Maria Rose

This morning we had a follow-up with a pediatrician (not her regular one, but one who has seen her before). He said although she sounds junky, it’s probably mostly in her upper airway and would benefit from suction. yuck. He tried to get her oxygen level, which was difficult as usual because she moves a lot. Then he put a sensor on her foot, taped it on, and less than 1 minute later, he had a reading of 99. Why has nobody else ever done that? OMG!

He saw the report from the ER and said to me, “no offense to the ER docs, but I defer to the radiologist. He found no pneumonia, so I don’t think she has it, or if she does, it’s a mild case.” I thanked him profusely, said that’s what I thought, and told him how much I appreciate him not overreacting, as so many medical professionals are prone to when it comes to sweet Maria.

She’s doing pretty well today. Ate fairly well, isn’t interested in sleeping, so I put her in the walker and she’s at the table trying to pull papers off. Yea Maria!! Love it when she gets in trouble like that.

Today was the last day of Kindergarten and Maria had to stay home. I did take her to school for a few minutes to give gift cards to some of our favorites and to pick up all her stuff (she had a lot of stuff!). The saddest thing I heard is that Nurse Gina isn’t going to be there next year. A nurse from another school is. We really like Gina. She’s going back to school to be an RN. Sure hope we like the next one!

We did get to see Elisa, one of Maria’s paraprofessionals. We really hope she’s with Maria again next year. She’s great with her. We saw 1 of her 3 teachers, missed the bus driver. Made it a quick trip because we needed to rush home to eat and have another breathing treatment.

Maria’s doing much better today. Both her nurse and her ex-nurse special ed teacher told me they were worried about her yesterday. She ate pretty well. Drank so-so. Good mood. Still breathing crappy.

We went to the neurologist this afternoon. He was very concerned about the aspiration pneumonia and talked about a G-tube. Not necessarily recommending it, but told me to keep an open mind about it. Some families really like it after they get it. He wants me to follow up with the pediatrician on another (damn) swallow study. He mentioned that a couple times, so did the ER doc. aaarrrgggh. He’s going to admit Maria in their Pediatric Epilepsy Monitoring Unit in July. The papers say the child stays for 2-5 days or longer if necessary. I showed him the 2 videos from school and the one we took in May 2007 of Maria having seizures and he didn’t see anything in any of the videos (even ours) that looked like a seizure to him. He did reach out and touch Maria once when she moved her arm and said that looked to him like it could’ve been a seizure. What?! Since there’s so much confusion about it, he’d like to see her EEG because that’s the only definitive proof of what is/isn’t a seizure, and I need some additional info to provide to the school next year.

He said most kids aren’t adversely affected by using generic meds. Although we bumped Maria up a lot on one of her meds, he says she’s still pretty low dosage compared to some of his other patients. The seizures could be increasing the aspiration or the other way around. There’s no specific way to determine an absence seizure vs spacing out and not paying attention. The main thing is if you can get them to react, smile, etc, then it’s not a seizure. Calling Maria’s name is not a good way to determine if she’s having a seizure or not. He’d never heard of fish oil stopping seizures, but it is consistent with a ketogenic (high protein, low carb) diet, and fish oil is good for the brain.

I think that was about it. Every time we see him, I like him better. I appreciate his approach; it’s methodical and measured and thoughtful and conservative. I didn’t ask him about the 2 new meds, dang it, so I don’t know if we should start them or not. Probably not until the antibiotic is done because holy crap we have to give her a lot of drugs these days! Ridiculous as it sounds, I’m looking forward to the seizure study because he knows Maria (and us) better than the other doc did. Their PEMU has been running for longer than the other one has (the other one was fairly new when we stayed there 3 years ago). I’m interested to get some answers and am confident that this doc won’t say “no more questions” like the other doc did the 1st time we did this…

OMG. Only 1 more full day with Manolis. and OMG Maria’s not in Kindgergarten anymore. She’s going to be 6 years old in less than a month and going to 1st grade. wow

It is never a dull moment in this household! Within hours of my return from Oregon last week, I started to feel a cold coming on. Within hours after that, Maria started getting something that has settled in her chest. Took her to the doc Friday, who wasn’t too concerned, gave us an Rx for steroids, which I didn’t fill until Monday after the school nurse listened to her.

Grandma & Grandpa came to visit from Albuquerque over the weekend. Hardly ever left the house, but had a nice visit anyway. I hope they didn’t go home with anything more than a few brownie bites from us. Uncle Andy and Manolis both came down with something too.

