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Archive for November, 2009

-ies?

At two years old, the triplets obviously don’t understand the concept of pregnancy.  Never mind that they aren’t very verbal yet, but it’s a pretty sophisticated concept for them to grasp.  They don’t have any sense of time beyond the very immediate past and the present.  I’m not clear how much they understand about the future, but I’m guessing they don’t have a sense of much more than the next few minutes or hours.

Still, I told the triplets that there is a baby in my belly.  Abby and Sam didn’t seem to react much, but Ellie seems to have absorbed the news.

She keeps poking my belly and saying “Babies!”

Um.

No.

BabY, not BabIES.

Oh please don’t let this child be better at sensing the future than highly paid ultrasound technicians and perinatologists.

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So I’m OB-less.  You know that.  But, of course, out of the goodness of their hearts* the practice “is available for emergency medical care only until 12/20/2009.”  So… what constitutes an emergency?

I mean, does the fact that I’m in excruciating pain right now and don’t know what my pain management options are constitute an emergency?  I’m guessing not, but I”m not certain.

So, if that’s not an emergency, does the horrific rash that is running up and down my whole arm and seems to get worse when I get a dose of IV Phenergan constitute an emergency?  I mean, it’s not life-threatening, so is it an emergency?    It’s getting worse, but it’s still mostly limited to a fairly local area (from my left shoulder down to my left wrist).  Is this an emergency?  I’m guessing not, but I’m not certain.

And if neither of those are emergencies, try this one on for size:  What about the cramping and bright red spotting I’m having right now?  It’s been going on throughout the pregnancy – on and off, mostly off and now it’s back. Does this constitute an emergency?  I’m guessing not, but I’m not certain.

I’d continue to speculate – but I have an unbelievably bad toothache right now, and my brain isn’t quite functioning.  Sigh.

 

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*Oh, right – that would be “out of compliance with the law”

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Amused

I know it seems logical and all – but I find it astounding that the FIRST thing ANYONE asks me when they hear I’m pregnant is “How many are in there this time?” or something to that effect.

I mean, don’t you think I’d mention the multiple factor if there was one?

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Silver Lining

So, while I know that you all were absolutely convinced that I should switch OBs – I wasn’t so sure.  The issue I had was mostly with one of the triage nurses at the practice, but I have my reasons for liking the doctors (one in particular), and medically, they were giving sound medical advice.  I didn’t want to start all over again with a new practice, knowing that I’d probably have very similar issues even with a new practice.  Besides, after I explained my frustrations to Dr. R. on Tuesday, there was a huge improvement in how things were being communicated to me.

But, it’s a moot point.  Because they’ve taken it out of my hands:

Dear Ms. Perky,

We regret to inform you that our practice will no longer be able to provide medical services to you.  We feel you need to find a physician with whom you will have a more communicative relationship.

Our practice is available for emergency medical care only until 12/20/09, which is 30 days from the date of this letter.

We suggest you place yourself in the care of another physician without delay.  You may wish to contact the State Medical Society at the number or website listed below for assistance with selecting a new physician.

[insert contact information here]

We have enclosed a medical records release form with this letter.  You may mail or fax the completed form to our office.  There will be no charge for the medical records transfer.  Your medical records will be available in our office for the period of time required by law.

Sincerely,

Drs. So and So, So and So, and So and So

 

You’d think this letter would have made my day.  After all, I wasn’t overly thrilled with them right now anyway, right?  But if they hadn’t fired me, I would have had time to wait until my perinatology appointment in less than two weeks before figuring out what to do about a new OB.  But I can’t be left without an OB for that long – I’m being followed by a home health agency, and they need a doctor to communicate to and to receive orders from.   But that hardly constitutes “emergency care” because it’s essentially maintenance care.

I don’t want to pick a new doctor without my perinatologists’ input, but if I call there, I won’t be able to talk to the doctors, I’ll be talking to the nurse who will just give me a name or two out of their files.  It is unlikely that I’ll be able to get an earlier appointment, since next week is Thanksgiving week, so I’m just going to have to wait.  But then – who do I tell the perinatologist to send my report to?  They can’t send it to my current OB because, again, that’s maintenance, not emergency care.

In an ideal world, I’d switch to a midwife – but I’m not a good candidate for a midwife.  So… I’m sort of stuck.

Finally, if I’d left on my own terms, I would have been able to come back for GYN visits after I delivered.  I no longer have that option.  I’ve had horrifically bad experiences with GYNs in the past and I had finally found a practice that I was comfortable with.

