Archive for September, 2011

Gastro Appointment

Monday, September 19th, 2011

We had our appt with the gastroenterologist and nutritionist late last week. The nutritionist was the one we had last time, the one who was judgemental and irritated the crap out of me (and Manolis). I specifically asked NOT to be seen by her again, requested the other one, and this one showed up. Manolis told me I offended her by saying I thought we were seeing Janet, I specifically made an appt with her. Tough shit! She offended me last time. She was a bit more subdued this time.

There wasn’t much to talk about, I updated them on what’d happened since the surgery, they could tell we were unhappy about our decision, but we’d decided we need to get a Gtube for Maria. The doc explained the 2 types of surgery: the easy way requires an upper GI where swallowing barium is required (NG tubed barium is ok), so they can be sure Maria’s stomach is on the right (for some kids it’s on the left). So this would be 2 more appts before the surgery–1 for the upper GI and 1 to see the surgeon. The hard way is done by laparoscopy, so the surgery is a bit more involved and no barium swallowing is necessary. A separate visit to meet the surgeon is required regardless. Our appt is Wednesday. He’ll make a recommendation on which type he thinks would be best. I already know it’s going to be the complicated one. I’m going to ask (demand?) that Maria get 2 IVs placed so if one fails, she’ll have another one available. We can’t go through what we did last time.

I asked if we needed to wait until she’s less compromised and he said no, that’s why we’re doing this. I wish I’d remembered at that moment that the reason we waited so long to see him is because HIS girl who answered the phone said we had to wait. I said I wanted to get it over with and she said we should wait a month or so. I’m sure he would like to know what the person answering the phones is saying…

Maria stayed home Friday because she had a fever Thurs eve and Friday. She was off Thursday morning, seemed very sad. We thought it might be because we were going to see the GI doc that afternoon, but maybe it was because she was already starting to feel crappy. She seems much better now. Maybe because she had a Shin Jin Jyutsu treatment Saturday?

We went to Sedona today for me to meet with a medical intuitive who gave me some interesting theories about my health. She’s one of the few in the world who’s trained to read the iris and sclera (whites of the eye) to determine your health and what to do about it. It was well worth the $ I paid — esp if it will cause me to keep my uterus and/or avoid another surgery. We’ll see… (oh yea and/or get rid of my pain)

Broken leg: a week later

Monday, September 12th, 2011

We are all still pretty much in shock about the broken leg thing. It almost certainly occurred over the weekend, when Cathy and Manolis had her. That’s just as well. If it had happened at school, or even when Sue or I were taking care of her, it would be harder to get past. Nobody did anything wrong, but we all feel guilty anyhow.

In addition to the extra 3-4 weeks in a cast, there is the long-term “one more damn thing to worry about” aspect. This is not uncommon in kids with CP. They tend to be malnourished due to feeding problems, and often don’t walk so don’t bear weight. These lead to brittle bones and ongoing osteoporosis-type problems. Yippee.

Maria continues to refuse to drink much. She eats OK–not great, but OK–but doesn’t drink more than a few ounces a day. Cathy has to tube her every night and get two cans of stuff (Nutren, PediaSure, whatever) down her, and then Maria pulls the tube out by morning. Cathy tried three cans one night, spread over more than three hours, but Maria threw up. It’s not just the volume. This stuff is super-rich, high-calorie liquid and the body just can’t tolerate a lot at once.

Maria goes to the GI on Thursday and it’s pretty much certain she’s headed for a g-tube. That will make it easier for us to get liquids into her over the day rather than all at once. We’ll still feed her normally and work on getting her to drink, but the tube will be there as a backup.

Fractured Distal Femur

Tuesday, September 6th, 2011

For the past couple days, Maria has been gasping a lot whenever we move her. Her left hip seems very tender. She usually does better in school than at home, so I sent her to school with a cautionary note that she’s been extra tender so take extra care. 2 hours into school, the nurse called and said she thinks Maria needs to be seen by the doctor today. I’d already called the orthopedic surgeon at 8am, so I called them again and said we need to come in today.

When we got to the doc’s office, he sent us in for xrays. They took many films of her left leg, top to bottom. Then a few short moments later, the doc came in and told us Maria had a fractured distal femur. I said, “she has a broken leg?!” Yes. Our daughter has a broken leg (thigh bone near the knee). Her bones are porous, like from osteoporosis. He said it’s not uncommon to have fractures like that in kiddos that don’t weight-bear much. OMG! And, he said if it happens again (AGAIN?! really?!), then he’ll prescribe Fosamax for her.

They put what they call a splint on her. Looks to me like a soft cast. It goes from her toes to her upper thighs. She has to have it on for 3-4 weeks, and he recommended using the giant wheelchair again. It’s almost like going back to post-surgery.

This was the straw that broke the camel’s back, I’d say. This was too much for me. All the other stuff that’s happened to/with Maria has been out of our control, but this? This was caused by one of us. Something we did–not on purpose, of course, but still, something we did to her. I can’t hardly bear the thought. The doc was trying to blame it on school, but it happened over the weekend, I’m sure. When I called the physical therapist to cancel, she said something to the effect of, “I didn’t do it.” I quietly balled through most of the rest of the appointment, sniffling while holding Maria’s leg while it was getting wrapped, and all the way home. Manolis suffers in silence, I usually talk my way through things. This time I didn’t talk that much, but I think my crying upset Manolis in addition to the leg. I know both of us are wondering, what did I do? It may have been trying to get her damned new AFOs into the shoes they sold us that are too small, it may have been accidentally moving her wrong, who knows? When we got home, I drank 2 shots of tequila, which really helped take the edge off. I gave Maria pain medicine and valium, then shoved a tube up her nose to feed her because she’s not been drinking/eating well, so she fell asleep. too much…