A Double Lumen Hickman Line For Miya

Miya was admitted to Great Ormond Street Hospital on Sunday, the 24th of July, for the insertion of a Double Lumen Hickman Line on the following morning. This is a central line which links directly to Miya's blood supply. Blood can be taken from it, and medications injected into it.  It will also be used for Miya's weekly enzyme infusions. Venous access has been tricky as of late, and this will make our lives MUCH easier. 

Miya Munching A Banana After Coming Back From Surgery

Miya tolerated the procedure well. She was a little bit cranky after coming back from the recovery room (who wouldn't be). She didn't want anything to drink, but was happy to clutch a banana and shove it into her mouth at regular intervals. 

Miya did so well, she was discharged later the same day! She was difficult to contain in her bed after a couple of hours of being back from recovery, so she crawled up and down the halls of the ward.

It took us nearly two hours to get out of London and a further three once we were finally on the M3 Motorway.  

Miya doesn't seem to realize she has a new addition to her body. She hasn't pulled at it (yet) or even inspected it.  Her dressing was changed yesterday without incident and she also had her first bath with it in (with her chest wrapped in plastic wrap).

Miya And Mummy

 She hasn't really been herself since we came home, but she's no worse than I'd expected her to be. A little cranky from time to time, and a little clingy. She often pulls herself into my lap with a book or her Simba soft toy and sits for a while. It's nice. She's not usually a cuddly child. 

We're off to GOSH on Thursday night for our regular ERT on Friday morning.  I can't wait to see how the Hickman performs!! Looking forward to no canulas, no crying, no having to keep a 12 month old still or else the pressure in the canula sets off the machines.  

Hooray For Miya The Super Trooper!!