Thursday, April 18, 2013

The good news is that after a few bumpy days, Sarah is doing very well.  She is settling into a routine.  Now, all I have to do is start adding things like daily therapy into that routine so we can continue to make progress with her development.  

The bad news is that there is a chance that there will be a gap in coverage between our primary and out secondary insurance.  That is frustrating, because I asked many times and was reassured many times.  It is also a little scary.  A gap in coverage does not mean that she cannot go to the hospital or the doctor or anything like that- primary insurance still covers all of that.  It means that we will lose our nursing coverage.  I have been telling myself for about a week that life gets easier on the sixth, when because we lose our primary nursing coverage, we get our secondary nursing coverage- and that means we go from eight hours to sixteen hours.  If the secondary insurance does not kick in, it means we simply lose nursing altogether.  

I learned more about medicine than I ever wanted to know in the first few weeks of Sarah's life.  Since then, we have become comfortable with all kinds of things.  The truth is, there is a good chance that Lily knows more about trachs than most grown-ups.  Until this point, the most difficult things have been medical.  We have not had to battle (much) with insurance.  The coverage we have, through Josh's job, has been excellent.  And actually, that is the problem now.  Apparently if they had just denied our claim for nursing, instead of covering a few weeks, we would not be having these problems.  It turns out, if you have good insurance and make a salary, it is very difficult to get help even if there is clear need.  We are now learning how to navigate a system which is very complicated by design.  

I am following up with half a dozen people about half a dozen programs and waivers.  I am talking to three case managers, none of which are technically the right person to ask my questions, but all of whom know the system reasonably well.  It is all very confusing, but I am learning.  I am pretty sure we have nailed down the right waiver to get the right coverage in the long term.  

One of the people I spoke with today told me to, "call her and sound really desperate."  I have heard people getting all kinds of crazy advice to get coverage they need.  "Get a divorce.  You will qualify as a single parent."  "Only report your income."  Lie.  Just lie.  At least they didn't tell me to lie.  In fact, I am going to be desperate if coverage does not come through.  

Sarah's has a trach and is on a vent at night.  She has a little machine, called a pulse oximeter (pulse ox) which monitors her pulse and her o2 level.  The vent itself has a number of alarms for various problems.  There are a lot of alarms to let us know when things are going wrong.  But, because of the type of trach she has, we are told that it is possible that the trach could come out and no alarms would go off at all.  That is not a huge deal during the day.  She is always close to someone.  But at night, we need to sleep.  Without a night nurse, how will we sleep?  

Focus on the good.  Face the trouble, but focus on the good.  God will work this out in His own time.  I trust that He knows what he is doing.  I have placed her in his hands before.  He loves her.  He is in charge.  

So... the good.  Lily is very excited about Kindergarten this fall!  She hopes the that her teacher will teach about volcanoes and wells and dinosaurs and the planets.  I hope that her teacher has a good sense of humor.  

Sarah did have some drama the day after we got home.  Her O2 saturation was low and she had a slight fever.  Her primary care doctor sent us to to the emergency room.  We are still not sure what happened, but it resulted in a full day in the ER waiting for various specialists to discuss with each other whether or not Sarah could go home again.  She did.  She has been fine ever since.  

At home, I am primarily responsible for her therapy.  I am again grateful that I can be a stay-at-home mom. The county program is a "teaching" program.  They will come out once a week to show me what I should be doing with her every day.  They will reevaluate soon.  In the meantime, I am doing the best I can.  We are signing with her, and she has picked up a few signs- though at the moment I cannot tell the difference between Sarah calling me and Sarah blowing kisses.  She does both.  Lily is in on the fun of signing, so long as the fun includes "Baby Signing Time" movies.  It does.  Josh is very pleased because Sarah signs " Hi Daddy" and smiles at him, all the time.  She is also pretty consistent signing "more" and "all done."    

The new baby is healthy.  She is currently breech, but measurements today show that she still has room to flip.  We are hoping!  It is fun to watch her move.  And yes, we can watch not just feel it when she is moving.  Blessedly, she usually lets me alone at night.  Lily refuses to call her "new baby" anymore.  She is calling her Rebecca Grace, and corrects me if I call her anything else. We are reasonably confident that we have the best OB in the world.  He and his nurse are awesome.  I have said it before: if you have to pick between a good doctor and a good person for medical care, you know what you will pick- but it sure is nice to not have to pick!  

Elizabeth Cecilia, Sarah Katherine and Rebecca Grace.  I reserve the right to change my mind right up until the day she is baptized.  Especially if when I meet her she looks like a Julia. 

The world is full of wonderful people who have been offering help of all kinds.  I am beginning to meet more and more people in the community, which has been a great pleasure.  We expect to bring the whole family to Church together, in our parish, for the first time since January this weekend! 

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