Sunday, September 27, 2009

On the eve of if....

Lots of uncertainty and anxiety tonight. I should be working on some math homework, but I can't really concentrate on anything outside of what is potentially going down tomorrow. Robby is scheduled for out patient surgery in the morning for something unrelated to his JRA. He was born with a vascular malformation, a blood vessel tumor if you will, on his left hip. The medical stuff all started for him very early with blood draws and ultrasounds trying to determine exactly what this thing was. The possibilities ranged from the harmless to the horrifying. In the end, the pediatric dermatologist decided it was probably a rapidly involuting congenital hemangioma (RICH) and we decided to just monitor it to see what it would do. The picture here is from around July 2007 when Robby was 3 months old. You can see the RICH pretty well. The white looking area was a spot that would ulcerate and bleed. For the entire first year of his life I had to keep the area covered with dressings with Aquaphor on them which had to be changed two to three times a day. I also had to be very careful with the area because the slightest bump or scratch would cause it to bleed like crazy.
After he turned one, the RICH had involuted (shrunk) a good bit and had pretty normal looking skin over it, so it didn't required the dressings anymore. The dermatologist was happy with how it looked and said, unless any problems developed, we could just come back when he was two years old for follow up. In January the illness that eventually led to our JRA diagnosis started up. April was Robby's second birthday and I went into the dermatology appointment thinking it would be no big deal. I was rather surprised when the dermatologist started frowning while she was examining him. She told me, "I no longer feel like this is a RICH." She explained to me that some of the characteristics no longer indicated a RICH. There were still a couple of different things it could be but she wanted to do an ultrasound to get a look at what was going on under the surface. We had the ultrasound and I was relieved to see that the tumor was a lot smaller beneath the surface than what it was when we had our original ultrasounds in 2007. It also seemed to have a lot less blood flow going to it than it had originally. Dr. W. gave me two options: have a punch biopsy done or have the tumor removed. She explained he would be awake for the biopsy and they would cut a section off and give him a couple of stitches. After all of the labs and things we'd experienced over the previous months, I knew there was no way he was going to be able to be still enough to go through that procedure. I also had concerns with how any future "big gun" drugs we might have to give for the JRA would interact with this now unknown tumor. I opted for surgery which is scheduled for tomorrow morning.
Fast forward five months and here we are. I am still convinced that surgery is the right thing to do. We have already moved onto biologics (Kineret) for the JRA and I don't know what is yet to come. There is a slight wrinkle though. Wednesday we saw Dr. H (rheumatologist) and had Robby's regular labs drawn. She called me Thursday night to tell me his hemoglobin was down to 9.5 (under 10 is considered anemic) and his SED rate was up to 52--the highest it's been the whole time we've been monitoring it. Leaving aside my frustration that he's seeing his worst JRA labs ever after I've been inject him with daily medication for four weeks now, this meant the surgery now had a big question mark on it. Was he too anemic to safely go through with the procedure? Dr. H. wanted to talk to the surgeon. We discussed whether or not we should just wait. She didn't want to because she's thinking he is going to need a round of Prednisone to reign in the flare and give the Kineret a chance to work and she doesn't want to give him steroids until we can figure out what this thing on his hip is. She told me the thing I knew in the back of my head but didn't want to say out loud, "We have to consider the possibility that it's turned malignant and we don't know it. Steroids would just make it grow faster."
I spent most of Friday trying to get answers out of the folks at the surgeon's office. He finally called me back today and told me he is comfortable but it will ultimately be up to the anesthesiologist on duty and whether or not they feel he will be safe. I explained to him why I want to go through with it if everyone is in agreement and he felt we were doing the right thing. We are supposed to show up tomorrow morning but I don't know if we will actually get to have the surgery or not. If they won't do it, then I think I will push through with the punch biopsy so Dr. H. can get the answers she needs to make the call on starting Prednisone.
What decisions these are! It seems I am constantly called upon to make decisions so much bigger than me that they can almost overwhelm. If anyone would have told me a year ago that I would be chosing which major medication to treat my toddler son with, or deciding whether he was healthy enough to try to push through with a surgery--I would have thought they were crazy. When I first started dealing with this illness, there was a lot of "How do I know I'm doing the right thing?" I agonized over it almost to the point that I couldn't make a decision at all. Since then I've made a little peace as I've realized all I can do is try to learn as much as I can, surround us with the best doctors possible, always keep Robby's best interest in mind, and pray for the wisdom and discernment to make the best choice possible. That has taken me a long way so far, but I have to admit I am really scared about tomorrow. What if something happens? What if he ends up needing a blood transfusion and it makes him sick? What if the unspeakable happens? Will it be my fault? These are the things that race through my head as I wait for tomorrow.
We took Robby for a walk earlier today and I had a bit of a Yolanda Adams song stuck in my head and it was a bit comforting to me:

I don't have the right to give up /I don't have the right to give in/You're gonna bring me through/I'm gonna put my trust in you
And that's all I can do. I pray that God will keep my baby boy in His hands tomorrow. I pray for wisdom for the doctors and nurses who will care for him. I pray that this tumor is benign and harmless. And I pray that we can move on and find an answer for ending this JRA flare. My little guy is looking rather sickly and tired lately. I would love to find him some relief.

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