While I was in Thailand a few years back the most popular phrase on t-shirts and souveniers was Same Same, But Different. That saying pretty much sums up this past week.
I’m happy to say that my little ladybug is finally tolerating full feeds through the G-Tube, it’s been a bit of a battle but everything seems to be on the up and up feeding wise.
The meds for her hypsarrythmia began late last week. They started off at a very low dose, every two days the dose was doubled with the hope that she would tolerate the maintenance amount. Well, in true princess style things couldn’t just run smoothly. This past weekend she was up to half strength and it was taking a huge toll on her body. All she wanted to do was sleep, and sleep, and sleep. I knew some sedation was to be expected but nothing could prepare me for watching my daughter lapse into such a deep sleep that she would begin to hold her breath. I guess they forgot the apnea section in the side effects hand-out. I thought I could handle everything thrown at me thus far – but when the nurse was trying to wake up my daughter and the only reaction was a little eyelash flicker, I couldn’t prevent my mind from going on a tangent of what could possibly be wrong. Did she have another adverse side effect to the Vigabtrin and was now in some sort of coma. Why isn’t she waking up? The only thing that kept me grounded was that her vitals were fairly stable again. Eventually – 4 hours later she began to wake up. The doctors decided to hold the dosage increase for a day just to monitor her. By Sunday morning she was somewhat like herself again, although she had a constant glaze over her eyes. She has since been on the full dose, isn’t as sleepy and hasn’t had another episode of apnea.
It was a good feeling, I was sure we would be out of the hospital within the next week or two. (Not without fighting to have an MRI first though)
Once again, it was a little bit short lived. My princess started having bad Stridor, which is a really high pitched raspy sound every time she inhaled. Although not a huge deal in the eyes of the doctor, for a mom it was rather concerning. Especially since it coincided with the start of the new medication. (may or may not be related) A swab was taken today to rule out Croup, and we are now in isolation which basically means the curtain is drawn to barricade our half of the room until the results come back in a few days.
On the plus side, I did get in touch with the genetics counsellor who assured me that the one test result I have been waiting for since July was completed and will take 1-2 weeks to be faxed from Winnipeg. đŸ™‚ So… perhaps some time this week that one mysterious piece that will tie everything together for my daughter will be found. Perhaps.
A little side note: I just spoke with my daughters nurse and for around 1 hour this evening she was cooing, looking around, and quite happy and content. I couldn’t have asked for any sweeter dreams tonight.
Little Ladybug Hugs 
That sure was a great ending to your update, hearing about the cooing and being content!
I think everything is scary when your child is hospitalized, there is no getting around it. I continue to keep you in my thoughts and prayers!
love how you describe her antics as her princess style! Love it!! As always, thinking of you and LB and really looking forward to seeing you on Saturday!