Checking the place out…

Haven’t been here in a while, looking around, checking things out. Yep.  Everything is still here.

As hoped for, we are at a point where your medical crises are fewer and farther between.  This frees up some space in my head to think/worry about other things, which is nice.  We have made a couple of major changes/course corrections during the last couple of months, which I think I should document.

First – to hearing aid, or not to hearing aid?  That is the question.  At one point, we thought we were going to take the plunge; as it stands, we are waiting indefinitely until you are old enough to actually take a hearing test and raise your hand when you hear a sound (would this be around age 2?  I’m not sure).

Second – digestion.  I think we have this worked out (no pun intended) a little bit better.  We’re easing off the miralax, and ensuring you get 6 grams of fiber every day.  We give you a breakfast bar with 3 grams every morning, and try to give you high fiber snacks to get another gram or two in you every day, and then figure the last gram comes from your “regular” food.  You are drinking much less milk now, so that may have helped as well.  We’ll probably still need miralax periodically, but right now we’re giving it to you every few days, rather than every day, which is humongous progress.

Even though, at sixteen months old, you’re starting to get the will of a toddler, you are still a joy and a delight to me Miss M.  Always so full of smiles and humor.

PTSD

Is it possible that medical trauma, suffered by children, can cause post-traumatic stress disorder in their parents?  From my research on myself, a sample size of 1, I’d conclude that yes, it is possible.

My symptoms are as follows…I have trouble taking life “seriously”.  Deadline at work?  In general, this is a stressful concept.  In reality, I have a hard time getting myself to focus and produce.  My old mind game tricks don’t work anymore – really, after your daughter almost dies as a newborn, and suffers everything she did in her first year, it’s hard to convince yourself at any given moment that it matters if you finish 1 page or 3 pages of writing in a day.  So, more often than not, it’s 1.  My second symptom is that I take everyone else’s tragedies too hard.  Like, waking up in the middle of the night crying over a friend, whom we see a few times a year, who has cancer.  It’s not that I normally would not feel sadness and empathy.  But the pain of this news goes straight to my heart, skipping the filter of my brain, and fills me with hurt.  A random link this morning took me to a blog of a woman whose newborn daughter has another rare disease, and whose daughter has suffered 10x what Miss M has.  Tears, I know, are a normal reaction.  But I feel this pain in my heart, and it doesn’t go away when I move on to other things.

Have I mentioned that I have not slept without the assistance of a medication in over a month?  I remember the days when I slept easily.  It’s odd that now that Miss M’s medical future will likely be filled with predictable stability, for at least the next several years, I feel as disoriented as ever, just as much as I did when we were in the moment, dealing with it. 

And I feel like those moments are trapped inside me.  I’ve tried talking to others in person about some of those experiences.  But it makes me feel broken when I do.  I generally regret opening up, regret the way that I express my emotions and describe the events.  I’m told that talking about these events is how you heal.  Somehow, writing about them makes me feel more whole than talking about them.  Maybe because I can release the worry of judgement, here in my anonymous world.

Genetics Update

Miss M’s latest genetic test was negative, meaning they didn’t find a mutation in the specific gene they sequenced (GDF6), so they still have not found a genetic cause for her Klippel-Feil syndrome.  There is one other genetic mutation (GDF3) which has been associated with KFS, but clinical testing for this is not available in the US.  And, of course, there are likely many unknown genetic mutations which could lead to KFS.

Our only other option for genetic testing right now would be to do whole exome sequencing.  Since KFS is pretty well defined as her “diagnosis”, there is really no pressing need to do further genetic testing so we will probably just keep that in mind for some point in the future when the tests are better and less expensive, just for her own peace of mind.

The real cost of healthcare

So, I know that you are not a typical patient, Miss M. But, I’m thinking we could make a research study out of your healthcare bills. You just turned 14 months old, and your total medical expenses paid out to date is around $300k. The majority of that cost (I’d estimate 95%, without actually looking at the itemized lists) is composed of hospital bills.  The doctors receive very little.  We are sometimes astonished by how little they receive, and how many of their bills are denied by insurance. I really don’t know how they manage to make a living at it (I guess that explains the long hours…). Your dad calculated that the hospital charged $5 per mL for your saline IV transfusions during your most recent stays. If you need a non-metric reference – a mL is less than a 1/4 teaspoon. For saline.

