baby Weston has died, family still in need of prayers to get through this difficult time.

[link to www.sanduskyregister.com]

Weston Joseph Vassallo
Sep 7, 2011 - Mar 13, 2014
SANDUSKY

Weston Joseph Vassallo, 2, of Sandusky, passed away in his mother's arms as he received his angels wings late Thursday evening, March 13, 2014, in the Cleveland Clinic, Cleveland, from a rare congenital heart defect called hypoplastic left heart syndrome.

Born Sept. 7, 2011, in Cleveland, he was the son of Anthony Joseph Vassallo and Emily Lynn Appell.

He was also survived by three sisters, Kaitlyn, Savanna and Lola Vassallo; his big brother, Braden Vassallo





New Update 2-25-14 "Ok, well today we're on to a new battle...one of the profusion of the kidneys and liver.

I'm waiting for nephrology to come and tell me our options. When Weston extubated himself, his heart was forces to work harder, which can lead to poor profusion of the kidneys and liver.

We're going to run another RFP (renal function panel) this afternoon to see if his function is getting better or worsening. I'm an absolute mess today...I'm terrified they're going to tell me he's in renal failure.

I know there are a few options...but I don't want them to tell me he needs dialysis. Please pray that my baby's numbers improve throughout the day just simply because he's on the ventilator again.

I can't take any more bad news. Please pray for something good. God please. I beg."

New update-- 2-19-2014 "Weston's doing pretty well today...just has a full belly and had a fever overnight last night."

"Other than that, though, he looks awesome today. We're keeping watch over the belly...and waiting patiently by his stinky bedside for something to come out. . Definitely happy to have his mommy and daddy back, and we're glad to be here."

Update 2/5/14

We had a great day today. One of the best in awhile, in fact. Weston had some great PT, sat up for two hours, and was very tired after, but slept for awhile and was awake for quite some time, too, watching tv and looking at mommy and daddy.

I'm thanking God for this, as I really needed it to re-energize and stay focused on the goal...to remain stroke free (which is still of primary concern), get back on the list, and come home. It's going to be a very long road but one that I'm begging God daily to let me travel.

For the first time in quite a few days I'm feeling like I can breathe without the threat of a panic attack.

In talking with my favorite CNP today (for an hour or more) I've learned that Weston is sick, but he's doing about as well as we can expect him to, and if everything stays the way it was today or improves, we will be back on the list March 12th.

She told me that when she got the call about the transplant being cancelled, she cried...and could only think of me and if she was feeling so terribly she could only imagine my pain. I'm thankful my team is on my side and sees us as people, not kidneys, a heart, or a brain.

Anyway, Circle it, pray for it, wish on a star for it...if we all band together-maybe-just maybe- it can happen. We are having our meeting tomorrow with everyone involved to make sure we all are staying centered with the goal and big picture.

Thank you for all of your kind words...and your prayers. You have no idea how you've each individually made an impact on us. We read each and every comment, and though it's impossible to respond to them all...We hear you...and feel your faith. You have no idea how comforting you have all been and continue to be. Thank you.


Update on page 3 New video of Weston at facebook page and this link:

[link to www.facebook.com (secure)]

Weston Vassallo had his families hopes up, he was supposed to get a heart transplant yesterday, but a nurse discovered he had had a stroke which took him off the list.

Heartbreaking story, everything is on this link below. I don't know the family personally, but it was in my in box this morning.

[link to www.facebook.com (secure)]

" Weston's condition is worsening, and we will need a heart soon or we'll need to explore the option of a Berlin heart while we wait. Also, the pump that was giving him morphine malfunctioned and gave him 20x the amount of what he was supposed to get, so we're thankful he was already on the ventilator or it could have been a huge problem. He also had a blood transfusion bc his red blood cells were low. He is starting to look slightly better, as this morning he was gray. Please keep the prayers coming."

Please pray for this beautiful child and his family.

:vassallo:

New--just in from Weston's mom one hour ago--(Thursday evening)

UPDATE Feb. 2, evening:

"Ok, so Weston's running a fever again, which has me in a tizzy. He gets up to 104. They've tried Tylenol and then reluctantly Motrin...which made it come down a fuzz but then started going back up. They're going to do three cultures, urine, blood, and respiratory to be sure he's not got an infection. They are starting antibiotics to be safe. We will know more in the morning. Thank you for the continued prayers."

"Sorry it's been so long since I've updated...things have been pretty crazy around here. Today was a much better day than yesterday...while that's not setting the bar very high, it's something.

We did a CT scan this morning (again) to ensure there was no more damage done through the night last night before they started Weston back on his anti-coagulation med, heparin.

He needs this to prevent another clot (which could lead to another stroke), but at the same time they end to balance it "just right" so it doesn't cause any bleeding on his brain.

There isn't any at this time, and from what they tell me it could have been a series of events leading up to this, and something small triggered his reaction yesterday.

We did the EEG leads all night with no signs of seizure, so that's good news. The leads are off again, for now.

On a positive note, I can see some steady improvement in Weston's motion in the right extremities. While it's nowhere near his normal, Anthony and I are thrilled that he's responding to me pinching his toes (he wiggles them) and when I put the taggie from his blankie in his right hand, he weakly tries to find it.

He was awake quite a bit today, and they started doing some physical/occupational therapy for a few minutes a day to try to recover from the stroke. From what the neurologist (who is a huge pessimist) says, there is no telling the extent of the damage this soon.

There have been children that have recovered remarkably, and the opposite. As far as dr. Boyle is concerned, we still have hope. I asked him to level with me, and he says when there is none he will say so. For now, the focus is to keep Weston from having another stroke, having a seizure, and preventing him from bleeding on the brain...all which are really in God's hands.

When he is healthy enough, and has reasonably recovered from this, he can go back on the list...and it HAS been done before by other children. Lots of them. Maybe not tons, but a decent amount and that is what we're holding on to. As to what we're doing: we cry to each other "in a corner" of the hospital, but when we sit by Weston's side, we put our game faces on.

We hold his hand and tell him how strong he is, and how he's going to beat this and come home-with smiles on our faces and sometimes tears in our eyes. He WILL smile back at me one of these times.

In the meantime, thank you all so much for the continued support. We are leaning very heavily on your faith, because at times it's hard to find it. For that and much else, thank you all. We are eternally grateful.


Last Edited by stillhere on 03/17/2014 01:03 PM