Maria Rose

We finally got home this afternoon at 5ish. Last night they moved us from the PICU to a regular room. Much less nurse presence (of course), restroom down the hall, similarly uncomfortable bed, much more noise. The 1st night I didn’t get much sleep because the monitors kept going off (and there was that pesky 64 pulse ox reading that got them stirred up until Maria sneezed and went back into the 90s). The 2nd night I didn’t get much sleep because Maria was awake and pulling at her tubes and wires. Once I saw her with one of the EEG wires in her fingers, and I kept thinking she was going to start pulling the NG tube out while the milk was dripping in (she was on continuous feeds all night). Last night I didn’t get much sleep because they moved us at midnight and Maria was awake until about 4am.

This morning Maria wiggled one of her IVs out. She almost sneezed the NG tube out once, she almost pulled it out a couple other times. They had her arms in soft splints sometimes to keep her arms straight and prevent her from pulling things out.

She was more awake and alert today. Drank her milk when I gave her a bottle. Wasn’t much interested in eating until we got home. Didn’t get the Rx for rectal valium, not sure why; so now I’m still a little confused about our revised seizure plan. It’s not the same as what I discussed with the doc yesterday.

This little incident was pretty serious. Many people in the ER were thinking the worst. I didn’t allow myself to go there. I sure as hell hope it doesn’t happen again. It was not a good thing to come home to paramedics in the house and Maria hooked up to tubes and wires and still having a seizure. I did get some video of it to show her neurologist, not sure I want to watch it though…

Hell of a couple of weeks.

Quick update to say Maria did get home this evening. She’s drinking OK although not eating much yet. She and Cathy are pretty much exhausted so will take it easy for a while.

Maria’s been asleep pretty constantly during her hospital stay, mostly of course due to the extra medication. They took her off the new anti-seizure med (which I keep forgetting the name of) so she is now just on a slightly higher dose of her regular meds.

The big fear with a long seizure is the chance of brain damage. The neurologist said the seizure was short enough that it should be fine. It’s only when seizures are 30+ minutes that there is a problem. However Maria now has a new emergency drug. We will still use the clonazepam wafers if she has bursts of short seizures but if she has another long one we get to use diazepam – rectally administered liquid Valium. Yippee.

Since Maria’s been asleep so much they have had to consider how to administer her medicine. Depakene has an IV version but Trileptal does not. We tried giving her the Trileptal orally by dripping it very, very slowly into her mouth when she was kind of awake but that wasn’t practical in the long run. So for the first time in five years (nearly to the day in fact), Maria has an NG tube. It’s just temporary but it’s a disappointing setback.

She has eaten and drank pretty much nothing in this time, again because she’s been sleeping so much. She’s been getting IV fluids and today started getting Pediasure through her (grumble) NG tube.

Since they discontinued the extra medication today they expected her to wake up, but the little imp kept sleeping all day. She woke a little when they took off the EEG leads but didn’t want to eat or drink, play with her toys, and didn’t really care I was there.

The neurologist wants to release her tomorrow (Saturday) and he’ll be on shift them so there won’t be the usual problem of the backup doctors chickening out and keeping her. However if she doesn’t wake up soon and start eating and drinking, they will keep her until she does. They wanted to move her out of the PICU into general pediatrics today but there are no beds available so they are keeping her where she is for now.

Manolis was of course pretty unhappy about the news. However he’s glad he’s not here. He said if he had seen Maria in such a long seizure he would have died. All this hospital stuff plus Maria being so drugged would totally freak him out so it’s just as well he’s in Greece. He knows we are taking care of it.

Keep your fingers crossed and hope Maria comes home tomorrow.

Although she dodged a hospital stay last week, Maria was not so fortunate this week.

Sue called Cathy today to tell her Maria was having a seizure…for nine minutes. Cathy told her to call 911. By the time the EMTs shut the seizure down with Valium, it had been going on 15+ minutes. They took Maria to the ER and of course they admitted her to the PICU. Even when she wasn’t on medication Maria’s seizures never lasted more than one to two minutes.

