Last night was pretty miserable. Harper couldn't get comfortable. We tried several different pain medicines. She got a rash. She was itchy. We thought the rash was an allergic reaction to the medicine. She got benadryl. She got steroids. The medication cycle went on and on. She finally calmed down around 5am and just as she and I were starting to get some good REM sleep, the barrage of doctors, nurses and therapists started at 8am.
I try hard to advocate for my daughter without being too pushy or rude, but when operating on three hours sleep and trying to protect my girl from being woken up when she has finally gotten comfortable after major brain surgery, you better believe that I will be gritchy if I need to. Hell no you aren't about to do occupational therapy on her! Um, yes, you can wait a couple hours before trying to give her the bottle! And, I definitely don't think it's imperative that you change the trash and check the supplies in our room right this second! Back off people!
Finally my nurse took pity on me and hung this on the door. Thanks Steve - you rock!
After I shooed everyone away, Dave said the afternoon was pretty peaceful.
The doctors were threatening an NG tube (feeding tube in the nose) if Harper didn't eat anything today. I tried the bottle and yogurt with no success, but daddy swooped in to the rescue and got her to eat a jar of applesauce and about 3 ounces of milk. Whew! The NG tube has been taken off the table for now as long as she continues to eat. NG tubes are a huge part of feeding babies in the NICU and I will admit the thought of Harper having to get one again was just a little bit too reminiscent of that other traumatic time in her life.
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| Harper, L, Eliza, R, with their NG tubes in the NICU |
She's been resting pretty well all day with minimal pain medicine and is starting to open her eyes and be a little more lucid. The rash she had is back, along with a fever this time. They aren't sure if it is an infection so they are testing her blood and urine and we should know in the next couple of days if that is the culprit. In the meantime, they are treating it with tylenol and benadryl. I really hope an infection is not in our future. But, I'm not going to start freaking out about that yet - just one thing at a time.
Thankfully, I'm headed home to sleep in my soft bed. Dave thinks our "nook" in the room is pretty cozy, but I definitely beg to differ.
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| Dave in the "relaxing nook" |
I'll end again by saying no seizures - yipeee!
Julia had fever at various times during our surgery experience. You are right not to worry...even if it is an infection these doctors have been there done that and know how to treat them. Good for you shooing those people out! That drove me crazy too...a hospital is no place for rest. So glad the seizures are still gone!
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