I know there is a lot of discussion about health care costs in our country these days.  I don’t know enough about the economics and realities to understand our own hospital bills, let alone the entire nation’s hospital bills.  But from a personal perspective, I don’t feel that quality and value = expense.  Meaning, the most highly skilled and valued tasks/people/resources are not the ones who get the most money from our insurer. It’s the mundane things, like saline, that seem to cost ridiculous amounts.  Oh, I know, the saline doesn’t actually cost that much.  The hospital is charging us for something else, wrapped up in that saline bill.  Whether it is to pay for illegal immigrant’s hospital bills, or to pay lawsuit insurance, or maybe to even line their own pockets, is irrelevant.  It’s broken.  Smart people need to study this (I’m sure they are) and somehow get through the political rhetoric and media circus to get the general public to understand what is going on (because I don’t understand it).  I think it would take me 4+ years of multidisciplinary study to understand it.  But I wish I did, so that we could make certain we are being as economical as possible in your medical care.

As things are now, we feel that we don’t have a choice.  There is one children’s hospital in town.  All of the pediatric specialists in our town operate out of that hospital – there are no other options.  I’m sure the doctors feel the same pressure – if they want to work in our town, with children, they have to use the local children’s hospital, because “every” other pediatric doctor uses that hospital.  It would be difficult to coordinate care if they all worked at different hospitals.  My thoughts on this are likely also influenced by the fact that Miss M has not received the best care at this children’s hospital.  It’s staffed by young nurses, with minimal experience, who are more interested in texting than in looking after their patients.  Miss M has almost died twice under their (insanely expensive) care.

Time to add a new specialist

Your dad and I have been ignoring something for a few months.  Not really ignoring, but just not quite ready to take care of it.  But, it’s time.  Oh, if you’re reading this and are NOT already a parent, beware – you have no idea how often you will discuss your child’s bowl movements in the future.

So, Miss M has a chronic problem with constipation.  It began as soon as I stopped supplying breastmilk, when you were around 8 months old.  We tried cutting out everything but formula, prune juice, and pureed prunes, and you were still constipated.  So, reluctantly, we started giving you Miralax.  Through a lot of trial and error, we figured out that you needed a dose every 5-7 days.  Over the past months, we’ve seen the craziest things – I won’t give details here, but let’s just say you have a serious issue and it causes you a lot of pain and frustration at times, and it can go on for days.  And you don’t eat very well when you are constipated, and weight gain has always been an issue for you, so this is another serious side effect.

Now, you are drinking whole milk, eating a few more solids, and your constipation is even worse.  We’re still working through the trial and error process, to figure out what dose you need now, but I’m guessing we’re going to be giving you Miralax every day, or at least every other day.

And, we know it is time to start seeing a GI specialist.  Just to rule everything else out, see if the specialist has any other feeding or diet modifications that we might be able to implement to make things a little easier for you.  We haven’t heard of any GI abnormalities being associated with KFS, but who knows.  I think this is the last major organ system that we haven’t had checked by a specialist yet, so it is time.  As the nurse for our pediatrician said on the phone last week, when I called to talk with her about it, it’s probably a good idea to establish a relationship with the doctor, so when future problems come up, we have a baseline.  It’s funny, how we naturally assume we will have to see a GI specialist, at some point.

Your current specialist log, as of August 2012:

1. Craniofacial surgeon (every 6 months, between surgeries)
2. Neurosurgeon (every 6 months, between surgeries)
3. ENT (every 3 months)
4. Orthopedist (every 6 months)
5. Cardiologist (every year – yeah! used to be every 3 months)
6. Geneticist (every 6 months)
7. Craniofacial orthodontist (saw regularly during your first 5 months before your lip surgery, now we won’t see her again until you’re school-aged)
8. Opthamologist (saw once, no followup!)
9. Dentist (technically, everyone should see a dentist every 6 months; Miss M’s is part of her cleft team and specially trained to work with kids with craniofacial differences)
10. GI specialist (to be added – hopefully we won’t be on a regular follow up…)
11. Physical therapist (weekly)
12. Speech therapist (2x a month)

If you are counting, that is 16 specialist appointments during this coming year, not including therapy visits or standard well-checks at your pediatrician.  I haven’t counted the number of appointments you had during your first year, though I’m tempted to.  Just as a “Wow, we did that, that is where our year went”, kind of thing.  But, nah, I’m just going to keep looking forward.  Year Two, surgery-free, but lots of people still want to keep their eyes on you.

