Thursday, August 6, 2009

Vincentio's story / The Saga Continues

After the paramedics arrived and stabilized V he was transported to the nearest hospital which wasn't exactly used to handling children. They were great about making sure he was comfortable and his vitals remained stable. They did perform a series of chest x rays which showed his heart to be enlarged and fluid in his lungs. The ER doctor was fairly confident that he was suffering from pneumonia and began IV antibiotics.

Soon after they called Arnold Palmer and requested that he be transported by their mobile ICU as soon as possible. Unfortunately, there was only one vehicle at that time and it was all they way in North Florida on another emergency. We were told that it would most likely be several hours and for the ER to call again if his condition began to deteriorate.

After six LONG hours he was finally transported and he was directly admitted to the pediatric intensive care unit. The PICU allowed us back with him after about 30 minutes and the doc was waiting to explain the reality of what had happened.

V was in fact in massive congestive heart failure. His heart was very enlarged, his liver and lungs were full of fluid. He commented several times that we were very lucky that this happened during the daytime when we were able to see it . If it had occured at night he probably would have passed away while we slept.

After a week in PICU and with many new meds on board, we were discharged home and advised to see his cardiologist within the next two days.

Dr. D (our cardiologist) had us in the next morning and rechecked his weight and vitals. Even with some residual fluid still in his organs he was weighing in at 5lbs 8oz. Much smaller and younger at barely 5 weeks old than she had wanted him before surgery.
She upped his dose of digoxin and lasix and told us to return in one week for a follow up.

At our next appointment it was determined that his lungs and liver were not responding well, despite the meds V was still struggling. His weight was down to 5lbs 3 1/2oz and he wasn't breathing or eating well. She increased the digoxin again, to the maximum allowable dosage, and increased the lasix plus added another diuretic as well. She told us that his meds were now maxed out and the next weeks follow up would be the deciding factor as to how we would proceed.

That next week his weight was down again to 5lbs even. His breathing was extremely labored and his color was worsening by the day. As soon as Dr. D entered the exam room she turned around and left again. Moments later she returned to tell me that she had called for the mobile ICU for transport to the hospital again. She said he would be admitted to PICU again and would spend the next several days being stabilized for surgery. Doing it now was definitely more risky but we had no choice, he was dying.

Four days later, after many, many IV meds and tube feedings to help him gain some strength, he had his heart repair. It was November 8, 2005 and he was 7 weeks old.

The day before surgery he had many blood tests done due to the fact that he would require transfusions and to prepare for the surgery in general. The morning of the procedure Dr.D approached us about signing a form allowing a bone marrow aspiration to be taken from his sternum when it was opened.
His blood differential was again way out of whack and they were beginning to question the possible onset of leukemia.

We agreed and he was carried away to surgery a few moments later. We were stunned and numb somehow all at the same time.

More to come...


  1. Ah, every time it gets good I have to wait. Did he have his full AV canal repair at that age? That definitely is a lot for a tiny baby. They told me when Jax was born, if he was in heart failure they would do a PA band. Its open chest but they don't cut into the heart so its a lot less invasive,and it makes it so they can grow bigger. Isn't it funny how different hospitals do different things. If we move out of state it will be hard to get used to a different hospital.

  2. WOW, I know this isn't the end of the story but I can't imagine what it was like for you guys, even little Vincentio, to go through all of this. How scary to hear that, thank goodness, this happened during the day?

  3. What an absolute doll Vincentio is.Been through so much ... like someone else I know!These little ones never cease to amaze.I love your quote at the top ... I am a quote addict ... mind if I steal it?Have a great weekend.