Thursday, November 17, 2005

RSV Vaccine

The cardiologist said that he thought that the synergis was a good idea and he would submit his approval. That is he did, but then he opened Jack's file and remembered that Jack was not a premie. Apparently, Jack doesn't fit into the requirements for Synergis (the RSV vaccine) because he was not premature and he doesn't have something like congestive heart failure. Actually, his heart has not had any problems since he's been out of the NICU. Being on the heart meds is not enough. And he's never had respiratory issues. So we're back to where we were.

I've tried to find out the cost, and as far as I can tell it would be $1300-1500 if he was a premie, possibly more since he's not, just for one month's protection against RSV. That's all I need really.

To the insurance company I want to say this...

We can decide right now that our son should be put on the surgery schedule for December. He would be admitted in December and have the surgery and spend a week in the hospital. During that week it is more likely than not that he will get RSV. When he does, without the vaccine, he will get very sick and he is already sick enough. The extra care required will cost far more than $1500. So really what I'm proposing is hedging the cost of the surgery. A financial deal with and extra benefit of additional customer satisfaction.

But, that's not how it works. They will want to save the $1500 by having me postpone the surgery. By postponing it, I will also be going into the new year which means new deductibles. So, while right now I've maxed out our out-of-pockets, next year they will start over and I will have to start paying all over again.

There is no common sense applied to this. They will have him wait to save the vaccine cost. They will have him wait so they can collect new patient deductibles from me. And the cost to this is not just my sanity, but they are risking whether something will happen with this stoma and he could end up getting the surgery anyway but on an emergency basis. That has to be more expensive than a planned surgery, plus he will then get the RSV from being in the emergency room and not getting the vaccine.

One track mind.

My inlaws are coming over tomorrow. I've got to get the house clean. Then I've got a school project I've got to get done because we're meeting with the client tomorrow. It's a financial project for a start-up. It's not too bad, except for the typical white male business student with attitude on my project. All his ideas are good and all of mine are bad. If this were the Apprentice, at this moment I would be doing my sidebar with the camera. Then I'd work to get him fired. But, since this is school and my grade is partially dependent on him, I'll try to make it work.

Wednesday, November 16, 2005

Sorry I've been MIA

Time... I just don't seem to have any.

I'm so sorry I've left you all hanging. First there was Katrina, and then the semester restarted, and work got crazy crazy. Here it is, midnight, and I've still got tons of things to do before I sleep. Part of this may have to be typed one-handed in case my little wonder needs a drink.

Next to me is Jack. My little love. He sees his cardiologist tomorrow and I will be asking him for help. Back in July the surgeon said that we'd set a November surgery date (to take out his colostomy and bad intestine and hook his good intestine up to his butt to poop like a regular baby). Then we saw him in October and he told us that we needed to wait until January, maybe February, whenever RSV season is over. Of course we could do it now, but Jack will most likely get RSV while in the hospital post-surgery and end up on a ventilator. Our choice. Gee, let me think about it. So, I had saved everything I had to get to that October appointment, planning on a November surgery date to get our lives back to some sort of normal. And now they're saying January, February if we're lucky, maybe not until March!

Meanwhile, lately his stoma has been prolapsing, which means sometimes sticking out as far as 3 inches. Hold you fingers that far apart and imagine your baby's intestine sticking out that far inside out and you'll know why I've been a mess lately. Again, I was fine. Lasting to November, taking care of his colostomy and heart meds. But then when I think I've got it together, it prolapses, and nothing could look so wrong. I've asked several times different doctors and nurses and "as long as it's red and puffy it's fine, but go straight to the emergency room if it turns blue or black." Oh, I'd do that for sure.

After talking to the pediatrician, my plan is as such. We're going to try to get Jack approved for the RSV vaccine because of his heart. Then we can get him his surgery without so much danger from RSV. So tomorrow I need to make the pitch when we see the cardiologist. Cross your fingers and all that.

The thing is, I'm not sure I'm making the right decision. It's all about me and for me, or at least it feels like it. Besides screaming through the bag changes, or trying to rip the bag off whenever getting his diaper changed (and lately through his clothes), Jack doesn't care about any of it. He doesn't seem to notice at all. Once he gets his plumbing fixed, he will get severe diaper rash as all such babies do. His poop is still completely liquid, which is not right. Life is not going to get easier once the surgery is done. I want so bad for everything to just be right, but really it won't be. Sure, I won't have to see my son's colon anymore and he'll be able to wear pants, but at what cost?

