Vincentio's Story / The Continuing Journey

V's open heart surgery took around 6 hours to complete and when we were called back to the cardiac intensive care unit we were incredibly relieved. His repair was successful. He was lying naked in a tiny bed covered by a warming light. His nurse was waiting in the room as we arrived to help explain what we were seeing. Although I did have some extensive experience working in a hospital, seeing all that equipment on your own child is just completely different.

The nurse calmly explained every tube and wire, beginning on his head and working toward his feet. He was kind and took all the time we needed to be comfortable with what we saw on our son. We were advised that the bone marrow sample was collected and that testing would take about two weeks.

He would remain in the CICU to recover for as long as he needed to be free of all equipment and major pain meds. They also wanted to see him tolerating feedings well too. They said it would probably be around ten days.

The CICU staff was wonderful, not that the others in the hospital weren't but up until now so much emphasis had been placed on helping us "adjust" to our son's genetic diagnosis. Strangely enough I was never sad or angry. I never once had a "why my child?" moment. He was just my son. Whatever package he came in, I was elated to have him.

Don't misunderstand, I know everyone handles these things in their own way, and they are entitled to their feelings. It's a natural process and there's no right or wrong way to go about it. But so many people were focused on the down syndrome that I began to get angry that they weren't more focused on his health. If you want to feel sorry, feel sorry that his heart is sick, feel sorry that he can't breath well enough to even eat. Feel sorry that at 5lbs he has to have his chest cut open and his heart stopped and there's a very real chance that he won't survive it all. Feel sorry for what might kill him, not for what he has to live with. As far as we were conserned down syndrome was something we could deal with, losing our son was not.

.... back to the story....

I was stunned and really impressed that he was off the ventilator that same day. He was off morphine and fentanyl within two days. The third day he was eating well and only requiring tylenol for pain. He was a different child. Born again.

That night I felt comfortable going home to sleep for once and the next morning I awoke to a phone call from the CICU that V was being discharged! Are you sure you're talking about MY son? He only had major open heart surgery four days ago!

Yes, he had successfully met all the required milestones and was exceeding them! He was ready to go!

Seriously???

Seriously.. later that evening, day four of recovery, our baby was home. He was warm and pink, he was breathing (without sounding like he had a chest full of gravel), and most amazing of all. He was awake and hungry.

We were still very nervous about the impending bone marrow results but each day that passed without word made me a little more secure that things were going to be alright.

Around ten days later we received word from the hospital that his bone marrow was clear. Once again this mysterious blood issue has resolved itself. They were referring to it as "transient leukemia", which is when the blood differential appears to be leukemic but resolves without treatment.

We were advised that childern with Ds were more likely to develope leukemia and those with "transient leukemia" were at a much greater risk.

Something we would need to watch and be prepared to deal with in the future if necessary.

Unnerving to say the least, but I was happy to have him home and healthy.

This was November. For several months Vincentio thrived, it was an absolutely amazing transformation, he was so alive in every sense of the word.

By January 2006 we began to see some disturbing changes starting to happen. V still had a hearty appetite, but now most everything he ate came back up. His breathing was also not as easy as it was before.

Dr. D was quick to check for the return of CHF and impaired heart function but this was not the case. She referred us to a pediatric surgeon due to the fact that it wasn't a cardiac issue. Plus, he had developed what appeared to be a bulging hernia at the base of his chest incision.

The surgeon (DR.P) said that the hernia looked to be simply a cosmetic issue from tissue not closing properly after surgery and he would prefer to close it when V was older. After several tests he also diagnosed the vomiting and breathing problems as being reflux related and V began acid reducers and a motility medication.

Aside from alot of puke and ruined clothes, he was holding his own until later that summer. In the summer he caught what seemed to be a bad chest cold that would not let up. After a visit to his pediatrician who found his O2 saturation to be only 86% after two breathing treatments, we were sent to the ER. He was given more nebulizer treatments and several tests. They came back showing that V had RSV. He had his last synagis shot only two months before and it was decided they were no longer needed. They were wrong.

He spent 10 days in the hospital and after the RSV tests came back negative we still could not get him off oxygen. Clinically he was getting much better but he still required a full 2 liters of O2 to keep his sats up. It was decided that he would be discarged with O2 at home. Before the discharge could be processed he had to have a chest x-ray to confirm that the RSV was gone.

We weren't overly worried until I walked by the nurses station and was stopped. His nurse told me that he would not be getting discharged anytime soon. Of course I asked what had changed and she said that she couldn't tell me anything more until the doctor came in.

That was the wrong answer...

Needless to say, after some not so subtle threatening, she advised me that all she could do was read me tha progress note in his chart. It stated that his chest x-ray showed "an enormous mass" at the base of his right lung.

Me: "What does that mean??"

Nurse: "I'm sorry I can't say any more, you're going to have to wait for the doctor."

Me: "What???"

Nurse: "I wish I could tell you more but I really don't know."

Please stay tuned for the next exciting chapter in the life of my littlest love ......

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To Heather, I would be honored to have you steal one of my quotes. After all, it was inspired by one of the strongest little men I've ever known.