I have a page of hastily scribbled notes from the doctor's phone call yesterday. They are almost worthless, stating things like: "no bike or hammock", "brace-clam shell", and "surgery with gen surgeon." It was a gut wrenching phone call. I can't say our worst fears have been confirmed, because I can't even think about my worst fears. Though what I'm about to write may seem absolutely terrifying; I hung up the phone and thanked God for watching over my daughter.
The MRI showed that Salomae's infectious mass is only in front of her vertebrae (this is good news). Her spinal cord is draped over the mass, and her vertebrae are in a precarious position (very bad news). The doctor then informed me that most children under the age of 5 who have this are paraplegic. Since they are in developing countries, their parents don't get them medical help when the lump on their back shows up. Their bones deteriorate until one morning they can't move their legs, or perhaps they fall and injure themselves. When he said this, I stopped my note taking and sat their for half a second thinking about all of the bike accidents, sliding headfirst down the slide, flying off the hammock...and I almost wept because any of those things could have paralyzed Salomae. We are getting a brace for her back that will protect her from causing permanent injury to her spine. Until then, no physical kid activities because one fall at just the right angle would mean she spends the rest of her life in a wheelchair.
The doctor was hanging up with me to consult a general surgeon about our case. They had scheduled an appointment for us at 2:00 with this surgeon, "Can you make it?" Uh, yeah. I tried not to think about the madness that would ensue in order to leave the house in 45 minutes (I had gone for a run and was still sitting in my sweaty clothes, no lunch, baby on my lap having a bottle). Thankfully, I have a friend who is able (and willing) to watch my four children.
This surgeon will perform the biopsy that we need in order to successfully diagnose Salomae's infection. Most likely, it's tuberculosis. I know, freak out. We already did. Fast forward to our appointment at 2, which turned into 3:15...This doctor comes from the Big City only once a week. He expressed how lucky we are that there are two fantastic pediatric orthopedic surgeons at the hospital (who we already saw). Otherwise, we'd be traveling an hour or more to a children's hospital for these appointments. This doctor immediately put me at ease as he reminded me of the pastor who married Seth and I. He is a kind, straightforward doctor and explained things in a very clear way.
**Only read further if you want the nitty, gritty details**
We have three stages ahead of us. First, diagnosis (requiring a biopsy). Second, medication and then, surgeries to 'fix' her back. The biopsy is presenting him with a little difficulty. The mass is unapproachable from her back, so he will have to get it from her chest. He could try a needle, but perhaps won't get enough tissue for diagnosis. He could do it laproscopically, but same issue-not enough tissue. Perhaps even complications because of internal bleeding. Third option is to slice into her chest, pull back her ribs and access the stinky glob of infection from there. He said that would be the safest bet. Which seems weird to me. At any rate, he's trying to weigh everything to make sure we do what is best. She has a lot of major surgeries ahead of her, we'd like to have the least invasive procedure, maximize the amount of tissue for biopsy and culture, and keep her safe. He's consulting with a radiologist, pathologist, and the orthopedic surgeon. Then, he will call me today with a plan.
We should be visiting the brace-man today for measurements to order the back brace. I've been taking my older daughter there for 3 years for a prosthetic leg. Now the leg-man is the brace-man, too. I needed to talk to them about a new foot anyway, killing two birds with one stone is so nice.
I hope I don't sound lackadaisical about the dire situation that my daughter is in. The only thing I can do is thank God for his provision this far and pray that He continues to keep her safe. Beyond that, I don't know what to do except follow my notes that say, "no bike or hammock". Please pray that she stays safe and the doctors have wisdom in determining treatments and surgery.