The doctors are baffled. They did a CT scan and her shunt looks OK. They are doing blood cultures looking for infection. They are going to check with Maria’s usual neurosurgeon to see what he thinks. They bumped her dosage of seizure meds and added another one (can’t remember the name) for right now. She’s in the hospital her regular neurologist practices in so he will be able to coordinate her care rather than having some stranger do it.

The obvious question is – what changed? Maria has been on the antibiotic Augmentin for her latest respiratory thing. One of the ER doctors said she thought Augmentin had been known to lower seizure thresholds. I looked it up and as I understand it it’s actually the aspartame (artificial sweetener) they add to Augmentin which has been linked to seizure activity. That may not be the cause but considering that in addition to Maria’s usual terrible yeast infection, they decided to discontinue it.

They are going to monitor Maria overnight and see how she responds. She’s drugged to gills right now but was kind of starting to wake up when I left this evening. They did an EEG and even I could tell there were significant difference between her right brain and left brain activity, though the on call neurologist wasn’t sure what that meant. They are going to keep her on an EEG tonight and see how the trends change. Since she’s got an EMU appointment in July they are going to try and bump it up and do it now, but they weren’t optimistic about that happening.

Manolis is pretty much going to burst a blood vessel when he hears about this. He’s been back in Greece less than a week. Sue and I both said he’d want to jump on the first plane back but that would just be pointless and really, really expensive.

We are hoping this will just be a day or two, but Maria is never a day or two. Since the weekend doctors never want to take responsibility for releasing patients my guess is at least Monday before she gets out.

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!

Maria did great on the new medication dose for a couple of days. Then Sunday when I was over I noticed she kept starting for no reason. Those of you who know her knows she’s kind of a jumpy girl anyhow but these were different. My suspicion was that she was having absence seizures, the kind where you just kind of fade out for a few seconds, and then starting when she suddenly came back.

Then Tuesday she apparently went totally ballistic. She had lots of seizures at school. They gave her the Clonazepam and it didn’t shut them down. At one point she aspirated really badly on her milk, which just made things even worse. Meanwhile Cathy was out of town on business and said she almost just jumped on a plane and came home.

She’s continued to have a bad week and is home from school today. Cathy’s back but of course she and Manolis are still worried. Maria’s also been acting like she has some kind of stomach bug. Since she’s spent so much time in the nurse’s office this week, where all those sick kids hang out, she might have gotten it from there.

Cathy’s been trying to get the school to video the seizures she’s having at school since what they describe is different than what we see, but apparently videotaping kids requires practically a presidential order so it’s been slow going. OK I understand protecting the kids, but if the freaking parent is providing the camera and asking for the video, shouldn’t that be enough?

I’m going over to take care of Maria later today and I think we’ll take it pretty easy.

Tuesday or so, we increased Maria’s meds again from 5 ml twice a day to 4 ml three times per day. Tuesday afternoon after school, hippotherapy, half a session of home PT, and 2 4ml doses of the medicine, Maria fell asleep. She slept from 4:30-9pm, drank some milk, took her 3rd dose of the white medicine, and ever since then, she’s been much better! She’s been cheerful, not sleepy, few or no seizures, no calls from school. She was a little crabby after school today, but so was I. It’s Friday. It was a long week.

It’s hard to believe we increased “the white medicine” by 250% in a mere 2 months!! Maybe we finally found the right dose?

Nanny Sue only worked about an hour this week. I’m a little worried about the summer. If Maria doesn’t go to summer school, then Nanny Sue is supposed to be here 10 hours/day for 3 days/week. These days she’s having trouble with 12 hrs/week. She assures me it will be fine, but I may need a back-up plan. In preparation, I think I’m going to go see The Back-up Plan (movie) this weekend….but I digress…

Now if only my crap would clear up. Today was a particularly rough one.