Wednesday Update 10pm

Henry, it has become clearer to me lately, is a mysterious little guy.

Let me clarify my thoughts.

When he was first born, i physically saw his cleft lip and palate. Despite the reassuring words from the delivery doctor and nurses, I still had to come to terms with my newborn's appearance straight from my womb. I spent that night crying and giving myself a pep talk and by the morning, when i held him again, I felt different. Positive. Loving. This little stranger given to me. I could get used to him. He was a keeper.

Later that morning, a somber pediatrician came to my bedside to say a heart murmur was detected in Henry and upon further examination, a more serious condition was diagnosed. Henry had a congenital heart defect that needed immediate care in a facility more equipped than Arnot. That quickly meant Philadelphia and i spent some time crying about that. Just as i had gotten over tears about his appearance, i had a new, less superficial worry to be concerned about.

A few days after being at CHOP, we had a meeting with genetics. It was in that meeting that Ron and i learned about a more determinate factor at play: a chromosome disorder. The very disorder that created these complications in the first place. The root of it all.

And more tears.

More often than not, i hear from MANY of you the sentiments of hope, the wonderings of "i don't know how you're doing it" or "you are so strong." And those are all more than welcome, and oftentimes, more true than not. I AM strong, and i AM realistic. As is Ron. I use the first person in writing this because *I* am writing, but please keep in mind, Ron and i have had MANY MANY open-hearted, deeply introspective discussions on this topic. Good, bad and ugly. Theoretic, realistic, emotional and unmentionable. We are in concurrence with everything related to Henry.

But it is with this most recent visit to CHOP that i'm presented a new outlook. A new perspective. Henry is a MERE two and a half months old. That's it. Just a blip on his overall life. Our overall lives. But in this time, it's occurred to me that Henry is complicated, and will BE complicated and I naively was not prepared for this.

There was something about the discussion i had today with his primary cardiologist Dr. Ravishankar and an attending cardiologist Lisa. They sat with me for quite a while and we talked about everything that has been going on with Henry and what might come to develop. Ron and I, at one time near the beginning, thought that Henry would get his PA Band surgery, we'd go home, and then come back when he's 8 mos. old or so to fix his heart defect for good.

A+B=C. C equals "the rest of his life."

Sure, we had a little genetics defect to deal with, but that was "cool." We'd love him no matter what. So what if he develops a little slower than he should. So what if he looks a little different than his brothers or other kids. So what if he might not talk in a conversational manner. Our greatest hope in this Genetic Disorder Mystery would be that he could smile. We just want him to be able to SMILE at us and to know he's loved and to be enjoying life the greatest way that Henry can know.

Today, in talking with the cardiologists, it sank in, in a paused realization, that Henry might very well be in and out of hospitals (and CHOP) for a lot, if not most, of his life.

His heart is presenting a myriad of complications and mysteries. He likes to 'brady.' We all know this by now. The REASON he does is still somewhat of a mystery. The REASON that he likes to pause sometimes (as in, just today, for 5 seconds) is, as well, a mystery. Right now, there is vague talk about giving him a pacemaker. That would be down the road, not something immediately being visited, but the notion has come up a few times in this visit.

Installing a pacemaker is no small thing. It is NOT minor surgery and the chance of infection is greatly increased. Please remember, Henry is TWO MONTHS OLD. His little 8 lb body is only so big. Also remember that Henry has had two G-tube surgeries. The first one did not work with his physiology, so we moved to the G-J tube. Dr. Ravishankar explained to me that if he was to get a pacemaker, the mere PLACEMENT of it within his abdominal cavity would be somewhat challenging. As in, there's already enough 'stuff' going on inside of him.

The reason we are having to stay another 2-4 weeks is due to a sternum infection in his chest from the first heart surgery he had to place the PA Band, on March 4. This is different than the INCISION infection that brought us back almost a month ago. This is an infection in the bone. The strength of the antibiotic needed to fight/kill this infection can only be administered intravenously. Because of the sensitivity and viability of IVs, there is talk of placing a PICC line. A PICC line (thank you picclinenursing.com -->) is, by definition and per its acronym, a peripherally inserted central catheter. It is a long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

We were brought here, this time around, 2 weeks ago, because of Henry's extreme bradys and desaturations. In the meantime, while trying to figure that out, Henry was diagnosed with rhinovirus (aka the common cold). That complicated matters GREATLY, bringing on substantial heart pauses and increasing his reflux issues. IN THE MEANTIME (keeping up?), his blood was cultured positive for a blood infection and he ran a fever which caused him to throw up 5 times. Feeds were disrupted, bradys continued and Henry experienced an overall malais which broke my heart to see. His eyes watered/gooped up, his cough was literally choking him and he just looked sad and sick.

I was given an analogy, a few times now, that might help you understand the situation to a degree. Imagine a house. There are two main parts: the construction and the electrical. Henry's heart is the construction, which can be fixed with surgery down the road. The electrical is the mystifying bradys. The surgery cannot fix the bradys. Ron and i had thought this the case before. Now i get it. The placement of a pacemaker would be a PERMANENT life-long thing. There is no 'growing out' of a pacemaker.

Today - - well, today, it hit me with a great heaviness, a great sadness, that my third little boy will never be well. If its not the genetic disorder, its his heart. His little heart will never function the way a heart should. And that little heart is going to play all sorts of mean games on innocent Henry. We will always have to be on our toes with him. And what 'scares' me the most, especially in OUR household, is how the simplest of common colds can really be a detriment to Henry. Our house always seems to have a runny nose. How am i to know if that runny nose is allergies or rhinovirus?

Well, there it is. Til next time...