7.23.2014

medical mumbo jumbo

It turns out I need to write.

It's no secret that I belong to a preemie mom support group.  Those girls have helped me so much the last three years.  And they continue to help me daily.  

This afternoon I posted this long, drawn out medical update on our boys in what I thought was this private forum.  Only it wasn't.  It was my private facebook page.  A couple caring friends and family members caught my post before I could delete it and expressed their support.  Which meant a lot to me.  

I felt embarrassed for having made that mistake.  I refrain from posting exact details about the kids on facebook, because not everyone wants to read about my struggles or my triumphs.  So I save that stuff for this blog, where you can seek it out if you wish.  When I made that accidental post on facebook, I realized I haven't written here in a while.  So here I am.  

We've been dealing with a lot of medical drama the last couple months.  As a matter of fact, we made two separate trips to the ER for each boy over the Fourth of July weekend.  Just because I know where your head is at, their shunts are fine.  

So Aiden - he's been sick for the last 3 months.  He's on his third sinus infection and third round of antibiotics in three months.  He's been vomiting (from the congestion we think) and he has this terrible cough.  His cough finally went away for around five days last week, but magically returned the morning after his last dose of antibiotics.  For a while, we thought the vomiting could be a food allergy, or his shunt, or even reflux.  We've tried to rule out those things and at this point we do feel it's from all the mucus he has building up in his sinuses.  Our pediatrician recommended removing his adenoids to help with these issues, but our ENT refuses.  He says that kids with clefts have a high risk of some sort of complication after adenoid removal, so he would like to try a prescribed nasal spray for the next three months instead.  Hopefully this works for our little guy because we hate to see him so sick.  

Next week, Aiden is scheduled for surgery to place tubes in his ears (he still has fluid in them every single time he is checked which is likely caused by his abnormal anatomy resulting from his cleft) so we could use some good thoughts if you have them.  On top of that we have to schedule him for a sleep study in the near future to rule out sleep apnea because of his hospitalization back in April when needed oxygen for 5 days.  So there you have it.  Two run on sentences and a boatload of specialists visits in our near future.  

On to Ryan.  Mr. Ryan had a seizure.  Actually, it was a cluster of seizures.  Probably 8-10 total from the moment we noticed until we got to hospital (via ambulance - my worst nightmare).  He was given some pretty strong meds just to stop the seizures.  This wasn't a huge surprise to us, since we're aware that children with hydrocephalus can experience seizures.  But it was scary nonetheless.  I'll never forget the way he struggled to talk when I got him from his nap that day.  He must have been seizing in his sleep.  I knew something was wrong immediately so I called out to Seamus.  He took Ryan from me and asked me to call an ambulance.  They came really quickly.  And then they took him.  Seamus rode with him, of course and Aiden and I followed in our car.  I won't bore you with the details, but 12 hours and a hospital transfer later we were discharged with instructions to see a neurologist.  Ryan did have a fever when he got to the hospital, but the doctors are hesitant to call it a febrile seizure since A) while fevers can cause seizures, repeated seizures can cause fevers as well and B) Ryan has a significant neurological history so we need to check all our bases.  

This morning Seamus took Ryan in for a routine EEG.  We're waiting for results but the report probably won't tell us much since the test only lasted 20 minutes.  It was, however, necessary in order to get our insurance to approve an overnight EEG where they will be checking if Ryan has silent seizures in his sleep.  Please cross all your fingers and all your toes.  We are hoping that this was just a one time thing.  But we're aware that it may not have been.  

At this point we have a million other things going on with pre-school evaluations and approvals that aren't going the way we had hoped and specialists with whom we are not happy.  But I'll save that for another day.  

I really don't like to complain.  I know that we are blessed and I don't just say that because it's something I think I should say.  I really feel it.  Despite all this bull**it going on we have had a great summer (check out my IG feed for proof!), but sometimes it just feels good to get everything out.  So thank you for listening. 

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