Monday, September 27, 2010

Exhaustion

Olivia's legs did not improve since the incidents on Friday and Saturday. Sunday at lunch her legs became numb/asleep again and lasted about an hour, but then at dinner it started once again (all four times happened at the dining table???!!!) and this time did not go away. She could walk, with assistance only, and was scared. I just wanted to get to Monday morning when her neuro "people" would be in and could hopefully help and figure this out.

I checked on her a couple times during the night (I could not sleep!) and she called to me once to help her, yes help her, walk to the bathroom. Scary to see your 9 year old barely able to walk, undress, or dress herself.

BUT this morning when I heard her call for me to help her again at 5:30, she couldn't move most of her body, not just her legs. She couldn't walk even assisted and I literally carried her to the bathroom, had to help her undress to go, and she was scared, which scared me more. This is when being single is hardest. I called one friend, Liam's day care provider, to see if she was up (almost 6) not knowing she turns her cell off at night. Then called another friend who I know has a baby :) and she answered. I explained what was going on and asked if I could drop off the boys to take Olivia to ER. I didn't want to wait any longer. She said of course, to bring them in PJs, and not to worry she'd handle it. I woke the boys, Braeden was my big helper and understood right away what was going on. We got out the door pretty quickly, dropped the boys, and went to ER.

We got checked in and sorted out and they ordered blood work to test for Potassium levels and a CAT scan. I figured what they were checking for in the CAT scan, but didn't want to ask in front of Olivia, and didn't really want to voice it aloud myself anyway. The tests came back showing everything was fine (with those tests). They could obviously see we weren't "making this up" as I had to carry her across the ER to use the bathroom, but there was nothing more they felt they could do and wanted us to call Olivia's docs in Chicago.

We arrived there around 6:30 and left at about 8:30am. On the way home we drove through for breakfast and made calls to Chicago doctors. By nine it was decided that I was to bring Olivia to University of Chicago's ER. OK. The feeling was that her neuro doc could give her IV seizure meds and if there was a positive reaction they'd know it was due to seizure activity. There was also the possibility of her being admitted and doing a nighttime EEG. But they definitely wanted her at the ER.

We left home a little after 9, stopped for gas, and made it there by 10:30am.

We were admitted pretty quickly... to sit and wait... They ran blood tests eventually, but never came to tell us what for or if they received results. I had brought the results from our local hospital as well as the CD/DVD of the CAT scan, both of those sat on the table and never were looked at. The doctor told me he spoke with neuro 4 times to come talk to us and finally about 3 pm someone did. 3 pm! She asked all the questions I had already told the neuro people that morning, checked out Olivia who by then was doing well but told her that when she stood her legs felt somewhat numb again, and left to "confer" and make a plan. Finally at 5, with no food and starving, someone who must have been "high up" in neurology along with the one who spoke with us and two others, came to talk to me.

He said he didn't know why our doctor had reduced Olivia's Keppra last spring/summer because he had never heard of that causing low neutrophil levels which is why her HIV docs wanted it reduced. They said it was that med or one of her HIV meds and I got the feeling they wanted that one and not theirs "tested". I had not been happy with that decision. But they had reduced it and added Topomax. I was now being told that it shouldn't have been reduced, that this person who seemed very knowledgeable didn't know of any reports stating Keppra could cause that, that she could easily go up to 500mg per dose for her size when she is now getting 250 and 375 mg, and that he would have added a different med other than Topomax. He continued to say that since she was doing well they were going to send us home, he was going to talk to our neuro doc and our infectious disease docs the next day and get things figured out. Sounded to me as though he wants the Keppra increased and feels this is seizure related.

There was no IV of seizure meds, no EEG, and all this to my opinion could have been done the first couple hours we were there. :(

BUT the kicker! Maybe five minutes after we left, as we were getting food (SO HUNGRY!), Olivia freaked out that her legs were starting again. My thought - this was the first time she has SAT all day, she's been laying in a bed all day and is now sitting. She was SITTING each time. Only thing I can relate it to. By the time we picked up Braeden and got home to get ready for bed she could barely undress/dress herself. I left Liam at my friend's for the night in case I needed to go somewhere quickly, but figured Braeden would be worried and needed to see us, and he would be easier to help if I needed to take Olivia somewhere quickly.

So now she sleeps. I am awake worried once again, thinking I hear her call or fall or ... I wrote lesson plans for tomorrow and emailed them to a friend. I called in a sub. I made Braeden's school lunch. I'm praying for sleep, for REST, for healing... for answers.

6 comments:

Megan said...

Oh Lisa. Just praying the Olivia's body will heal and praying for peace for your sweet mama heart. Hang in there! YOU are doing a great job! Wish we lived closer so we could help.

So sorry. Praying for healing, for wisdom for the doctors, rest and peace for all of you. Praying for supernatural amounts of strength and energy for you, Lisa.

Much love,
Amy

Deb said...

Please keep us posted. I will pray for Olivia today. For healing and for answers.
Love,
deb

Poor Olivia!! Poor mom too!! Praying for healing for Olivia, wisdom for the doctors and strength for all of you!! Wish there was something more i could do.

Shawny said...

I am so sorry to hear this Lisa! I sure hope they find some answers soon. Hang in there mama!
Shawny

Christie said...

I'm a little behind on blogs today...will check to see if there's an update.

Praying for answers and peace for all of you.

Love,
Christie

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I am a single mom to four amazing kids; each of whom just happen to have been adopted. The first three were adopted through foster care, and we just completed an international adoption from Haiti. Our family has grown through adoption and I am all the more blessed to know each of my children. I worship a mighty God, teach Special Ed, love bargains, and am inspired by Pinterest... come along with us for the ride!


Olivia - 14

Olivia - 14

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