Tuesday, January 8, 2008

Reality check

This is the spice rack in my kitchen, and no those aren't spices. These are Pipo's medications. He doesn't take all of them at once, and when he is in remission he doesn't need any of them. Fitz has suggested more than once that I put them away... just leave out what I need, keep them in a cabinet etc. Each time I have said no... I have a system. But really I need them all there. I need them to be out in the open. I don't want Pipo's disease to be something hidden away. It's the reality in our lives, part of our every day. It's also a good reminder to me to have them all there. A reminder that the disease is still there, even on the good days. A reminder that I can't let my guard down... I need to be on top of things to take care of my son.

Though I haven't talked about it, Pipo went into relapse just before Christmas. He's been back on the full dose of Prednisone and he is visibly puffy. Thankfully it's kicked in, his body is responding, and we'll be able to taper it off now. The down side of that is that now we get to start a new drug. Another immunosuppressant that he hasn't been on yet. Another whole round of new side effects. I look at that spice rack and the reality if all those chemicals in such a little body hits me.

Recently, an acquaintance asked about Pipo's health. I mentioned the relapse and the new meds we would be using. This person immediately asked if I had looked into homeopathic or holistic approaches. I smiled politely and nodded and quickly changed the subject. Inside I was seething. It's not that I am opposed to either of these methods... it's more that this person didn't have a clue about our reality. She feels 'so much better after taking this or that'. Her 'knees don't ache anymore' or 'she just has so much more energy'.

I don't put all these drugs into my son without thinking about it. I spend hours researching drugs that have been prescribed for him. But the reality is these drugs are not 'making him feel better'. These drugs are keeping him alive. FSGS does not have a cure at this time. It eventually leads to renal failure. These drugs are keeping his kidneys functioning, and helping us put off that eventuality. Hopefully we can put it off until there is a cure found. This is the reality we live with.


Becky said...

Oh I so feel your pain. We have been giving miles of unsolicited advice on our son's seizure disorder. I'm glad your guy is doing better and we'll keep him in our prayers.

Renee said...

You are a GREAT MOM!!!

Kudos to you for doing what is right for your son.

Praying for Pipo!

Mayhem said...

Impressive med collection! Yikes!

I remember that Pipo was sick when he got home, but I did not realize he had kidney disease. I'm glad he's doing more or less okay, and sorry about the relapse. That must be really, really hard.

patjrsmom said...

Oh my goodness, Denise. I am so sorry. Sorry that Pipo is back on the other meds and sorry for the ignorance that exists out there. Once again, you have illustrated the incredible grace that God gives us in bringing adoptive parents together with their children.

You'll be in my prayers.