I know that the silver lining is that now I don’t have to agonize about whether to leave a practice that was rarely responsive and was completely inflexible in my care.  But it still smarts.  I hate it when people don’t like me.

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Don’t Want the Cup!

In August, we had the triplets’ speech/language assessed on the Mullen Scale.  It’s not perfect, but we knew that, at the very least, it would give us a point of comparison for the future.  This had been suggested by J-man’s developmental pediatrician because each of the triplets were showing significant delays in expressive language and also in receptive language skills – especially Sam.

When Sam was about a year old, he responded to his name consistently. If you said his name from across the room, he’d turn toward you, make an odd little grunting noise, and wait to see what you were going to do now that you had his attention.  This was a really positive sign.  But by his fifteen month check up, he wasn’t babbling, he wasn’t talking, and he had stopped responding to his name at all.  This kind of regression is often a huge red flag for ASD, but he had no other red flags.  He made eye contact, he was sociable, he was cuddly and loveable, he was engaged – but this language regression was… troubling.  I actually hadn’t been too alarmed until their pediatrician told me I should really consider having their early intervention team assess all of them, particularly Sam, for speech/language issues.  As it happened, we had already scheduled that assessment on the advice of their developmental therapist, but the fact that our normally very laid-back, very “let natural development happen when it happens” pediatrician felt like there was reason for further investigation did alarm me.

To qualify for early intervention through the county, a child has to display, at a minimum, a 25% delay in a developmental area.   My kids had been receiving various services through early intervention since they were six months old, so it was easy to get a speech therapist to come out to let us know what she thought.  Sure enough, all three qualified – without any calculating necessary.  None of them were babbling, none of them had any words, none of them understood even simple directions, and the girls were only occasionally (and possibly only by chance) responding to their names, and Sam wasn’t at all.  They started speech therapy a couple weeks after their assessment.

The girls grew by leaps and bounds, though still far behind their age level, but we continued to see Sam lagging behind.  He’s not dumb, that much is clear, but it was also clear that he was really struggling in the communication department.  Since we already have an excellent developmental pediatrician for J-man, at one of our appointments with him, we asked for a few minutes of his time to talk about the triplets, after we’d finished talking about J.  We explained where the triplets were developmentally in terms of overall milestones, and more specifically in terms of language development.  He recommended that we have all three of them evaluated using a standardized scale – not so much because the scale is so telling, but because it would provide a frame of reference – another data point, though obviously not the only data point.

In August, when they were 23 months old, we had the speech therapist evaluate them using the Mullen scale – again, not a perfect evaluation tool, but a reasonable data point.  The girls, not surprisingly, tested about 6-10 months behind their expressive and receptive language skills.  Behind, yes, but definitely making progress.  Sam’s evaluation was sobering.  His evaluation assessed him as having the expressive language skills of a 4 month old and the receptive language skills of an 11 month old.  We were alarmed, but continued to be cognizant of the fact that this seemed to be his only truly significant area of delay.

We increased Sam’s speech therapy from once per week to twice per week.  The developmental pediatrician gave us some advice, which boiled down to “You’re doing all the right things, here’s what else to look out for and other strategies you may need to consider down the road,” and he also agreed with us that this seemed to be essentially a language delay, and not part of a more broad developmental impairment.  He recommended continuing to remain vigilant with Sam’s speech therapy, and noted that because Sam has some motor planning issues we should consider PT and possibly OT if his fine motor skills didn’t improve with the work on motor planning.

And, so, we got him evaluated for PT services, all the while not sure if we really needed the PT, but the PT said that he absolutely could benefit from services because he was showing significant trouble in motor planning activities, which was (and is) inhibiting his ability to participate fully in activities with his siblings and friends.  (Mind you, the PT is through our county’s early intervention  – we’re not paying her, so she doesn’t have to tell us he needs PT just to keep her paycheck – she gets paid the same whether Sam needs services or not).  And so – we started PT for Sam.

And it is becoming more and more obvious that Sam’s got something else going on – but we’re not entirely sure what.  He’s always clutching things, won’t ever put down the collection of things that he carries under his left arm at all times.  He FLIPS out when we change his clothes – whether it’s from PJs to daytime clothes, or vice versa (today I figured out that he was much more willing to be changed out of his PJs if he’s on the floor, rather than the changing table – so maybe it’s a balance issue?  I don’t know).  We talked to Abby’s OT (man, we have a lot of therapists in our lives!) and she said that the things going on with Sam probably warrant further investigation/evaluation beyond the PT that he’s already getting.  So that will probably happen soon.

