Friday, January 1, 2010

2009: From point A to point B and down from there

The Year In Medicine.

The first 4.5 months of 2009 were really not that bad in terms of The Boy's treatments. I had just left my job (in the hopes of returning; obviously that isn't happening) and was home with The Boy. And by "home" I mean I was at the treatment center twice a week and in every few weeks for chemo. Then we had a "break" for radiation, which was a break because we didn't spend nights in the hospital but not so much of a break because I had to get up at 4:30 AM for a week.

April 20th was when things began to go screwy and we were hospitalized with the first of three port infections. We spent 2 weeks in hospital with the port infection and C-Diff, were out for 2 days in which we had The Boy with a catheter and a pee bag so it isn't like we had any fun (and he was on more BP meds), then back in for chemo. Out for a bit, then back in for leg pain which turned out to have come from high potassium and more hypertension issues. Then more chemo. Then back in for the second port infection. Out in time for the Valerie Fund Walk. Back in for chemo. Then out for a bit.

The third port infection fever took place while I was in labor with Meatball, as you may recall. The arrival of Meatball really complicated things for The Boy, and for us.

But shame on the hospital for making me feel, at every turn, that my second son was a burden and not a blessing. And shame on everyone who did the same.

Side note: I would NEVER recommend that anyone have a baby in this hospital. The fact that I left the hospital still exclusively breastfeeding Meatball was a minor miracle.

Anyhow, we spent another two weeks in the hospital because The Boy's port needed to come out. The arrival of Meatball coupled with hospital policy meant either sneaking him around or just not seeing The Boy too much. Neither of which was very good.

The Boy was hospitalized again to be put on a new hypertension regimen and get his next chemo.

Fortunately, we got something of a reprieve once school started for Musical Daddy in terms of The Boy's overall health and we "only" had to go in for scheduled stuff, which was still quite frequently.

We also learned that The Boy had hearing loss from chemo.

We started planning our move at this point, not really knowing when it would happen but knowing that we'd have an easier time in a different location.

The beginning of November brought another infection, likely fungal, and not in the port. Over a week of fever, most of that spent in the ICU...and no Meatball allowed in the hospital at all. Super-fun, when you have to scramble to find help. Many people came through for us, but it was too tricky even so.

When the hospital told us that Meatball wasn't even allowed in the outpatient center, we decided to make the move for the kids and me the following week.

The new hospital here in Pittsburgh is truly excellent. Had I known about the type of treatment that we'd be getting here, I'd have wanted to move a long time ago just for that.

We were here for a week and then went in for The Boy to have chemo. The next week we learned that there was a "lesion" on his liver. On Monday, he will have it removed. It was supposed to be removed earlier, but The Boy had some sort of infection that, as per usual, came on VERY quickly. This was quite a frightening experience, as his temperature was ridiculously high, as was his heart rate. The doctors' notes described him as being in "septic shock" that night.

So now we go in for this surgery. While we feel very good about the care that he is receiving and the consideration that is being shown to our family...we're scared out of our minds.

The Year In Parents

Many bonus points to my father-in-law who stepped out of his comfort zone time and again this year in the interest of caring for The Boy. It was not an affront to his efforts that we had to leave. Looking at the bigger picture, it just made sense. Once he sees this new hospital, he'll be pleased with the care that The Boy is receiving.

Also quite a lot of credit to my father, being without my mother so much this year and still trying to keep things together in the house, which required a lot of repair as a result of a household incident. No, there isn't a great story behind it, so I won't bother.

My mother, however, has shown herself to be a world-class individual. Right from the beginning, she took on responsibility for The Boy and his care as if she were another parent. Did she have to do this? Certainly not. She was rewarded for her efforts by having The Boy love her that much as well.

Before Musical Daddy and I even realized it, my mother knew that we were in crisis, constantly. Despite our attempts to pretend that everything was fine and that bouts of normalcy were really what our lives were supposed to be like, my mother knew that the ordinary and "boring" things were actually rare treats. She provided help in such volumes before we even knew that we needed it.

Anyone who would question my mother's motives and would say that she has been anything but completely generous and compassionate...needs serious help. Really. Get your head examined if you think that my mother would go through as much as she has just for the sake of getting extra credit or monopolizing The Boy's time. I know that my mother isn't perfect. We didn't always have such a great relationship when I was younger. But now I not only have the benefit of her help but I also have an understanding of her efforts that most parents don't get from their kids when they are young.

My parents have now welcomed us into their home...and they come out ahead! They don't have to schlep out to help us, so they gain money and time.

The Year In Us.

Thankfully, Musical Daddy and I have each other. Once again, we give a lot of credit to my mother who spent so much time with us and with The Boy so that Musical Daddy and I could actually be in the same room as each other.

It's been a world class awful year. The only really good thing to happen to us has been Meatball. He is such a wonderful little guy. And even that, we struggled so much with him as a newborn. Everything else, while we've had our little victories, has been so colored with dismay.

2010...PLEASE be a better year.


Elana Kahn said...

I'm praying for a happier 2010 for you and your family.

Sarah R said...

Wow, when you put it all in one post like that, it seems so overwhelming!

I, too, am praying that 2010 is much better for you and your family.

JC said...

Praying that 2010 is a more enjoyable year for you all. You deserve it!!!

Heather said...

Molly I pray that this coming year is healthier and better for you all. Your truely deserve it after 2009.