Still waiting

It's shortly after 11am and we are still waiting for the notice to prepare Maia for surgery. Our pastor was just here and prayed over Maia again which was wonderful. The surgeons came in early this morning. The shunt will be placed on the left side again (the original location from Ukraine) due to concern about bacteria/infection at the site of the external drain which is on the right. I've begged asked if the pre-op team would be willing to shave Maia's head before surgery. I'm told it is unlikely, but the request will be passed on. Sounds as if they don't feel that it is part of their job - ugh! I wish that it wasn't necessary... it's taken 18 months to get our sweet girls hair this long. But, she has three shaved spots from the previous two surgeries and will have another after today. There is just no way that we can cover that many areas up. Might as well start from scratch. And given how tangled her hair is from over two weeks on her back plus how sensitive her scalp is, to try to comb or shave her hair when Maia is awake would be extremely difficult.

The infectious disease team gave me some reassurance this morning. They said we did the right things since Maia's shunt revision in February: bringing her in for evaluation repeatedly, monitoring her infection, trying to clean her scalp wounds. I've wondered if I should have been more aggressive about the low grade fever that she has run since then. The consultant (head MD) did say that because we catheterize Maia at home, she will always have bacteria in her urine. So, assuming that a UTI is the cause of a fever is not necessarily the best thing. Although there are risks associated with tapping her shunt, it may be appropriate at times. Antibiotics will continue for 24 hours after surgery, but nothing will be needed for long term therapy.

Maia slept well last night once she finally settled down (with some Ativan). She was out from about 10:15pm until 5:45am. Not a usual night's sleep for her, but enough so that she is pretty happy this morning. Thankful for that.

Will keep you posted as we hear anything. The plan is that she will come back to the ICU for at least another day to ensure she is stable post-operatively.

Thank you for your ongoing prayers and encouragement. They mean so much to us!