Patient 2 (Tanner) is still in the midst of her cyclic vomiting. She's only vomited three times today though so that's a good thing. And she's staying somewhat hydrated. We are dosing Zofran every four hours and 3 TBSP of liquid Benedryl every five hours. Her head isn't hurting like it was...so she's only needed one dose of the Imitrex nose spray. So 24 hours into the cycle, we seem to be able to maintain at home and that's a good thing.
I called our Little Rock Dr this morning to touch base with her. We still don't have the results of the genetic testing that we did last month, so I wanted to check the status of that, plus I just wanted to chat with the Dr. Speaking of our Dr....I have to say that I'm amazed by our Care Team at Arkansas Children's. We see a Physician's Assistant, Jessica Carnation, but she is just wonderful. She is always researching new ways to help Tanner. She will typically call me back the same day I call her or she will ask her Nurse to call and let me know that she's in Clinic and will call me the next day. She has told me several times that all the GI Dr's know about Tanner's case and they are all collectively working to try and "improve Tanner's quality of life." When we were inpatient at ACH last month, we saw several Interns and then the Attending GI Dr as well. They too were all very good and truly made the experience as good as it could be. I'm so very thankful that we have come in contact with such good Dr's. A definite answer to prayers.
Now on to Patient 1 (Steve). We went this afternoon and saw the Neuro Physician Assistant that we've been seeing. We met with him to go over the results of the pain shot that Steve got last week. After talking to him at length, he went and spoke with Dr. Knox, the actual Surgeon. Long story short-the Dr who did the first fusion back in 2008, didn't do what he told us he did. In other words, what he told us, verses what his Operative report says are two different things. He didn't fix the problem. He basically put a small Band-Aid on it, though he told us that he totally fixed it. So what does that mean to us?
It means we are looking at another surgery. We go back to see Dr. Knox next Monday to discuss specifics. What we know now: He will go through the front this time instead of the back. He will take the damaged disc out, put a mixture of cadaver and synthetic bone in where the disc was, stabilize it with four screws then probably take out the old hardware. They won't decide that until they get in there. Basically, the disc isn't stabilized, therefore it moves and is irritated. That's what's causing the pain. So packing that area with bone (which should have been done the first time and wasn't) and inserting more screws will stabilize that area.
They will keep him at least overnight, if not two nights. He will wear a brace for at least four weeks. He'll rehab before and after the surgery.
When we were waiting to get next week's appointment scheduled, Dr Knox came out of a patient's room and came to us, extending his hand saying "Are you the patient I've been studying and talking to Dr Valentine about?" He was so genuinely nice. He stood there and talked to us for probably ten minutes (sure hated that for the patient in the room though!) and just reassured us that he's confident he can help us. He of course can't promise the pain will go away 100%, but he does feel very good about the surgery. He told us to go home, think of questions and he couldn't wait to sit down and talk in detail with us.
Remember what I said above about Tanner's care team? Well I feel like God has blessed us with a great one for Steve as well. I just have a weird peace about this. I love how we can sit and talk to the Physician's Assistant....how he takes his time (usually at least an hour) in answering things and that he's not afraid to say he doesn't know the answer to something. I love that we can joke and laugh and yet be serious as well. I love that he's confident when he's talking to us and that he's honest. He looks you in the eye when he speaks to you-that's a big thing to us. I love that when I apologized today for Steve and I being goofy, the Dr laughed and said "It's ok. That's how we roll around here. You fit right in." Again, a huge answer to prayer.
So that's where we stand today. I was just not in a good mood today. I was edgy, tired and just plain irritated with people in general. Could of been because the first guy I dealt with this morning was grumpy. Could have been because certain people make my child feel bad when they are sick. Could have been because I've not had a full nights sleep in weeks due to night sweats. Could be the fact that I'm trying to take care of two people by myself. Could have been everything combined. :)
The day is over though. I've got both patients in bed. Steve ate. Tanner is medicated and resting. I'm kicked back watching The Bachelorette and eating a homemade lime coconut ice cream sandwich. For this moment, life is good. And for that, I'm thankful.
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