Today was our much-anticipated consult with the pediatric surgeon. For those short on time, I'll not bury the lead: we still don't know a whole lot more specifics than before, but the news is generally good. Certainly, at the very least, it is better than what we were led to expect a couple of weeks ago.
To bring you up to speed, to this point we know there is a mass on/above/near/in the general vicinity of Lexi's spine. Her pediatrician called the radiology report from the ultrasound "concerning" and scared the bejesus out of us by adding that she might have cancer. The blood test showed "perfect counts", pretty much ruling out leukemia and lymphoma, but we still don't know what this thing is. We were told the next step would be a visit with the pediatric surgeon, but no one ever really clarified for us what, exactly, the surgeon would be doing.
It is not surprising, then, that today's appointment started with a lot of anger and frustration on our end. Our only instructions to this point have been to show up at the CHKD satellite office at 1 p.m. We've not been given a phone number to call to ask questions. We've not received a phone call telling us what will be happening. We have not even received a letter with pertinent information. We walked in the doors unsure of whether we were merely having a consult with the surgeon (whose name we wouldn't even know for another hour or two) or whether our daughter might be undergoing a biopsy or even surgery before the afternoon ended.
We were ominously directed to check in "upstairs" in the surgery department instead of in the main check-in area. This would be a good time for me to point out that in the process of trying to have kids, having kids, and repairing the significant internal damage done by said kids (reiterating note to self: those two will NOT be getting their security deposits back after the way they trashed the place) I underwent six surgeries in 4 1/2 years. Point being, I know a thing or two about surgery prep. So, as we head to the elevators, I start to worry that perhaps Lex should have been NPO (nothing to eat or drink) and since she has not been NPO, I start thinking that this may be a totally wasted visit. As it turns out, it was not a problem, but it gave me something to stew about while we waited a very long time for the surgeon to see us.
When the surgeon finally came in, it was a total 180 for us from our previous experiences. For starters, she was very calm and projected a general air of confidence and knowledge without the slightest hint of arrogance. The "God Complex" so commonly found in surgeons was nowhere to be found. Let me tell you how reassuring it is to a worried parent to feel like the person behind the wheel knows what the hell they are doing! Bedside manner-wise, she wasn't the greatest with Lexi. She wasn't mean or scary or anything, just not as kid-oriented as you might think a pediatric surgery specialist might be. But, A) most of the kids she deals with on a daily basis are anesthetized and don't care if she is Patch Adams or not and B) I'm not auditioning her to be a birthday party clown so I don't really care if she can pull a quarter out of my kid's ear as long as she can pull a mystery lump out of the kid's back!
At any rate, she came out of the gate with a totally different take on the radiologist's report. Instead of finding it "concerning" as Doogie did, she said the u/s pretty much confirmed to her that whatever it is, the lump is most likely benign (it helps that she personally knows and trusts the radiologist who read the scan). It also helps that the lump has gotten noticeably smaller over the past few days. In her words, "Horrible things don't get smaller. Horrible things get bigger." Finally, she was very pleased with how the thing feels when she manipulates it. Apparently, horrible things behave and feel differently than the thing on Lexi behaves and feels. I am loathe to admit that I find it rather skeevy to touch so I try not to touch it. But with a doctor for a brother-in-law and a retired nurse for a mother, I have come to understand over the years that medical people enjoy such human oddities...the squishier, the smellier, and the pussier, the better in their book.
The surgeon laid out three possibilities for what she thinks the lump could be, none of them overly scary or terrible. Her best guess is that it is a rebellious lymph node. Then she left it to us to decide what to do. Option A is to continue to monitor it over the next 3 to 6 months to see what it does. Option B is to have it surgically removed. She gave us pros and cons for each option and then said Lexi's case falls right in the middle: the risks involved with surgery are equal to the risks involved with waiting. Then she said the magic words that I needed to hear - words spoken NOT from surgeon to patient/parent but words from one mother to another: "If it were my kid, I'd probably wait at least three months and then reevaluate."
So that is what we have decided to do. While I don't like the idea of this "thing" inside my kid, I like the idea of putting my just-about-four year old through an unnecessary surgery even less. The decision was made easier when she added the caveat that if we find ourselves lying awake at night worrying, we can call at any time and schedule to have it removed. She says they frequently do such surgeries not because they are medically necessary but because it eases the minds of terrified parents.
She answered every question we had honestly and completely. As she was getting ready to leave the room, she asked both of us if we had any more questions or concerns. Then she told us, "My door is always open. Please call me if you have any questions or concerns between now and when we reevaluate in a few months." All of which left me wondering: Who is this woman and where do I find a pediatrician like her????
I'm not sure when I will consider this saga to be truly over. Part of me wonders if surgery would be the right move. At least then we would know for certain what is hiding under our daughter's skin and it would bring some closure. If it goes away on its own, I will be happy, but will probably always worry that it is just lurking, waiting to come back. But I keep coming back to the notion that it is not fair to put my child through surgery, no matter how minor, just to ease my own neuroses and insecurities. So for now, we will pray that we have made the right decision and pray that it continues to shrink away to nothing and never, ever comes back.
In the meantime, I'll start the process of searching for a new pediatrician. Looking at the situation with the veil of panic and terror finally lifted, it is clear that this has been poorly managed from the outset. Our trust has been breached and I don't think that can be repaired. There is no point continuing to see a doctor/practice if I will forever doubt anything and everything they say. So if anyone in our area has a practice or a doctor that they just love, let me know!
For now, hug your babies no matter how old those babies may be and thank God for every moment He gives you with them.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment