Back to her old self

Maria is back to eating and drinking fairly well. She's more alert and happy than she has been. She may be getting some pain from her two-year molars, but we've been blaming her two-year molars for about a year now. Things seem to be getting back to normal.

I can't remember if we've mentioned this before, but Maria's going to be famous. A reporter interviewed Cathy regarding an article for the Phoenix New Times on how Arizona is gutting their early intervention program. They are going to use Maria's picture in the article. It should come out soon and I'm hoping there will be an on-line version I can link to.

Home at last

One of the reasons Maria wasn't home yesterday is that the hospital said they were paging both the on-call neursurgeon and Maria's regular neurosurgeon and neither one was answering. Well, Cathy saw the on-call NS in the cafeteria this morning and he was surprised to see they were still there. She said the hospital had been paging him and he said he never got the page. They also said that when they paged her regular NS a different doctor called back, so it sounds like they didn't have the correct pager number for either doctor. Gee, I'm glad she wasn't bleeding to death.

But all that nonsense has been taken care of and Maria is finally home.

A prisoner of the bureaucracy

Maria's EEG was fine. It showed no seizure-like activity at all. She's doing better, though still not 100%. All of the doctors said that she was OK to go home yesterday.

So is she home? No.

Despite the fact that the doctors think she should go home, none of them are willing to step up and sign on the dotted line. They are all afraid of actually taking responsibility so Maria is still in the hospital. They are basically defrauding the insurance company out of a medically unnecessary day of hospitalization because none of them have the guts to make a decision.

They are going to try again today. It's pretty much a coin flip, since it's the weekend and god forbid there should be doctors available in a hospital on a weekend.

And, as long as I'm ranting, I just want to say that Blogger sucks. I've been trying all morning to get this entry posted and I keep getting errors. This is not a new situation and I really get tired of how unreliable Blogger is. One of these days I'll move this blog to my site, but that requires a fair amount of effort so I haven't found the time yet.

In less ranty news, there are some new pictures up.

Still in the hospital

Maria's out of the PICU and in a normal hospital room. When I talked to Cathy this morning the neurologist hadn't look at the EEG yet. We still have no idea when they are going to send her home. I keep saying, "probably tomorrow," and I'm always wrong so I won't say it again.

Out of the ICU...maybe

The NS has ordered Maria moved out of the ICU into a regular hospital room. He wants to keep her over the weekend, but might let her go early since he knows Cathy and knows how well we watch Maria. Her heart rate has started to play games again and she never did start drinking very much. She's still sleeping a lot but not as much as before.

Right now Maria is getting an EEG because another theory, since they still have no idea what is causing this nonsense, is that she could be having seizures. The NS was talking about doing exploratory surgery to see what's going on with the shunt, but has decided against it - which is good because I think Cathy would have said, "No way!" unless there was a really good reason to poke around inside her skull. This NS isn't as knife-happy as many surgeons are.

Maria doing better

Maria is still in the ICU but is doing much better. She is awake and eating. Her heart rate has stabilized and all of the bacteria and virus tests came back negative. They still have no idea what happened, but it appears to be over. They are going to keep her one more day but, barring any sudden problems, she should get out tomorrow.

No new info

I'm leaving shortly to head down to the hospital. I want to be there when the NS makes his rounds. I don't know how long I'll be there, but I'll update again later today.

Maria's little emergency

Sunday night, Maria was acting like something was bothering her. She kept flailing around and didn't sleep all night. We didn't really think much of it at the time, but that was probably the start of whatever is going on right now.

Monday she had her barium swallow. She ate fine that day, but it was very hard to get her to drink. We tried milk and different juices and she'd drink a few swallows then very pointedly push the bottle away. All day she drank about 12 oz. This also made the barium test a little tricky, but Cathy was able to get her to drink enough that they could get results. We also noticed she was hot but never got around to taking her temperature. Maria is frequently hot and sweaty and we've just gotten used to it.

Tuesday things got worse. Cathy called about 5 pm to say Maria had drunk about 2 oz all day and was throwing up everything she ate. She hadn't passed the barium (barium makes white poop and it's obvious when it's gone through) which was a bit of a concern. She was also running a fever of about 101. Cathy decided to call the nurse hot line. The nurse pretty much went, "OH MY GOD!!! Get to the ER right this second!!!" She was concerned about dehydration, but also about the barium sitting in her system.

So they headed down to children's hospital. Chest x-rays and urinalysis were fine, but her blood work showed an infection. A shunt series and CT scan showed the shunt is working fine but they decided to keep her overnight for observation. They are giving her IV fluids and the on-call neurosurgeon is going to talk to Maria's NS this morning. I imagine they'll send her home later today but you never know. I'll post more when we know more.

