We decided to drive in to the IWK the night before to avoid the 2.5 hour drive each way and split it up. It was a really great decision. Ava had a blast getting all the attention for herself with Meggie at Nanna's and she loved swimming and just playing in a new setting.
Of course the next day wasn't so great. We got to the hospital early and the nurse put some numbing cream on Ava's back. She got brought to the OR on the neurology unit and they began. I think the worst part was how hard the nurse held Ava down. They had to curl her in a ball and hold her down with all their strength. I guess if she moved it could be pretty bad. The first needle drew blood so we had to start all over. By the end of it everybody was sweating and had clearly underestimated the strength of a low toned 21 month old.
The only thing left to do was take her blood but that took three tries, 20 minutes and another wrestle to the bed using three hospital staff. All in all it sucked but hopefully we can rule out or get some answers. The three things tested at the hospital including glucose came back normal but the folate, amino acid and b-6 was shipped to Montana for testing and will be back in a month. Unfortunately they didn't get enough of the spinal fluid to save for later. I asked the neuro if she could find a bit to send off for a wild shot in the dark pick put she just laughed...I wasn't really joking. That is what all of it is anyway, random guessing with a bit of educational background to support it.
Ava was all smiles after an exhausted nap and she was happy and engaging with the neuro. The neuro kept looking at Ava and exclaiming with surprise just how far she's come since the last appointment. She commented on how straight she was sitting, her hand use, how 'with it' she seemed and engaging. She said she wouldn't be surprised if Ava was pulling to stand by the time our next appointment rolled along in three months.
The neuro left to go to her next appointment and said goodbye but a minute or so later I looked up to see her standing in the doorway and staring at Ava and observing her. I think Ava surprised her, maybe she had an opinion that is changing a bit now. I'm not sure. Just a feeling.
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It's a shame they didn't draw extra CSF! I really wish they'd done that with Bertrand. Doctors always think of tests that they want to have run after the fact, it should be standard! Grrr!
ReplyDeleteI hope Ava has recovered well and suffered no ill after effects! And I hope you are recovered from all the stress that happens to parents in those situations!
Love and hugs and fingers crossed!
Yeah, it was supposed to happen but she said that it was lucky they got what they did. Still I would rather go through an extra five minutes to draw the syringe than going through all of it again. There would probably be tests they could run but won't because of the pain and hassle.
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