Just because I’m an EDS Mama with an adult daughter with Ehlers Danlos Syndrome doesn’t mean I’m not thinking about the “what if’s” surrounding the Covid-19 virus. My daughter has grown into being her own advocate, and yet as I remember all the years she was so ill and could not care for herself, all the times I never left her side during hospital stays, it has prompted some discussions at our house regarding preparation.
It is a reality that with EDS and POTS, this virus could very well land our children (adult or not) in the hospital and we will not be able to be by their side as we have in the past. At our house, we discussed that now is the time while you are healthy to update a medication and doctor list. When you’ve been all over the place for care, it’s important to have some of these details with you because one hospital’s records are not easily accessible by another and it wastes precious time while those records are retrieved.
It might also be important to make note of special intervention one might need because of certain conditions. For example, not every doctor is going to know that a POTS patient needs larger amounts of fluids to compensate for their condition. They may also not be aware that pain can escalate and mobility problems can occur with an EDS flare caused by any virus. It might be important to make note if you’ve required TPN in the past with a deterioration in your condition.
I’m not saying to walk in with pages of your demands.
A complete medication and doctor list is imperative and perhaps a couple of other added important notes would make you feel safe that the hospital was aware. This can be a scary time for any chronic patient. Some may be having flashbacks of what they went through in the past in hospitals. The fear of possibly not having one’s pain controlled again can cause sleepless nights just wondering if this virus will take you back to those days you’ve tried hard to forget. And EDS Mamas may experience anxious thoughts about the distance between them and their child if a hospital admission is required. Our children will always be our children no matter what their age.
I choose to place all of my children in God’s hands during this time. He loves them infinitely more than I could ever try. Psalm 121:2-3 says, “My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip – He who watches over you will not slumber.” This comforts me so much because even through the dark nights of the hospital, God will be with us. We will never be alone.
What discussions have you had at your house to prepare for a possible hospital admission? Let's share some comments so we can help one another be ready just in case.
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