That night, July 6, was something I still can't get out of my mind. Probably never will but hopefully some of the associated fear will abate as time passes.
I share this not to share personal info but to warn against what COULD happen. This happened. This is our story. (Most of it anyway, minus some of the more personal information.)
Olivia came into the kitchen at 8:00pm to take her daily medicine while I was on the phone with a friend. She wasn't "herself." Just seemed confused. When I suggested she "take her medicine and go lay down" she literally took her medicine out of the kitchen. I had to remind her to take it as in swallow it. And then go lay down. She did and I walked out the front door to finish my phone call on the front steps. Liam and Macy were already asleep and Braeden was in the basement.
I finished my call about 30 minutes later and went to check on Olivia. I found her sprawled out on the floor of her room, the pillow pet and blanket that she was carrying laying by her. I tried to talk to her, to wake her, but it was hard. She finally awoke enough to sit up. She had her eyes almost all the way closed, grabbed the back of her head and began screaming/crying that her head hurt, kept saying over and over she wanted to go home. I told her she was home but she would cry and say that no, her home was far far away. She really had no idea where she was or what was going on. Shakingly I called 911 and got Braeden to come upstairs. I tried calling a good friend who lives close by to see if she or someone in their family could come stay with the kids while I went to the ER with Olivia. I couldn't get through twice and tried the friend I had just gotten off the phone with, who also didn't answer. I had Braeden try my first friend again on our other phone as I was about to get kids up and ready to go with us. He got through as my second friend began calling back on my phone. I took the one from Braeden and spoke with my friend who assured me someone would come to stay with the kids. Unbeknownst to me she was 45 min away with most of their family. She sent her 18 year old son over while they left to come back home. She also called a mutual friend to come to the hospital so I wouldn't be alone. Things I will never forget or know how to repay.
The ambulance arrived and they were very nonchalant. I don't think they thought much of a girl sitting up crying. They left her to get a stretcher. Then asked her to walk out to it in the living room. Finally when I tried getting her up to walk I think they saw how out of it she was and they stepped in to help her there. They got her strapped in as my friend's son arrived. I finished packing my bag (since it was already put together from our other endeavors), left, and actually beat the ambulance to the hospital. On the way my other friend I hadn't gotten a hold of called again and I explained what was happening. She and her daughter met us at the hospital.
In the ER the nurse and doctor did not take any of this seriously. I had given the EMTs the discharge packet from our stay in Chicago. When I arrived they talked to me about her having been in the hospital for headaches. I explained once again that no, she was there due to a vaccine which turned to cellulitis and that they had thought something else was going on but didn't know what.
By this time Olivia was at least answering questions and her eyes were open. BUT she was not. at. all. Olivia. Olivia has NO recollection of what transpired over the next 5-6 HOURS. She doesn't remember coming to the kitchen for her medicine, falling in her room, talking to me, and vaguely remembers the ambulance ride. She remembers nothing of her stay in our local hospital that night. She was out. of. it. She was acting as if she was drugged or drunk. She was singing, a song she knew well but said she didn't, that she said she had heard Macy singing. She was directing an invisible choir. Was speaking loudly and saying things she would NEVER say in real life (like how the nurse was not nice - she wasn't - and needed to work somewhere else!). My friends and I just kept looking at each other. We were laughing because it was too scary to do anything else.
During this time the first friend I spoke to arrived back in town and also came to the hospital. None of them could believe the change in Olivia. If we didn't see it for ourselves, I never would've believed it. I kept telling the staff that this was NOT her. After finally getting the whole story and finally seeing her walk - still incredibly unsteady, they started taking things a little more seriously. They did an EKG, took her for a CT scan, still nothing was found and we were told very quickly that they were transferring her back to Chicago. The nurse told us this and at first it seemed like the Dr wasn't even going to talk to us but after asking questions about why we were being transferred, etc he finally came in. They felt it was neurological and since she had just been there they felt Chicago was a better placement for diagnosis. It's what we all thought was best, though I dreaded the drive and arrangements again, but the way it was all done and done so quickly without discussion was just not the way to handle things. It was again related to Medicaid.
At 1 in the morning Olivia was transferred by ambulance back to Chicago.
I couldn't believe we were going back.
My first friend I had called had had her husband take over at my house with the sleeping kids while her son went home. She then went and took over for him while I packed a bag and went to the hospital in Chicago. She offered to stay at the house through that day if needed while we saw what was going on. I was so conflicted. It would be the first time Macy was not with me. I knew they wouldn't allow her there overnight. I had no choice. I was being torn in two, but Macy knew this friend well and was comfortable with her. The boys would be there at least part of the day. It was the best of a bad situation.
When I arrived in Chicago, Olivia had already gotten there and had spoken with the doctor. While she was more "with it" then she had been, she still was not herself. The Dr told me that Olivia had shared that she had had headaches all day. I had to again relay that she was not herself and had no idea what had happened. I let them know that she had had NO headaches this day, that this had been her best day, and then launch into the whole story of what happened beginning at 8pm. She could remember nothing after that time.
From the time I arrived at 2am until 6pm the next day, they did nothing but watch her. We were working with three teams of doctors from the "regular" team, the infectious disease team (they still weren't sure if something was going on related to our time in Haiti), and the neurology team. It wasn't until I asked late in the day for a plan that I was finally able to talk to the neurologist and find out where we go from here. When I had spoken to the ID Drs earlier they were not on the same page as I was. They still kept asking her things (she was still not herself and was speaking VERY slowly and not remembering things correctly) and asked if she took an extra dose of medicine, etc. They were not on board for doing more invasive tests such as the undone lumbar puncture etc because they thought she was ok. The neurologist didn't. He agreed something was happening and wanted to get answers. He was going to do an EEG, lumbar puncture, and MRI. I was elated. At last, hopefully, we would be getting somewhere.
is there a children's hospital near where you live. if there is you should take olivia there at children's they have to treat all the patients the same regardless of there insurance. if this is children's that is treating her like this you have the right to report them.
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What you should know about HIV
Other Awesome Blogs
• 50 million orphans in Africa
• Every 14 seconds a child is orphaned by AIDS
• 16,000,000 have been orphaned by AIDS
• Every week, AIDS claims as many lives as American fatalities in the Vietnam War
• 854 million people do not have enough to eat
• Malnutrition is associated with the deaths of 5 million children under the age of five
• Every 2 seconds an orphan dies from malnutrition
Hence the title of my blog
Little did I know that the road would be so rocky
Little did I know that the trip would take so long
Little did I know that my heart could hurt so much
Little did I know that God is never wrong
Little did I know that love could be so powerful
Little did I know that a dream so far could go
Little did I know that God would place the right ones
Little did I know that my heart, so large, could grow
Little did I know that a dream has it’s own timing
Little did I know that this day would finally come
Little did I know that four souls would be sent to guide me
Little did I know that they would choose to call me mom
But God knew all along and He had a plan to follow
God knew all along that my dream would soon come true
God knew all along that we five should be together
God knew all along that I’d share it all with you