Archive for August, 2010

Pulmonologist update

At this point, we’re really only monitoring Mariella.  Her lungs sound good today, and she performed well on the PFT’s.  We’re all aware that it doesn’t ever really mean anything, but she isn’t actively sick or flaring, so we assume that it’s all good in there.

Dr. Duda is testing her for Adrenal insufficiency, in light of what happened with my friend’s little boy.  Dr. Duda is B’s doctor as well.  If her Cortizol level is fine, we will attempt to decrease her steroids.  If she stays stable, then it’s all good. If she crashes and burns, then we’ll discuss what needs to be done.

Basically, we’re going to keep doing what needs to be done.  We’ll head to Boston, and see what they have to say.  Then we’ll go back to Dr. Duda for a follow up.

She grew 1/8 of an inch, the first growth we’ve seen in almost 2 years.  She lost almost a pound…despite actually eating well in the past few weeks.  That is something to ask the GI about.

Getting ready for back to school

As Amy, from , has posted about several times…when you have a child with a chronic illness, back to school isn’t just about getting a new backpack, and maybe a few new outfits…there are other things to think about.

Medications…are all the scripts up to date?  Do I have all the Doc’s orders in place?  Do I have spare inhalers for school and home?  If all that is set, I can breathe a bit easier.  We’re heading to the doc on Tuesday, and I’ll have all that stuff together on that day.

Teachers…Apparently, it’s very unusual to know who your child will have for a teacher at the end of the school year.  We’re very lucky that along with the end of the year report card, the teacher assignment is also given out.  This allows me to make email contact with the teacher at the beginning of the summer.  So, Abby’s teacher has known since June that I have some concerns, and that I was going to contact her before school started to set up a meeting.  Abby takes some big gun medication, and she has some concerns that need to be addressed.  That will be taken care of on Tuesday afternoon.  I also don’t feel comfortable sending Mariella off to school without letting the teacher know what is going on with her.  The school nurse will brief the teachers about the children with medical issues before school starts, but she thinks I’m crazy, and that there is nothing wrong with Mariella, except for a little asthma.  However, I already know that she is going to be missing a fair amount of school, though I don’t know how much, or when…so the teacher needs to know that.  Also, I think I need to talk to the principal and find out how much school she can miss without it being an issue (without a 504 plan or other accommodation in place)  last year, it wasn’t a big deal, Kindergarten isn’t mandated by the state.  Legally, they couldn’t do anything to me for her missing school.  This year, I believe that I’ll need documentation about absences, but I’m not sure.  I’m meeting with her teacher on Tuesday morning.

We also have to get the school supplies and back to school outfits.  I realized I have to get Mariella new clothes, even though she still needs a 5 or 5T…because Abby wore them for 2 seasons, and Mariella has already worn them for 3 seasons.  They’ve all seen better days, and quite honestly, I’m sick of looking at them.  We’ll try on the 6’s and 6X’s…but since she’s fitting fine in the 5T summer clothes, I don’t think she’ll be doing a massive growth spurt before Christmas. (thought we can always hope.)

I’m ready for school to start…the girls are ready for school to start.  It just takes a bit more planning.  This is the most “proactive” I’ve ever been.  In the past, I’ve waited till school started to make the appointment, but I really think that I needed to get everything settled before they climb on the bus.   First day of school…Sept 1st!

Went to the doctor today

I’m curious if other parents have this experience when their children go to the doctor, or if my child is just weird.

It starts with the phone call.  I ask to get her in to be listened to.  They ask me if it’s an emergency.  I say that I don’t believe it’s ER worthy, I just need to get her listened to, because I’m not a doctor, and don’t always hear everything.  She then says “I’ve talked to you before, you don’t call to get her seen if there isn’t a reason to…I can get her in at 9:45…but you know the drill…if she goes south before that, come in and we’ll see what we can do”

We walk in, and I check in.  The Med Tech in the window doesn’t even need our chart to greet us, and run our insurance information.

Mariella’s name is called, and the tech that brings us in will comment if it’s been more than about a month since they’ve seen us…or will say they missed her when I brought her sister in…if she didn’t happen to come with us.

