August 31, 2012

We've had an extremely tough and trying week. The surgery last Friday didn't go as smoothly as we had anticipated. What was supposed to be an hour and a half in the OR, turned into a lot longer. I left Ben as he went to sleep and it was 5 hours before we got to see him again. My stomach was in knots. As far as what needed to be done, the surgery was a success. However, Ben ended up on a ventilator for 24 hours because he came out of anesthesia an absolute mess. We were in the ICU for 2 nights and spent the majority of the time trying to calm him down while they were pumping him with versed, morphine and some other heavy duty pain medication.

Before the surgery Ben was hypersensitive, irritable and not sleeping well at night and it's only gotten worse. We're up about every two hours trying to calm him down. He's not tolerating his feeds, and the reflux is out of control (during the day and at night). We're at a loss. I've been talking to GI, the pediatrician, and the neurologist to try and figure out what we should do.

As we wait for some answers, all we can do is try to remain positive. I keep telling my little buddy that "we're gonna figure this out!"

August 20, 2012

I can't believe the summer is almost over. I honestly feel like it just started. We've had a pretty uneventful few months healthwise. Ben was off the oxygen completely somewhere around the 4th of July and has been chugging along with no major respiratory infections. He came off one of his neurological meds (Clobazam) the beginning of August, and he's become extremely hypersensitive and irritable. My happy-go-lucky little dude can smile one minute and then work himself into a frenzy the next! I do have dramatic children... they get that from their father (he'll tell you they're all me in that respect, but don't believe him - wink, wink). Anyway, I'm hoping this will subside, but not sure if it means yet another new drug we'll have to add to the mix. Although the seizures are still uncontrolled, I'm not ready to deal with the side effects of a new medication.

Ben is having one more (hopefully it's the last) surgery on Friday. He's having an adenoidectomy and orchiopexy. They may also put tubes in his ears if they see a need. He'll be staying in the ICU for at least one night. I'm thankful they've already decided to place him in Intensive Care given his low pain tolerance. I'm extremely nervous and anxious. The 3rd floor waiting area at Children's is not one of my favorite places! 

Putting all the health issues aside for now, I'd love to tell you how nice our summer was. My kiddos are definitely beach babes. We've been lucky enough to make it down the Cape a couple of times and Ben usually chills in his "thrown" made of sand while Jadyn "surfs" on her boogie board, builds some cool sandcastles, and collects jellyfish, shells and sand fleas. Sand fleas are so gross by the way.

I'm getting sad about school starting. This year Jadyn will be going into first grade and Ben will be starting pre-school in March. Say what?!? He's most likely going to be at one of the Collaborative Schools, unless our town's school evaluator thinks the system can provide all the therapists Ben needs (such a fat chance). One thing I am excited about is a weekly group Ben and I will be joining at the Perkins School for the Blind in September. It's going to be great for both of us. Ben will have an hour and a half of therapy with the TVIs (Teachers of the Visually Impaired) while I get to go to a whole separate room and chat with other parents.

I'll do my best to give an update after Ben's surgery!