June 30, 2008
Delightful. As nasty as that sounds, it's good news. We can hope that over the next few months some of the TB bacteria will grow so that we can be sure it isn't the strain that's resistant to medication. The hematologist called me Friday to let me know that the bone marrow came back fine. As far as she's concerned, Salomae is as healthy as can be (not even anemic!).
We started medication on Friday. The nurse came over as the kids were waking up and Seth was getting home. She made a big display of helping me to dispense the medications. It's not that difficult. Four suspensions, four gulps by the little girl, four times Mommy counts and coerces. With the nurse present, she called the pharmacy to make sure we were doing the right doses, all the kids came streaming out into the living room to watch, Seth had to pepper the nurse with questions (mostly related to whether she was required to be there), and the whole thing just seemed more complicated. We left town that afternoon and I've managed to give her the medicine (on vacation) without fanfare for three days now. She's getting smart about it and yesterday I had to give her a swallow of coke to help her get them down.
Thank you for all of your emails and comments before the procedure and since then. Sorry I've been so late in posting about the day.
June 23, 2008
The after effects of the genius lunge-swing-fly noodle move. "I think my arm muscle got broke."
Once the drama dies down, I notice that the sweet silent baby is quiet because 1-he's mesmerized by the action and 2-he's snacking on clover. This is his, "Don't think about telling ME not to eat grass" look. He's 75 stuck in an 8 month old body. The sheer torture.
It's a perfect end to a very. Long. Day.
Now nine years later with five children and insurance, but still just as irresponsible as ever. We are obviously in dire need of a family portrait!
June 19, 2008
I finished that last sentence and my cell phone rang. It was our infectious disease specialist (from here on out she will be known as IDS, to ease the burden on my fingers). She met the surgeon today and he told her that he wasn't going to do the surgery. He felt it was too dangerous. So we are going to have a procedure done Tuesday to try and get some fluid from her lungs. Perhaps there will be a bit'o'bacteria that can be cultured.
I can't believe that I started this post four days ago (today is June 23).
The scoop as of this very moment (subject to change)...Salomae is having a bone biopsy done on Thursday (since the lung juice was probably not going to work out so well). Hopefully, Friday she will start medications for TB. We saw a pediatric hematologist this morning who is concerned and wants to get some bone marrow from Salomae on Thursday while she's knocked out.
I'm going to post this right now before things change again!
June 15, 2008
The kids today after church today.
June 13, 2008
Our week by the numbers:
7- Doctor's appointments this week.
6- Doctor's appointments (out of 7) with all five children in tow.
6- Times I've been told by nurses that my kids are very well behaved and get along so well.
20- Pounds that Josiah weighed at his well baby check-up.
1- Shot that the doc convinced me to give him today.
2- Times we were caught going into doctor's offices during a downpour.
4- Times I've been asked if I run a daycare (just this week).
10- Minutes I was stuck outside of the Sunoco restroom with 5 children as I spoke to the beer delivery man about me not running a daycare. Then about which kids were mine. Then about where they came from. Then about whether I was married and if my husband had a really good job. Then about Sally's hair and who would do it later, because "she's probably going to need treatments." Evidently, this particular beer man also runs a salon downtown.
4- Times that my "limp home mode" light came on in my van.
6,000- Miles it's been since I last had my oil changed. Whoops.
4- Hours it took to get my oil changed today. We left the van after I heard the wait time.
3- Blocks from the oil changing guy to our house.
21- Pounds of strawberries we picked with our friends on Wednesday.
9- Pounds of strawberries we brought home. Salomae and I cut and washed all 9 pounds last night.
266-My initial tab at the grocery store Wednesday; it was a record setter. After coupons I spent merely $250.
1.60- My savings per gallon the next time I fill Moby up because of the expensive grocery bill.
3- Visits to the Orthodics office for him to get Salomae's brace 'just right'.
1- Little yellow-Dumbo-covered back brace that now sits in the girl's bedroom alongside a prosthetic leg.
2.52- My total today at the "Old Tyme Candy Shoppe" after allowing each kid to pick out 10 pieces of candy from the bins. Does it seem quaint because two words are misspelled? It was the hot pink exterior and the sign saying "2 cent candy" that drew me in. And the fact that we would be walking past the Longhorn Saloon on our way there. I just adore the smell of urine on a hot, muggy day. Life lessons abound during weeks like this.
30- Minutes in the candy store. Average time spent picking out each individual piece of candy= 3 minutes. That's a long time to hold a 20 pound wiggling baby in small aisles with colorful jars stacked on rickety shelves.
5- Mornings I have managed to get up before everyone else and be alone with God. He's the only reason I made it through the past five days without injuring someone.
June 10, 2008
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.
June 9, 2008
Instead of the long story of my day--I'll give you this poignant post from Mary, her sister is currently volunteering at a hospital in Ethiopia. I couldn't help but imagine MY baby as the one she wrote about.
June 7, 2008
As long as they blog. I'll amend that--as long as they blog better than I did while WE were there and don't blow up any cameras or lose memory cards.
Visit the Kidds, Cordells, Gardners, and Wests! Pray for them as you read about their week.
June 4, 2008
While we were in Ethiopia, I kept having these 'I wish the kids were here' moments. I wanted to transport our experience home with us. So I asked the cameraman (lovingly dubbed Seth) to record everything we did. He was pretty annoyed.
Riding around town was an experience that my kids would have loved. I would have been a ball of nerves...no carseats, seatbelts, or even traffic lanes. I kept harping on Seth to "RECORD this!" When I was at the hospital yesterday, I put this together while I waited (3 long hours) for Fetya's MRI to be done. The kids got a kick out of it and I thought I'd share it with you.