Mariella gets weighed.  She notices the number and comments on it.  Today it was “wow…it says 37.8…that’s ‘dot 8 more than last time’ <giggle> but I haven’t pooped in 2 days…so that’s why.”  To which I get a look from the nurse, and I say “we treat it after 3 days…don’t worry, I’m keeping an eye on it”

We get into a room, and they get an O2 reading.  It’s 96% and the nurse says, “can you take some big breaths for me?”  Mariella does, but goes on to tell her that “96 is actually really good…I normally have it at 92 or so”  another look from the nurse and I nod.  A notation goes into the chart next to the 96% that says “Mom is not concerned”  Not really accurate…I AM concerned…but I’m not going to freak out over a reading of 96%.

Then, the doc comes in…talks to us for a bit…listens, looks, feels her belly.  THEN looks through the chart again…I didn’t ask what he was looking for. Listens again…we get told she has asthma.  Not in a condescending manner…I was concerned about pneumonia or bronchitis.  We had a birthday party to go to, and she just isn’t clearing like I like her to, and I didn’t want her to bring nasty lung germs to a party where there were 2 other respiratory compromised kiddos.

I have to promise to  call her specialist if she isn’t better by Monday.

I was wondering if she had gained any weight over the summer…I’ve got my answer.  Once she poops, she’ll probably be just about 36 lbs, which is a loss.  At this rate, she’s never going to be 40 lbs.   That’s her goal…I’m not sure why…but she wants to be 40 lbs.

On a related note, I got to talk to my friend who’s son is seen at the Airway, Voice and Swallow center that we’re going to.  They were able to get his lungs and belly under total control.  He’s done so well they were able to get him off some of his lung meds (in doing so, they caused adrenal insufficiency, and he nearly died from the swelling of the brain…all from INHALED steroids…not even from orals) but, hey…they got the lungs better.  She’s been pushing me to make the appointment there for months.  Her son also sees the same pulmonologist as Mariella does…and she was talking about M with Dr. Duda…of course, he can’t answer her questions…but as she was making comments about similarities about her son and Mariella, Dr. Duda made a comment that her observations were fair.  So, it looks like my “invasive testing moratorium” might be over, as they are going to want to do many of them again.  BUT, if it gets her under better control, we’ll go with it.

Feeling a little cranky and bitter this morning

I probably shouldn’t be.  Especially after the couple weeks that a few of my friends have been having.  One friend’s son, due to steroid withdrawal, ended up in PICU, very touch and go…thankfully, he is home, and doing well…a full recovery is expected. (this one makes me quite nervous, though…because her son has gastroparesis, reflux, asthma, etc.  I don’t believe he was on any oral steroids, just inhaled…and it still caused adrenal insufficiency, and caused a serious medical emergency…so it freaks me out when we get to a point that we can get Mariella off some of her meds)  A second friend rushed her totally healthy 3 year old son to the hospital because he was acting very off…only to find out he’d had a stroke.  Finally, another friend underwent brain surgery yesterday.   So many people with bigger stuff that I have to deal with.  I’m praying for them all…but still, I’m wallowing in my own situation…and then, I feel guilty about it.

Mariella IS better after her flare last week.  She’s not back to baseline, though…and I just think that she should be by now.  I’ll be listening to her coughing, and after a while, I’ll go in to see if she’s ok, and she says “I’m not even coughing”  She doesn’t even notice it half the time.  Or she’ll be coughing, and I can hear the crap rattling around in her lungs, so I tell her to do her acapella…and she’ll tell me that she’s not junky.  I can hear it rattling around in there…and I know that lots of doctors say “if she can clear it with a cough, it’s not a problem”   I really don’t understand that…people with normal lungs don’t walk around sounding as if they are carrying an ocean in their lungs.  Yeah, they might get a little bit of mucous that they can cough and clear…and then it doesn’t happen again for a long time.  She rattles and rattles and coughs and moves it….then within 5 minutes, she’s rattling again.   This is ALL the time, not just when she’s flaring.  She does her airway clearance all the time…it’s just even MORE when she’s flaring.    I don’t hear any rice crispies in her lungs, and she’s got no signs of infection…so I’m not really worried about pneumonia (though I’ve missed it before)

Then, we’ve got the whining, and general Miss Pissy Pants that comes hand in hand with feeling crappy.  I get it, I DO…I get kind of whiny when I’ve been flaring for a while.  I’d love to just cuddle her and indulge the whining until she feels better…but she might be crappy now for a month…or more…and, well, she’s 6, not 2…and other people don’t understand that while you might not be able to look at her and know that she’s not feeling good, she doesn’t feel good, and that’s why she’s whiny and sensitive.