But, meanwhile, the speech therapy and PT continue – and he’s doing quite well.  He still doesn’t talk nearly as much nor nearly as clearly as the girls do (and even the girls are still behind age level – but growing exponentially), but he finally has words.  At last, he has ways to communicate with us at least for some things.  Certainly, we always know when he wants to eat.  And when he needs/wants a new diaper.  And when his sisters are stealing his toys (MINE!  MINE!)  He’s really growing, and we’re so proud of his progress – it’s taken a lot of work to get here.  No doubt , even without so much speech therapy, he would likely have caught up to his peers – but it really could have taken years (it still might – but at least we know he’s consistently making positive progress.

But nothing could have made me happier than this evening, while in the midst of a tantrum, Sam cried out and formed his first sentence (okay, it wasn’t a grammatically correct sentence, given that it was missing a subject – but he subject was implied, as you’ll soon see.  He had a plastic water bottle that had contained gummy candies, a bouncy ball, and stickers from a birthday party we went to last weekend.  He desperately wanted to get inside the container, so I opened it, but took the gummy candies away (they weren’t kosher, plus it was pretty close to their bed time).  He was unbelievably distraught over the loss of his prized possession, and he started to throw a tantrum, while desperately reaching for the gummies.  “Mine!  Mine!”  I tried to give him the stickers out of the bottle.  “No!”  I tried to give him the bottle.  And then?  He cried mournfully, he sobbed, and he pushed the cup away from him and cried: “Don’t Want The Cuuuuuuuuuuuuuuup!!!!”

My baby strung four words together in order to communicate exactly what he wanted – or didn’t want, in this case – and although it was in the midst of a tantrum (thankfully, unlike Abby and J, his tantrums never last long and are generally pretty tame), I was so proud of my little man.  I still am.

 

*sniff*

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Proud Owner

After much delay and more than enough drama, I am now the proud owner of a shiny new, double-lumen PICC line.  And boy is it running better!  If only it didn’t hurt like hell.  I don’t remember the first line hurting this much after putting it in, but I also was laying in a hospital bed drugged out for a week after it was put in, plus it was a smaller line.

The problem with the previous PICC line (aside from the fact that it just wasn’t working particularly well), was that my skin all around the site was reacting VERY badly to the adhesive on the stat-lock, around the tegaderm, and the tape (which I frequently had to use in order to keep the tegaderm from peeling off.  I’ve never had this severe a reaction to adhesive before, but this was (and still is – it’s going to take a while to heal) excruciating.  I am so glad that I stood my ground and insisted that it be changed.

And now?  Having spent the entire day at the hospital, I’m beat, so I’m going to bed early tonight.

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For the Record

I know I’m doing a lot of whining, and I apologize for that.  For the record, I am delighted to be pregnant.  I am extremely grateful for this opportunity to expand our family.  I have not lost sight of the fact that under all of the sickness is a miracle.  For all the ridiculousness, I love knowing that I’m growing a whole human.

Now if you’ll pardon me, I have a porcelain goddess to go pray to.

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So last Thursday, my OB’s office called me because for the three hundredth time my home health care company (Alere/Matria) had alerted their office to the fact that I wasn’t getting better… just worse.  The nurse (who hadn’t consulted with the OB) called me in a panic, couldn’t believe she hadn’t been told earlier (she had been – plus they get weekly reports from the home health company), and she demanded that I come in immediately to see the OB because they couldn’t do anything (change orders, etc.) until they saw me and ran some tests.  She had a 3pm appointment available, which gave me exactly enough time to send an email canceling my 3pm meeting, and get on my way to the OB’s office.

Of course, I was coming from work, so I looked pretty decent.  After all, at that point, only one person in the office knew I was pregnant (my manager), I do my best not to look like my miserable self when I’m at work.  My hair wasn’t a mess, I was wearing makeup… you know, I looked human(ish).  My OB walks in the room and says, “Well, I’m not worried about you at all! You look GREAT!”  That’s all fine and good, but don’t you want to know what’s going on?  I feel like … well, like “not great”.  I’m happy that you’re not worried about me, but hey, could I get a little help over here?  I was spilling ketones, losing weight, and hadn’t kept a single thing down (even my trusted SuperPretzels were failing me) in over a week.    Medically/Nutritionally compromised?  Maybe not.  But certainly my quality of life has taken a significant hit recently – and my ability to function at the bare minimum level I need to is waning.  As far as I’m concerned, that’s just as critical as whether my CBC is normal.