Maria came home early Monday (as I predicted), but stayed at school all day Tuesday (which I did not predict). This morning I suctioned her minutes before the bus came; she was making a noise like crying, like she was very uncomfortable, but stopped after I suctioned her. I was ready to tell the bus driver I was keeping her home. She was very upset and agitated and crying/moaning/yelling at school too, so she came home very early today. The nurse sounded worried and a bit frazzled because the last days of school are hectic and Maria needed a bit more attention than they could give under the circumstances.

I called the pulmonologist. They can’t get us in for 2 wks, but the nurse gave me some good advice, including making an appt with the pediatrician for the morning. Manolis said Maria was doing great, happy, breathing well. Ahhh. Then very shortly after, I got a panicky call from Nanny Sue saying she thinks Maria needs to go to the ER. I said we have an appt in the morning. I don’t think that’s soon enough. We could get a chest xray this afternoon to see if it’s gotten worse. I think she should go to the ER rather than driving all over town. I could hear her (Maria) struggling to breathe in the background, so I left in the middle of my meeting, called Manolis on the way home, and took Maria to the ER.

She didn’t look good to me. Lethargic, pale, clingy, sick eyes. We got seen in the ER within minutes–literally. When they hear hydrocephalus, shunt, cerebral palsy, seizures, asthma, then she gets the princess treatment. Of course upon her initial exam, the felt it wasn’t life-threatening, so that’s when the waiting began…. We gave her a breathing treatment, then waited a very long time for chest xrays. The ER docs saw aspiration pneumonia in the xrays, but had to wait for the radiologist to read them. S/he didn’t comment on that part of her lungs, but the ER docs were convinced that’s what it is. Her blood oxygen was in the high 80s-low 90s, and they said if we wanted, they could justify putting her in the hospital on oxygen and IV antibiotics (exactly Sue’s prediction), but I said, nope, we’ll take her home. We watch her very carefully and will bring her back if anything worsens. 4 1/2 hours later, we’re on our way home. Manolis got to the pharmacy with only moments to spare to get her antiobiotic, while I tried to feed her. ha!

She slept through much of it this afternoon, and is sleeping peacefully now. So much for the last week of school. She will also miss her last day of school, but I think she’d rather stay home anyway. Poor baby! The pulmonologist nurse said we should give her breathing treatments (which take at least 10 minutes) every 3 hours round the clock. Yeah. Tomorrow is our neurologist appointment. Funny how the past week of breathing issues has erased the past 3-4 months of seizures right from my consciousness. I’m going to have to get my you-know-what together before going to to doc so it’s not a wasted trip. As I said, never a dull moment.

Oh yea, and I got the 2nd email this morning from British Airways; this one cancellling the 2nd leg of his trip Saturday. I was on hold for almost 2 hours to rebook the 1st leg. Aaaarrrgh!!! Piss poor customer service!!! Manolis finally got through, after more than 90 minutes on hold and got good connections on the same day, but 12 hours earlier. So now we get to leave the house at 4:30a. That should be fun! The thing that keeps me going is he really needs a break from all of this.

Since my trip to Spokane was such a disaster (Maria’s seizures), I’m surprised I left again….. Last week I went to DC and things went better. Before Spokane, I didn’t tell her what was going on. Before DC, I explained to Maria where I was going and how long I was going to be gone. I was gone for 3 nights, 4 days. She slept a lot, didn’t eat much, but didn’t have to come early from school ever. I was home for 3 nights and now I’m gone again. This time in Oregon. Andy said she’s been cranky today. She was stiff this morning when I said good bye. I sure hope she does ok….

I went with Maria and her class on a field trip to the World Wildlife Zoo In Litchfield Park. She did great all the way up until after lunch when it was getting a little warm. You could just see it when she hit the wall. So we sat in the air-conditioned cafeteria until it was time to go. She slept all the way home and for the rest of the afternoon in school… But before that, she seemed to enjoy herself. She seemed to remember the baby manta ray “petting pool”, because when we walked in that room, she started grinning. Elisa was holding her so she could put her hands in the water and touch the fish. That was her favorite thing. The petting zoo part was ok, but the deer, especially, were very aggressive — they kept eating people’s clothes! I had a skirt on, so they grabbed that a lot, and they also grabbed the kids’ t-shirts. We’re talking about 5-year old children! It scared quite a few of them, so I kept helping them out while I was in there. Maria grabbed a baby goat’s ear, but didn’t seem to bother it.

Only 2 more weeks of school, which means only 2 more weeks until Manolis goes to Crete for the summer….

Oh yea, and we’re still having trouble with the state regarding habilitation for Maria. Our latest “advocate” is full of attitude. I honestly do not know how to handle it. Her attitude and tone is apalling!