UPDATE 11:30 am: Not much more to report. The on-call pediatrician noticed her pupils were like pinpoints, but her pupils always do funny things because of her optic nerve problems. She continues to sleep and sleep, and not eat or drink much. Manolis thinks they are going to keep her in the hospital, but I'm fairly certain they will release her today. The neursurgeon hasn't been by yet, which is the visit we are really interested in.

UPDATE 12:30 pm: That pediatrician continues to be concerned, and personally I think is overreacting which is common with pediatricians around Maria. Maria's heart rate has been low and her blood pressure is up a hair. She continues to sleep but woke long enough to take 6 oz of milk (the most she's had in almost two days). The pediatrician is talking about putting her in ICU so they can monitor her more closely. He is thinking there is increased intercranial pressure, though since the neurosurgeon doesn't think so then I doubt it. Maria's own neurosurgeon hasn't made an appearance yet.

UPDATE 1:00 pm: Maria's neurosurgeon came by and he is also very concerned. Unlike the on-call NS, he thinks that her ventricles might be enlarged. However they are comparing a CT scan to an MRI which makes it hard to tell. He ordered another MRI and is probably going to put her in ICU. Based on the results of that, they might tap the shunt which, I believe, checks the pressure directly as well as allowing them to examine her cerebrospinal fluid. Yuck. I guess the little munchkin won't be home today after all.

UPDATE 4:30 pm: Maria is in the PICU now. Her MRI was apparently fine (that message is from the neurosurgeon to the nurse to Manolis to Cathy to me so the specifics are a little sketchy). She's still sleeping all the time, though they can rouse her. They told Cathy not to give her anything eat or drink just in case something comes up that makes them decide to do surgery. As far as I know, they aren't giving her any drugs except Tylenol. Her heart rate continues to fluctuate down to the 55-60 range and they are puzzled by that - I think that was a big part of why they decided to move her to PICU and monitor her more closely.

UPDATE 6:00 pm: Cathy talked to the neurosurgeon. He said Maria's ventricles are larger than they were earlier this year, but about the same size as they were a year ago. Many of Maria's symptoms, like the fever, are NOT symptomatic of shunt failure. He's adopting a wait-and-see attitude. He's not going to tap her shunt because he doesn't think he'd get enough fluid for it to matter. He has reserved an OR for tomorrow just in case but doesn't think he will need it. Maria is apparently awake and smiling now so maybe she's starting to feel better.

Barium and hearing aids

Maria had a barium swallow yesterday. She did fine with solids and the thick liquid, but had some penetration with the thin liquid (which means it headed toward her airway but didn't actually go into her lungs). So they said continue as before with the thickener and start feeding therapy. This is pretty much as expected since the purpose of the test was an evaluation before starting feeding therapy anyhow.

She also saw the audiologist. The most startling news was that they are going to take her hearing aids away, but not because she doesn't need them. We realized these were loaner hearing aids, but didn't realize that the loan period was so short. It was supposed to be for six months and they got special permission to extend that to a year, but that year is up. So Cathy either has to buy new hearing aids herself (not cheap and not covered by insurance) or go through a state program to get them for free, which means forms and bureaucracy and waiting.

This is further complicated by the fact that they still aren't sure if she needs them. Her hearing threshold with the hearing aids was 65-70 dB, and the threshold without the hearing aids was 70-75 dB. That's a small enough difference that it could be statistical error or fatigue. They are going to discuss it and call next week.

Hawaiian Vacation

11 days without therapies, devices, etc in a tropical paradise, so why don't I feel more relaxed? Sue (nanny), who's from Oahu, flew to Honolulu with us on Sunday. She drove us around Monday, then dropped us at the cruise ship that afternoon. (We found out later that her mom lost consciousness a few hours later, went to the hospital, turns out she has some sort of mass in her lung that might be malignant, they're not sure yet.)

We went to Maui, Hilo and Kona on the Big Island, and Kauai; rented cars in Maui, Kauai, and Oahu (hate driving in Honolulu). Spent one day before the cruise and a few days after on Oahu. We chose Norwegian Cruise Lines (Pride of Hawaii) because they don't have required formal nights and the meals are "freestyle", which means more flexibility, and the ship is new. The ship was very nice, pretty, clean. Good itinerary. But lousy food and crappy service (American staff).

Maria did awesome, considering she didn't eat or drink as much as normal. Plus, as Andy said, she hardly had any vegetables. Lots of papayas and bananas, but not many soft veggies appropriate for a princess. I did manage to get her some Pediasure, which probably helped, but I wouldn't be surprised if she lost a little weight. The Sit n Stroll we got was the best $200 I spent--it's a stroller that converts to a car seat, airplane seat, high chair. She really seemed to enjoy all the adventure, new places, different tastes, swimming in the ocean, no therapies, no hearing aids, no AFOs. I think she knew we were going home because she slept fine the entire trip, until our last night in Oahu. And she hardly slept on the red eye flight home, so you can imagine we have all been a little groggy the past 2 days since we've been home.

