Our Initial Descent

 

Porter 6Months  4568

After an appointment with Endocrinology yesterday, we have devised a plan to begin weaning Porter off of his sugar medicine.  It will be a slow descent from his current dose to zero meds.  We’re hoping it can be done in three weeks, if his sugars don’t stay high enough it could be a 6 week process.  And there’s always a chance that he’s not ready yet.  I’m hopeful.

For a full week, he’s getting a slightly lower dose than before and still two times a day.  Next week we will give him that lower dose but only once a day.  The third week we will stop the medicine altogether.  This is assuming his sugar levels stay above 70 (they may accept as low as 68 – though I was told that before they restarted his meds). The following Sunday he would be admitted to the hospital overnight for a 24 hour fasting test.  His body would need to maintain his sugar levels above 70 without being fed for a period of 24 hours.  They will give him some sort of water like substance to drink, but nothing with sugar in it.  No formula, no breastmilk, no veggies, no cereal.  Just water.  We all agree a fast of that length is pure torture, but it has to be done to be sure he really has outgrown this issue.  I’m hopeful that in less than 2 months we will officially be done with his two medicines.

I hate his sugar medicine.  I hate that he needs a diuretic along with it because it causes fluid retention.  I hate that our pharmacy once incorrectly compounded his diuretic to DOUBLE the dose he should’ve been getting.  I hate driving down to the city with two babes, making my husband leave early from work to help, for appointments that are supposed to start at 3pm and don’t end up starting until quarter after 4.  I hate getting home after 8pm because the appointments last so long.  So wouldn’t it be nice if this all worked out?  Fingers crossed.

p.s. Can you even believe my babies are 6 months old?!

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One thought on “Our Initial Descent

  1. Oh my gosh 6 months really?? I can imagine how awful it must be to have these challenges still. Glad to hear he’s doing well though! Fasting a 6 month old does sound like torture. Good luck with everything!

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