Compensation

Of course, I, as your mom, think you are an amazing baby.  But it stuns me sometimes how social you are; you are totally tuned in to people, everything they say, everything they do.  Your dad and I are social, but I wouldn’t say we have outgoing personalities.  My parents are also not particularly outgoing, or social.  Your Nana, however, is particularly social.  As was my paternal Granddad.  So, somewhere along the way, this personality trait skipped a generation or two, and I think might now be fully expressed in you.  

We were just at a big family reunion, lots of extended family meeting you for the first time, and I cannot tell you how many people just adored you and commented on your being the happiest, most smiling baby ever.  At first, new people, the loud voices, the crowd, made you nervous.  I think part of this was because only 5 weeks had passed since you were finally released from the hospital for the last time.  Strange people did not equal good things, during the very recent past.  So, you held back for a couple of days.  All of the great aunts and cousins were anxiously awaiting the moment when you felt comfortable enough for them to hold you, and once you realized this was just a big party, you shone.  And it was amazing to see how you just BLOOMED in the mix of the crowd.  Laughing, smiling, cruising around the room from person to person, just flirting and socializing with everyone.  Despite staying up way past your bedtime, multiple nights in a row, you never got cranky or fussy as your brother would have at this age.  And, when your Dad and I finally decided it was time to put you to bed, you were quiet and contemplative for the walk home.  Disappointed to leave, but content to be with us.

And all of this leads me to wonder…do people somehow develop innate compensations for their weaknesses?  Physically, you will always look different, and I wonder if somehow, since birth, you have developed an awareness of your physical differences, and have enhanced your social interaction, and just general overall adorableness, in order to compensate.  Biologically, it makes sense – had you been born 4000 years ago, your social personality might have helped ensure that people around you would help care for you (I’ve read something like this about babies, kittens, and puppies – they all have big eyes, chubby cheeks, stub noses, because adults think it is cute and will feel more attached and thus take care of them).  I wonder if somehow this works a little differently for you, because you know you are not a traditionally “cute” baby, you have amped up your outgoing personality to get the attention and love that you deserve. 

Regardless, the love and concern and care for you was obvious, when we were with family last week.  At moments like this, I truly feel lucky to be your mom, despite all of the heartache we’ve endured in your short life, and the heartache that is yet to come.

Early Intervention

I’ve written before about my strong belief in early intervention.  But, actually, today I’m talking about the formal program, Early Childhood Intervention.  Your Dad and I pay nothing for these services.  Depending on your family income and other factors, there is a “family cost share”, but that amount is covered by our medical insurance.  It is a “state and federally funded” program.  Like Medicaid, or similar social services programs.

At first, I thought maybe this wasn’t the place for us.  We could afford to pay for these services on our own, though obviously that money would come from either our retirement or college savings for the kids (sometimes I view money like the ball under the cup of a street magician – slide the three cups around really fast and guess which one has the ball – lift it up – no? – lets slide them around the table again and move the ball into a different cup).  And I have to say, being a perfectionist, I always wonder if there is something “better” out there.

I’ve spoken with people recently who paid for these services on their own, and in fact, we did meet with a specialist physical therapist who is a PhD and professor, in addition to running her own clinic, and did pay for her services (friend of your Nana and Papa’s).  For various reasons, our insurance did not pay much of that visit.  It’s amazing how freeing it is to obtain the services your child needs, rather than considering the cost/benefit of every visit.  Because, even though we could afford as many visits as she needed, we’d be considering the cost/benefit each and every time.  Adding to our stress.

Right now, Miss M, you receive both physical and speech therapy through these programs.  Physical therapy is once a week, speech therapy is twice a month.  You’ve been in physical therapy for about 7 months, but have just started in speech.  Results from physical therapy, so far, have been fantastic.  Even though you are getting very close to walking, you are still continuing to develop upper body strength because of the therapy.  So, even though you aren’t crawling, I continue to see you become more comfortable and stronger when on your hands and knees!  All of this work will pay off later when you have a strong core and upper body to support your fragile spine.

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