The only semi-troubling thing was how many people commented on how sleepy she looked. I'm sure it's because she doesn't often make eye contact and she's rather floppy, and I know they have no idea, but after a while it's rather tiresome/wearing/whatever is the right word. One time Maria was face down on my legs playing in the sand and a lady asked if she was asleep, so I said, "no, she's just lazy." What am I supposed to say, "no, she's significantly developmentally delayed and can't sit up on her own"? One lady told us about the Hammesfahr Neurological Institute in Florida and how they did wonderful things with her autistic grandson. Something to think about.

As Andy said, fortunately we weren't affected by the earthquake. We'd left Kona the day before and got back to Honolulu after the electricity came back on. I think I felt something on the ship (we were docked at Kauai), but who knows. And, yes I was totally excited about the earthquake and volcanic activity from a geologic perspective. One of the coolest things we did was cruise by Kilauea at night and saw the lava pouring into the ocean--so awesome!!

Quick post-vacation update

The gang is back from vacation and had fun. Maria liked swimming in the ocean and playing in the sand. She has a fair amount of color in her cheeks. She didn't eat or drink as much as she should have. Cathy said it was surprisingly hard to find milk or vegetables in Hawaii. Maria's eyes are still a little swollen, but the eye doctor said that was normal even this long after the surgery. He still wants Maria in glasses and she goes back to him right before Thanksgiving so might get them then.

Monday Maria has a barium swallow and an appointment with the audiologist, possibly for new hearing aid molds. After that I believe her schedule slows down for a while.

Whole lotta shakin' goin' on

Just a quickie update. As most of you know, Cathy, Manolis and Maria are in Hawaii at the moment. They were on their cruise and I guess they docked a few hours after the earthquake so they missed the fun. They were going to Honolulu today and had heard the power was out so they are curious how much of a mess it will be. I'm sure the geologist in Cathy wishes she'd been there.

Cathy says Maria's new favorite food is corn on the cob, which she can eat by herself.

Post-op report

I got the word from Cathy that Maria's surgery went pretty quickly. Maria was sleeping when Cathy called and I'm hoping she just slept most of the day away, since the longer Cathy can keep her eyes patched the better she'll heal.

The doctor said that the oil in the other, non-inflamed glands was still thicker than normal so she is likely to have recurring bouts of chalazion for her whole life. We just have to be aggressive the instant a new one shows up to use the compresses so she doesn't have to go through this again.

He also took the opportunity to give her eyes a better exam since she was under anesthesia. He said that the interior of her optic nerve just isn't there; the nerve is hollow. It may be that it never formed right, it may be that it was damaged (probably by the hydrocephalus). He suspects it's probably both. It's not degenerative, so it won't get worse. As her development continues her brain will compensate for the damage, though we don't know how much.

He also evaluated her for glasses. He said she was definitely very nearsighted, and said her vision was 4 (we're assuming that's diopters). I found a website that says that's equivalent to 20/400 vision which is quite severe for her age and it will likely get worse as she gets older. It may even get bad enough that they can't correct it to normal vision. However he said he doesn't want to put her in glasses yet, that we'll wait another couple of visits before he does that. I'm not sure why, unless he just wants to re-evaluate her after she's fully recovered from the surgery or something. After all glasses would go so nicely with her hearing aids, AFOs, and shunt. She'll be more machine than human soon :)

AFO + EEG

Friday Maria got her ankle-foot orthothics (AFOs), and I hate to say this, but they're awfully cute. Blue plastic with butterflies, and pink straps. We got her some pink sandals and cute socks and she looks stylin'. I think she likes them, she's been playing with them and it seems like they might help her be more aware of where her feet/legs are. They want us to keep them on when she's in her stander, no problem, and work up to keeping them on all night--that will be interesting.

Today we started our day at the eye doc for our pre-operation appointment (actually we started much earlier with a walk. I put Maria to bed late and got her up early so she'd be nice and tired for her EEG). He's going to look at her optic nerve and her prescription to see if she needs glasses while she's under. He gave us a nice note to take on vacation that says, "Maria's bruised eyes are from eye surgery. Her family takes fantastic care of her!" Ha! Take that! I will say if anyone looks at us askance because of her post-op black eyes.

And then we scampered on to the EEG, where Maria performed admirably--she fell asleep about a minute after she was wired up and the lights went down. The neurologist left a message that said Maria's EEG is abnormal and she wants more detail on the "episode" Maria had a couple weeks ago, prompting the EEG. Andy reminded me that her past EEGs were also abnormal. (I remember them saying there was potential for seizures, but abnormal, hmph!)