Sunday evening, our son got sick again. I could tell all day that he wasn't himself. I kept asking if he was ok, and he kept saying that he was. But a momma knows. We were scheduled for his immunolgy-panel results on Monday morning. I thought that he should go to school - that the dr. would be talking over him to us about the news. My husband thought he'd earned the right to be there. My husband was right. They ended up doing MORE tests and an exam - how very cooperative of our son to be sick on the day of this appointment.
At the visit, we were told that he has a B-lymphocyte deficiency (a kind of blood cell) as well as an IgG1 and IgG2 antibody deficiency. Combined, this means that his body does not make the proper immune responses to certain bacteria, especially strep (the kind of infection we suspect always invades his sinuses and lungs – but we’ve never done a biopsy during an infection because it is a surgical procedure). But normal levels are 400-1600 and Cale’s are around 160. This means that his body needs to receive supplements of these cells/antibodies – in the form of infusion once a month.
This infusion, which will be kind of like a cocktail made up of very specific antibodies and such, will be given to him once a month at our house, by a home-health nurse. For the first month or two, they will run a pic-line, but if that proves to be too traumatic for him or they have to poke him multiple times, they will surgically implant a port-cath, like what my dad has for his chemo, in his chest. They said it’ll take about 2 hours for the full infusion once the line is started. The nurse will stay the whole time, and she is pretty cool – she will watch tv with him, read with him, anything he wants. Adam or I will be there too, of course.
He’s also going to start a sulpha-class antibiotic that he will stay on indefinitely (he's now resistant to the cephalosporin class drugs) – going off only for a week at a time when we feel his symptoms are stable, so that he can have a rest from the routine. The infusion will also have a steroid, fever-reducer and antihistamine in it to ward off the possible yucky side effects.
They blood tests they ran yesterday were to check his allergies to certain foods and drugs – because he’s having more vomiting spells, and the dr. feels this could be triggered by something or is related to his condition rather than being “just reflux.” He’s had skin testing before and they wanted to repeat them, but he can’t go off his Xyzal (a medication he takes) or he has hives, so they couldn’t do the skin tests.
So, there is a lot to absorb. We still have a lot to do to figure out the financial side of all this, in addition to the schedule, etc. There are some possible side effects, so we’re trying to schedule it for a Friday afternoon or Saturday morning, so he has the weekend to rest. We’re planning to start them in November, once insurance approves it (don’t get me started on THAT).
It’s good to know what’s going on. It’s hard to know what he has to go through. It's a lot for a seven year old to wrap his brain around. But he’s a trooper and takes everything with such a good attitude. So it’ll all be ok.
That's the "textbook" version of it. My dearest friend asked me today, "How are YOU doing with all of this?" What a loaded question. I'm scared. When a doctor starts talking about surgically implanting a device in my son't chest so they have direct access to infuse him with plasma and antibodies that they mix in a lab, well that's terrifying. When I think about IV bags being hung in my front room, I get an ache in my stomach. This friend's son, who is the same age, cries at the mention of a blood-draw, needle or xray. Our son just shrugs his shoulders and plays along. He sees the poke marks and bruises as battle scars that he is proud of. That makes me cry - because it makes me sad and proud all at the same time.
The cost of it - financially and emotionally - terrifies me. How are we going to continue providing for our family, give them Christmas presents and also pay for these treatments - the cost (even WITH insurance is just overwhelming). How do we make this "normal" for him? There's nothing "normal" about it at all. What will he remember when he's older and looks back on this?
But more than any of that, my heart aches when I look at my son, knowing this his "normal" is to just feel crappy. He's so wonderfully sweet, endearing, smart and the love I have for him cannot be put into words. I remember the moment I first saw him, hooked to wires and machines, and thinking how amazing he was at just hours old, overcoming the odds. And seven years later, he's still overcoming. He has a piece of my heart that I just can't explain. And knowing what he's about to take on - ugh, it hurts.
But the idea that he might soon feel good and experience what it's like to not be sick....what it's like to go months without a hospital visit, doing things that other kids do without worrying it'll make him feel bad - that in itself is so worth all of this panic and worry. I picture a child who, when I say, "How are you today?" he'll say, "GREAT!" and mean it. Isn't that a wonderful picture? His day is coming. I can feel it.
No comments:
Post a Comment