A Whirlwind - Day 41

It has been a very long stretch of days after being switched to the regular Pediatric Unit. It has taken more than a few days to adjust to a new environment, a new staff of nurses and doctors, a new routine. We found ourselves a bit alone and isolated to not have a nurse in the room with us and feeling a bit left behind as we left our PICU family, but what I did find is that it pushed us to be much more proactive in what we needed and what we wanted for Chloe.

As we posted earlier, this move to the floor unit lit a fire in us to get out and move forward. We put a plan into action on Monday to make sure orders were put in for final tests and set a family meeting time for today with our whole team of doctors who have worked so hard on Chloe's care throughout our stay. We had an exhausting whirlwind of tests these past couple days - Chloe has gone through 24 hours of EEG monitoring to check for any seizures, a MRI to look at the pressure in her brain and check for any infarcts or changes, a vision and hearing test, and a check on her blood levels. It has been an extremely emotional few days as we sat bedside and prepared for everything. Amidst all these tests, Chloe has still been vomiting and we continue to find a feeding plan that works with her G-Tube and keeps her comfortable. She has shown a bit of discomfort the past couple nights, crying and groaning, as we still try to figure things out.

Now the update...We had our family meeting with our team this afternoon and most, not all, results are back.

Chloe's video EEG over a 24 hour period showed NO sign of seizures. The brain activity in some areas are still not as active as they should be but show some improvement since the beginning of our hospital stay. Neurologists feel that the medicine regimen is working well and that she is stable neurologically.

The MRI from earlier today shows that Chloe's ventricles are the same as, if not slightly larger than, her last scan. Unfortunately, this is not the news we had hoped for but this is a residual effect of her meningitis and the brain loss/damage that Chloe has suffered. There is still no way to determine what the loss indicates but we are still confident that we can help Chloe relearn her skills and retrain her brain to function in as many successful ways as possible. We will not allow a test to get us down and determine her future. Rather, we leave it to Chloe, the strength of her feisty spirit, and the support and love of all our family and friends to find absolute success!

We are still awaiting results from her vision test, and her hearing test has been postponed until tomorrow morning so we will let you know.

Her G-Tube is functioning well and we are slowly working our way to a nice continuous feed that seems to agree with Chloe's little belly.

What does all this lead to??? Discharge!! I say this with slight hesitation (otherwise it would have been in capital letters and the first thing you read) only because we are still waiting for some paperwork to go through from our insurance company and medical forms to be filled out. We also need to make sure that her feedings go well tonight. If all goes well, late tomorrow afternoon or Friday we will begin the next part of our adventure...Rehab! We have decided to move onto Blythedale in Westchester for Chloe's rehabilitation. It is far from home and we will have to adjust to a different routine and lifestyle but we are confident that this facility will give Chloe the best results of success and will teach us how to give her the best care when we eventually go home. In this decision making, we are going to try as much as possible to still keep Olivia true to her routine of school and home but it will be difficult for her as she realizes that we are farther away and will see us a bit less often. Olivia, too, has shown such amazing strength throughout this nightmare and we know she will continue to be a wonderful, supportive big sister. She has been Chloe's biggest fan - singing to her every night over the phone, entertaining Chloe's nurses and doctors and, of course, keeping mommy and daddy very happy and giving us lots of hugs and kisses everyday - the best medicine and therapy ever!!

We will keep you posted as we anticipate our move over the next day or so. We ask that you continue to keep us in your prayers as we continue to move forward. All of you have been beyond supportive in your emails, phone calls, letters and visits. We need your support more than ever as we tackle the next steps in our journey. We expect some bumps and setbacks but will continue to push through so that we can get our baby back home.

Much love and thanks,

Michelle, Rethier, Olivia and Chloe