Every once in a while, I just want to yell, “STOP THE RIDE, I want to get off.”  I’m tired of not being able to fall asleep at night until I hear her move in her bed. (I keep the baby monitor in her room)  She is such a crappy sleeper now that if I even open her door when I go to bed, it wakes her up…and then she has a hard time getting back to sleep.  Or I lie in bed, counting her respirations over the monitor.    As I always say, it is what it is…it’s just that sometimes…I get a little overwhelmed.

All right, I’m done whining now.

(oh, and I finally got off the River Denial and made her appointment at the Airway, Voice and Swallow Center in Boston…and it’s for Sept 14th…I was expecting to have to wait for months)

We’re home from Disney…

It was a really good week.  The first few days, Mariella did fine…it was our jaunt to Animal Kingdom (which is just a harsher park, weather-wise.  It’s definitely hotter, and some of the cast members claim it’s MORE humid.) The weather and then the ride with the stupid fog effects just wigged her lungs out.

Like I mentioned before, on Sunday, I asked for a medical entrance pass.  The Cast Member I spoke to didn’t think he was authorized to give them out, other than to a party who had a member with Autism.  No big deal…I wasn’t going to fight about it, if it’s not their policy, it’s not their policy.  He did say that if her asthma really became an issue, then to come back.  It became apparent that her asthma WAS becoming an issue, so on Friday, I asked again, told our story, and was promptly handed a medical access point card.

Saturday…it was a HORRIBLE morning.  Rob has been talking this convention up since he bought the tickets…About how he and Abby were going to go every day, and they were going to have so much fun…etc.  So, Abby has been planning to spend every day at the convention, with Rob.  Apparently, Rob was planning on doing something on Saturday that would have been no fun for Abby…AND she wanted to go on the Star Tours ride.  SOOO, he promised her that *I* would drive her to the convention after we went on the ride.  Unfortunately, it wasn’t his promise to make.  I am not a confident driver in new places.  I nearly had a panic attack at the prospect of driving to Disney…where I’ve been numerous times before-just never as the driver.  I also have a (irrational) fear of I 4.  I don’t know why…I’m just petrified to drive on it.  So…I was more than willing to bring Abby to the parks with me…I just wouldn’t be delivering her to the convention center…Rob was more than welcome to go and get Abby…which ever…as long as I wasn’t bringing her to the convention center.

Probably needless to say, Abby had a huge blow out temper tantrum when she realized that things were not going to happen how she had them in her head.  We both ended up in tears, because Rob was making me feel like crap. (and Abby was making me feel like crap too…which I know sounds stupid…she’s NINE…but unless you’ve been on the receiving end of one of her rages, you don’t understand)

We finally got everyone calmed down, so we headed out to Hollywood Studios.  In the craziness of the morning, I forgot to pick Abby’s ticket up off the table…so after a few choice words, I texted Rob, and headed back to the bus to the parking area. (because of my irrational driving fear, I parked at the Magic Kingdom, and took Disney Transpo everywhere else) Before the bus took off, he texted me back and said to just get a day pass for her…so we got off the bus and went back through security.

The security guard mentioned that she had JUST looked a bag with a portable nebulizer in it…then she realized we were the same group.  She asked what had happened, and I said we had forgotten a ticket, but we were just going to buy a day pass.  She told us not to, to go to Guest Services, and they might be able to help us out.  So I explained that it had been a horrible morning, and that in all the stress, I forgot a ticket.  He re-issued the ticket, and because it had been a hard morning, he gave us 3 fast passes to any ride in the park.  We used it for Toy Story Mania…because by the time we got there, the fast passes were all gone for the day, and the wait was almost 2 hours long.  Without the fast passes, we wouldn’t have gone on the ride.

