Our Initial Descent

 

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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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I Never Want to Forget

I met my youngest nephew for the first time last Friday.  I was struck by how tiny he was.  It was strange because he was bigger than his next oldest brother, twice as big as Winter and three times bigger than Porter was.  In that moment, I realized how quickly we forget.  I couldn’t remember my babies being as tiny as he was let alone as tiny as they actually were at birth.  I need to start writing things down so I don’t forget.

P&W Never Forget

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Part 4: Porter Takes on a New City

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We arrived to CHOP in the afternoon and they got Porter all settled in to his new space.  I was hesitant about this move but knew that CHOP is the best.   At LVH, Porter was 8 minutes from home.  He had a private room.  They provided webcams so that I could log in and see him when I couldn’t be with him.  At CHOP he was in an open room with three other beds, an hour and twenty minutes from home and no webcams.  I was nervous because no one knew him or his background.

Porters Journey - part 3 4319

Within the first few days a speech therapist and the ENT team had been to see him.  We restarted PO feeds (by mouth).  The ENT doctor officially diagnosed him with reflux after seeing inflammation in his esophagus. He was prescribed Zantac.   They also said that some of his congested sounds could be from reflux.  We did a swallow study (his second one) and he did okay.  The reflux wasn’t happening right away.  He almost never spits up.  It must just be stomach acid coming up and irritating him.  We’ve known Porter has had reflux since the very beginning because he arches his back like crazy and occasionally holds his breath, though not for long periods.  We were hopeful the meds would help.  I think they did but just a little.  The speech therapist recommended starting Porter on Dr. Brown’s bottles (which we had already switched to from como tomo bottles) with an Ultra Preemie nipple.  That nipple doesn’t even exist on the market, it’s in the testing phase but Dr. Browns was kind enough to send us a bunch.

Porter was still on oxygen when he arrived and for the first few days at CHOP before we could wean him off.  Once he was weaned, he needed to pass a car seat test.  We borrowed an infant car seat from our neighbor because we, at the time, only had the large convertible kind that doesn’t exactly sit flat.  He had to stay in the car seat for 90 minutes with no monitor violations.  He failed.  We didn’t repeat the test until about a week before he was released.  They recommended we bring his convertible car seat and they would figure out a way to prop it up.  He fell asleep in his car seat and ended up staying in it much longer than the 90 minutes, so they let him sleep.

Porter stayed off of his sugar meds the first ten days he was at CHOP, which was longer than I expected.  His sugar levels were mostly right around 70, or slightly lower.  We tried to fast him to see how long he could go before they would drop and it didn’t last long at all.  CHOP is the mecca for congenital hyperinsulinism.  The endocrine team decided to restart his meds, against my wishes but they’re the very best so I had to go with it.  We needed to wait 5 days for the meds to take full effect and then they did a fast to see how long he could go before his sugars would drop below 70.  It took 8 hours…not good.  We had to increase his dose, wait another 5 days and repeat the fast.  It took 15 hours before his sugars fell again.  He was released later that day.

Porter remains on his sugar meds today, and may still be on them for a while.  Most children with this issue outgrow it before they turn 2 and the rest typically outgrow it by puberty.  We are super hopeful he will outgrow it even sooner than that.  We haven’t had to increase his dose at all, even though he’s growing like a weed.  This is a really good sign.

On an outpatient basis, Porter sees the endocrinology team at CHOP for his blood sugars, the ENT team for reflux/inflammation and a floppy airway and now the GI team for his reflux because it isn’t improving.  We’ve switched him to Prevacid, but he continues to be archy and almost always wants to be on his belly.  He will have a follow-up tomorrow with an eye doctor to make sure he isn’t effected by ROP (retinopathy of prematurity).  Both babies also receive physical therapy through our county’s early intervention team.  They have torticollis – or a neck tilt from their positioning in the womb, but it’s not severe and we’re working on it.

Porter has been through sooo much and I’m sure I forgot to mention quite a few things in his four part story.  We consider ourselves to be very lucky that he will likely not have any lasting issues from being born so early and so tiny.  And aside from when his reflux is bothering him, he’s a happy baby.  His smiles and giggles might just be the best things I’ve ever seen and heard.

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