To those who read this that are part of the NYP Cornell staff on either side of the 6th floor, well, you can see how I drag myself around these days and I thank you for pulling me aside and letting me cry and vent. Thank you for feeding me when I refused to leave the floor. Thank you for all your words, for pulling the curtains closed when I needed a minute, for bringing candy to Olivia and introducing her to her first gumball!! The doctors and nurses who read this who have seen us through every visit and kept up with us outside the hospital, you have become part of our family and I can't tell you how much that means to have your support as you have seen Chloe and our family at our worst and maybe even sometimes at our best.
An update:
After another day and night of video EEG, it is clear that Chloe has been having numerous seizures; more than we ever expected. At rest, she didn't seem to exhibit any activity, though I am unsure about last night. Currently, the plan is to keep things as is with a few tweaks in her medicine. We are stopping Clobozam, one of her three anti-seizure meds, but increasing her sleep medicine at night. Hopefully this will give her body some peace and will allow her to sleep through the night. Though she has been quiet the past couple nights, she is still waking around midnight and 3AM.
The doctors and staff have made observations and have heard from us how exhausting everything has become. After speaking with the social worker this morning, we have some leads on getting some help at home. Though Chloe has gained some strength over the year, she still needs absolute total care and it has taken a toll on us, especially since we have lost our services of respite nursing of 5hrs/wk. Yes it does seem like 5 hours was nothing if you think about everything that needs to be done, but it was still something. Hopefully our leads will point us in the right direction to bring some peace into our home.
As far as next steps, we are still unsure. We are here at Cornell through the weekend to further observe her patterns. The next idea as far as treatment will be much more aggressive and we will have to discuss what the best option would be and how to go about monitoring Chloe. We have been talking with the team about steroid use or change of diet. Both options have great potential of side effects of irritability, change in appetite, digestive issues, etc. With either treatment, she will have to be monitored closely until we can understand how her body is reacting. At this point, we are unsure that I will be able to handle all of this at home, especially without a home nurse. It is difficult as I have been able to do everything possible for the past year and I have never not been at her side. Right now though, Reth and I know that we will be better parents if we advocate for her and get the help that we desperately need at this point in order to keep our own sanity and provide a safe and healthy home for not only Chloe but Olivia as well.
We will let you know through the weekend how things progress and again appreciate your positive thoughts and prayers.
Much love,
Michelle, Reth, Olivia and Chloe
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