He wouldn’t discuss a steroid protocol with me (“We’ve never really done that here…”), he made a face at adding pyroxidine and Phenergan to my IV meds (but begrudgingly agreed to call in the Phenergan), and repeated over and over that “he’s not worried!”  He did check the heartbeat with a doppler to make sure baby’s still hangin’ out (heartbeat was present and accounted for), and he wasn’t going to draw labs until I insisted.  Meanwhile, I was standing right there when he asked his nurse to call in the IV Phenergan for me to the home health company.

The nurse never called with the order.  On Friday, my nurse at Alere called my OB’s office and played phone tag with them all day, while the OB nurse tried to verify with my OB whether she could authorize the change in medication orders, because he had written nothing in my chart about it.   Nothing.  The OB nurse failed to communicate the order to Alere before COB on Friday; as a result, I spent Saturday completely useless and miserable, praying for death.  Meanwhile, my OB’s office had also been alerted to the fact that my PICC line probably needs to be changed, but they said and did nothing about it.  (My OB *did* look at it from across the room and said, “It looks great!”… I’m sensing a theme here, how about you?).  My Alere nurse changed the PICC dressing on Friday and on Monday, and said the line really needs to be removed and replaced in a different location.  Alere reminded my OB’s office that they needed to look at it.  The phenergan finally got called in on Monday.

I talked with my OB’s nurse Monday and nearly lost it.  I was completely ticked that it took five days to call in a very simple order.  And her response?   “Well, you have to understand, I have emergency calls to take during the day.  I can’t waste my time sitting on hold.”  Never mind that every time the Alere nurse calls her, she sits on hold at least as long.  Never mind that I’ve given her explicit instructions on how to get through quickly to an Alere nurse.  “I have much more urgent matters to take care of.  I have to prioritize.”  Wait, what? I’m not important enough to bother with?  Hi!  I’m a paying customer.  I have a complex medical issue (or three) that I need assistance with.  I’m glad I’m not an emergency yet.  I’m trying to stay that way.  But if this PICC line doesn’t get changed, I will have an emergency that needs to be taken care of, and I’ve lost all confidence that the office could actually respond appropriately and within a timely manner to assist me in the case of a true emergency.

And today I had my regularly-scheduled appointment with one of the OB’s in the practice (a different one) and told him exactly how frustrated I was that an order that should have been called in on Thursday didn’t get taken care of until Monday.  And I explained that there’s a problem with the PICC, but he brushed me off at first and wouldn’t even look at it.  I pushed further and told him the specific issue – and though he still didn’t bother to look at it himself, he agreed that it needed to be moved.  He also agreed to change the dose on my IV Phenergan order.  Anyway, his nurse was supposed to take care of placing the new order with Alere for the Phenergan, and to coordinate with the hospital PICC Team to get me a new line ASAP.

Suffice it to say, neither was accomplished today.

The nurse called me an hour later and said, “The PICC Team said that since it’s infected, you have to go to the ER, get blood cultures drawn and if they’re negative in 72 hours, they can replace your PICC line.”  Um, but it’s not infected.  “Dr. R. said it was.”  Um, Dr. R. didn’t even look at it.  I tried explaining the issue to her, but she simply said, “Since Dr. R. said it was infected, you have to go to the ER.  If the ER doctor says it’s not infected, they can call me and I’ll call the PICC team.  I spent several useless hours in the ER only to be told, “but we don’t DO PICC lines!  [I knew that].  It’s clearly not infected, but obviously needs to come out.”  That was the extent of my ER visit, for which I had the privilege of paying a $35 copay, plus probably the balance since I haven’t met my deductible yet.  Good times.

Now it seems that maybe I’ll have a new PICC line tomorrow?  Oh, and that updated Phenergan order?  Didn’t happen today, despite the nurse’s assurances that it would be faxed today.  Yeah.

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Irony

I posted an U/S picture on facebook, and my law school roommate sent me a hilarious response.  He was shocked, to say the least.  I told him that he’d made me crack up and he said, “I wish I were as funny as you are fertile!”

I didn’t have the heart to tell him I’m not particularly fertile.  😉

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No time for a real update, but thought I’d post a few pictures of the kids:

 

So now you know (though a bunch of you already knew).    And now?  Back to my regularly scheduled (but not regularly attended) nap time.

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