My pediatrician talks so confidantly about how to care for Jack and so on. I love him. Did I mention that he looks like Daffney's lawyer ex-fiance on Frasier? Sorry, obscure reference. Anyway, I asked him if he'd had another patient with Hirschsprung's before. "Oh yes." Really. How many? He thought awhile, then answered, "One." In his whole career.

So I asked the pediatric surgeon, "Do you do these surgeries a lot?" "Yes. A lot." "So, what is a lot? Daily? Weekly?" "About 2-3 a year." Great.

Gotta love those obscure birth defects.

So I'd ask someone else what I should do and how they survived, but I don't know anyone else who has dealt with this. I'd want to know how bad the diaper rash is. Or if the poop got solid. Or if the prolapsing bothered them. And how they kept it all together.

Jack had a developmental assessment and loved it. The doctors played with him and he showed off, scoring normal or above normal on everything except speech. He's a man of few words. I think the concern was whether he would be at where he should be because of his time in the NICU and whether he was getting enough tummy time. Yep. He can roll easily back and forth, and does a sort of rolling action to get to what he wants. He can sit for awhile and loves to stand. He did great with the different toys, and seems to prefer his left hand, although it's still pretty early for that to be set. He doesn't need to go back for another 6 months, so he must have impressed that he's doing well despite all.

As for looks, he looks just like his father, same smile, same face, same head, same shaped eyes. Jack is growing faint brown hair like mine, with none of Matt's curl. And his eyes are a medium blue - a color all his own since Matt's are brown, mine are hazel, and Janie's are light blue. As for build, he's very lanky. My long green bean. I think he's on the 25th %-tile for weight and 90+ %-tile for height. It's that whole digestion thing. And he's not that fond of food. Unless you're talking about late night breast feeding, in which case he's totally on board. During the night he feeds almost hourly still. Really. At 7 months. I don't get solid sleep and haven't since he was born. This is where he takes advantage of me, and I let him. I suppose I can not feed him, but they are good feedings and he's kind of skinny so I do it. He doesn't breast feed so much during the day. He eats, but not a huge amount. He's just not that much into it. I have to really sell it to him.

And he still sleeps with me, although you could have guessed that from the feeding part. During the day he naps in his crib. Janie was in her crib for nights by 3 months. Different kids, different needs. Or is it that I'm just softer as I've gotten older and he's got me curled around his finger?

Meanwhile, Janie turned 5. We had a great party with my mother showing up as the evil queen from Snow White, my sister as Snow White, my other sister as Cinderella, and her boyfriend as Prince Charming. My cousin overheard some mothers sniping behind my back about how I'd hired all these characters. Nope, we're related. But I'll take that as a complement, since I would have been just as snarky.

So much to catch up on...
... Still haven't written thank you cards for all of the baby gifts. oh my god.
... Have a cavity and no way to get to the dentist. Jack would never sit through it. And I use my husband's aunt to watch him for my classes. And the dentist is closed in the evenings, on the weekends, and Fridays. Bah! Goes with my spa gift certificate I got at my shower that I haven't had time to use. It expires at a year, and that will be here soon enough.
... Mammogram has been put off until 2 months after I'm done breastfeeding. Tech asked if I'd be done soon. Not sure. Probably done whenever he wants to be done or he grows teeth. It's that pesky lumpectomy thing I had 2 years ago January.
... Saw nephrologist again who found some sort of strange protein things going on in my urine. She wants to test me for lupus but is putting it off until after Jack's surgery, because I have enough to deal with already. So I just try not to think about it. Um, okay.
... Lost 55 lbs so far since day before his birth. 30 was pretty easy, as it consisted of my 9 lb 5 oz baby and his ecoutrements. The other 25 has been weight watchers and breast feeding (and not sleeping much).
... Had first phone interview for job and found out that working from home can be considered by others as same as not working. Plus she asked if I had kids and their ages because of the ability to relocate (or ask illegal interview questions). When I said I have a 7 month old I got the old "Ooohhh." and not in a good way. Wonder if I should submit proof of my tubal ligation? And if they think a baby at home will make me less of a candidate, good thing his health didn't come up. I didn't need any more strikes.

It's almost 1 and I'm starting to run down. I feel bad that I was away for so long and that you worried. I'm okay and Jack's okay. We're all okay. I complain a lot to you, but that's because I don't with anyone else. I don't want anyone else to know. I want them to like him for who he is. I don't want him to see any sad faces. So I don't say and no one knows. Except you. You know all and love him still. Guess that blows my whole theory.

Thank you.