The only time we used the medical access point was for American Idol Experience.  It allowed me to keep Mariella in the stroller, and to get into the theater as soon as they were done rehearsing…so about 15 minutes early.  Other than that, we didn’t have any rides that the line was outside.  If we had gone to the Magic Kingdom, we would have used it more.

I’m so glad to be home.  Mariella sounds like crap.  She’s got a junky cough, and I can hear her rattling when she breathes.  I don’t hear a pneumonia at all, so I don’t know what’s going on in there.  I’m going to give her a day…and if she’s not better, we’ll head to the doc tomorrow.

A drive by Disney post

So, I went to Guest Services as soon as we walked in on Sunday night.  They only have medical Fast Passes for families of children/people with Autism.  Very cool that they are aware that waiting in lines might be a problem for those with Autism.  Not so cool that other people with other very real disabilities (and I use that word, because Mariella’s doctor uses that word) are not afforded the same privilege without being told to “try it out, and if it’s really a problem, come back and see us.”   I don’t want to cause a scene, I don’t want to take something that we’re not entitled to.  In short, we decided to go to Disney at the most humid time of year…and if it’s really a huge problem, we probably shouldn’t have come now.

Mariella is having a hard time with perception right now.  Not entirely sure why.  She was SUPER whiny earlier.  Everything was a problem.  Then, when she talked, you could tell she wasn’t moving air so great.  She wasn’t really coughing excessively, but when she DID, it was full of JUNK.  I made the executive decision to give her a treatment, and I’m glad I did.  When it was done…her reaction was, “wow…I didn’t realize I was so tight, I feel a ton better now.”  The whining stopped, and she was super-pleasant for most of the remainder of the day. (until she got a little dehydrated…and once I gave her a bottle of water, she was fine again.)

I’ve told Rob that we can’t be stingy with the water.  I understand that it’s $2.50 a bottle, but he can either get a bunch of them to bring with us, or we can buy them.  Splitting a bottle between the 4 of us every couple hours is just plain stupid…and is going to end up getting Mariella into some serious trouble.

I may still ask again for a medical Fast Pass when Mariella and I go back…since when I asked if we could just stand in the AC of the Buzz Lightyear ride, until our actual Fast Pass time came up (literally, we were 3 minutes early) The Fast Pass Guardian lady said we were welcome to sit in the shade “right there” but we couldn’t go into the building.  We’ll see what happens, though.   I wonder if they will give me a note or something, so that we can just use the handicapped entrance of rides…when people use those, they don’t get on the ride any faster…I’m not looking for that…but the wait time is usually spent in the AC.  Who knows…we’ll see…it’s really only the rides in the Magic Kingdom and EPCOT that even have wheelchair entrances, because they were built before the ADA was passed.  Just thinking aloud at this point.

The girls are home!!!

The girls are home…only about 2 hours later than I expected them.  Apparently, there was a ton of traffic, AND Mariella had a good blow in the car.  My parents forgot the golden rule of Mariella.  Don’t let her overstuff herself.  I’m SO used to doing small meals, several times a day…they didn’t want to have to stop for supper, so they encouraged her to finish her dish.  I don’t ever encourage it, in fact, in some restaurants, I DIScourage it.

SO, she’s feeling pretty crappy right now.  At least I can pin down WHY it happened.  However, she threw up mac and cheese, which is a STAPLE around here.  It will be a huge problem if she stops eating it.

My parents were fabulous.  They carried the Trek with them everywhere.  She only needed a few treatments.  They also carried her rescue puffer, and she didn’t need that at all.  She DID ask for a treatment at bedtime, and she was satting on the low side of normal, but, even a 5 minute treatment at 10pm was going to take too long, so I gave her a couple hits of the Xop.  If she needs a treatment in the middle of the night, I’ll do that.

My folks gave them all their meds at the appropriate times, they made sure Mariella did her airway clearance, they made sure they built time in for breaks.  They lucked out, because apparently, where they were in VA wasn’t suffering with record heat and humidity.

Tomorrow is a marathon day of getting things cleaned and packed, so we can leave on Sunday.  I’m already beat…I can’t imagine that vacation is going to be all that relaxing.

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