November 16 - 39 days

Our dash to the finishing line (at least to the exit of the hospital) continues…

Reth and I are very much determined to get Chloe out and into a rehab center in the next week. We have called for a family meeting between all the teams of doctors. With so many people working on her, we need to be really efficient at this point. Efficiency was not on everyone’s minds today as we prepped Chloe for a final MRI and were all set to go until the doctor realized they didn’t put the order early enough to stop feeding her. So, after all the paperwork, screaming to get another IV in her, stopping her feeds for the past four hours and getting everyone together, our MRI is now rescheduled for Wednesday. Now that we have a couple days until the test can happen, neurology came in to have her EEG monitor placed back on her head so that they can see what’s happening over the next 24 hours. There is no threatening reason for the monitor to be put on, only to use it as an update and make sure no other seizures are happening. This means, though, that our room has changed again so that we are in a bed that can video monitor Chloe – we now reside in room 218.

Chloe looks better and better though. The doctors felt she didn’t need to be on the heart and respiratory monitors anymore so no more wires all over her chest and belly. This made it very easy for me to hold her this morning. OT came in and positioned her on my lap facing outward and I wrapped my arms around her elbows and legs to cradle her close. She slept peacefully in my arms and we enjoyed every minute.

Her feedings have also been progressing with the G-Tube. She is tolerating a continuous feed of pedialyte mixed with formula (50-50 mix) and has not shown any signs of discomfort.

Slowly we inch along. With the entrance to rehab in sight, a fire has been lit to really move all the final tests along. Chloe has proved that she is strong and now we just need to get her moving!!

Much love and thanks,

Michelle, Rethier, Olivia and Chloe