nurses came and we kissed him and she rolled his bed away into the hallway... oh boy...that´s when I lost it... I knew I would...that is always the hardest moment for me...so difficult...

Then Gaetano and I left that area like 2 zumbis again not knowing which way to turn...we went downstairs and met my mom there waiting...when I saw her I hugged her and started balling even harder...Gosh this is so hard...

Now we ate some breakfast and we are waiting for some news from the doctors...

Now we have to wait for 2-3 hrs...these are normally the longest hours ever...my heart is beating fast...When I have some more news I´ll try to post again...Thanks for everyone´s prayers!

Kisses and hugs to all,

Helo ;o)

The night before the heart cath...

Here. we. go. AGAIN.....

One more heart procedure for Luca...we thought his 1st one (full repair) would be IT for a lonnnnnnng while but I guess God had other plans... We went in for an echo in the beginning of August and we were told that Luca needed a heart catheterization to open up one of the branches of his pulmonary artery. Right at the point where it splits and it goes into his right lung is too narrow and it needs to be opened up either thru an angioplasty (balloon) or thru a stent. We will only know which one after the procedure.

We are scheduled to arrive tomorrow Tue - Oct 5th at 6am because his cath will start at 7:30am. They are telling us it should last approx 2-3hrs and then he'll have to go to a recovery room for another 4-6hrs, where he'll have to lay down and stay mostly quiet w/out moving his leg too much...yeah, right...Luca? Well, maybe under some medication....ehheh

This procedure is normally outpatient, meaning that we get to go home the same night...they are telling us that more or less we'll have to stay at the hospital for approx 12hrs or so... we really hope to be back home tomorrow night...

Luca cannot eat anything after midnight...and can drink only water up to 5:30am...after that NOTHING! That might be also difficult as he will start asking for milk but hopefully he'll be so tired that he'll sleep most of the morning until he's taken in by the nurse. And that's the moment that I DO NOT look forward to...I remember very well the 1st time and it was one of the hardest moments for me: letting go of my baby to the nurse who will take him in for the procedure.... HARRRRRRRD! I know I will totally ball my eyes out for sure...but by then Luca will not see me anymore until he's in the recovery room...

Anyways, I should be in bed right now...eheheh...it's 11:50pm and we will have to wake up at 4am...

I will try to update this blog during the time that we are at the hospital so everyone can be updated as to what is going on!

Thank you so much in advance for everyone's love, prayers, good thoughts and positive spirits!!

Love always,

The Santospiritos ;o)

Moments of Summer 2010

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