Tuesday, 13 February 2024

What's next?

At the time of this writing, Eli and D are at the hospital here in Regina, as he was admitted on Sunday evening due to another seizure. Hopefully I'll be driving them home today (Tuesday), but that's still up in the air.

The rest of the story: I drove out Sunday morning arriving at the house about 10 a.m. Eli and I watched the first curling semi-final together, at least most of it, while he also played on his phone and his mother and I visited. When it was over I changed over to the laptop to watch the remainder of the second game so he could have the television again. Before the draw was over, we decided to head to the park and he had fun playing in the snow on the equipment. The temperature was just below freezing, but the sun felt warm as D and I hung out on a bench nearby. Back at the house we all had a bit of lunch, before going to separate spaces for some alone time.

Eli was watching television, D was playing on her phone, and I read upstairs. About 3 p.m. I was back downstairs watching curling on both my phone and laptop (both finals overlapped). Eli was jumping on his mini-trampoline and moving back and forth to the couch for much of the afternoon. Around 4:30'ish D went to the kitchen to continue the preparations for dinner, while Eli played his game and I continued to watch curling. 

This is all to say that the day was quite normal, there were interactions between the three of us throughout the day, and Eli didn't indicate he wasn't feeling well at all. That all changed when I looked over at Eli on the couch and noticed that his head had suddenly turned to the left, but his eyes were tilted upward to the right. I hollered at him, and D came running from the kitchen. He was sitting up but completely unresponsive even when she rubbed his sternum. 

We immediately rushed him to the hospital; I drove while D called to say we were on the way in. They were ready for him, and by the time I had parked the car and met them in the ER (just a minute or two) there was a doctor and three nurses in attendance. In quick order blood was drawn, his temperature taken, pulse and heart monitor applied, and an IV for fluids started. He remained mostly unresponsive for about 40-45 minutes but did react to the needles.

On the last visit, the seizure was suggested to be the result of Strep and a fever. However, this time he had no fever or (at least to this point) no infection. A chest x-ray also indicated no pneumonia. The doctor consulted with a neuro at the children's hospital in Saskatoon and it was decided he needed to be transferred to Regina for a CT scan. This is when the hurry up and wait happened. The pediatric unit in Regina was full so the transfer could not occur until a bed was available. 

I went back to D's house and gathered up some items: Eli's favorite blankets, their meds, some clothing, and so forth, fed and watered the cats and grabbed my own bag. When I got back to the hospital about 8, there was still no timeframe for when the transfer would happen. We decided I'd head back to Regina for the night, assuming he'd be released sometime on Monday and I'd drive them home. I figured I'd need the rest for the second day of driving.

As it happened, it was 11 p.m. before they were loaded into the ambulance and on their way. D sent me a message "Eli is awake, enjoying the ambulance ride (it's now the best day ever again)" At 2:27 a.m. there was another message - I was finally asleep at this point - that they'd had an opening to do the CT.  The EEG (electroencephalogram) was scheduled for the morning. 

I arrived shortly after 9 a.m., and they were just taking him down for the EEG then. It took about an hour and then I stayed with the two of them in the peds unit until 1:30 when I think D had had enough of me being there. We still didn't know at the point whether they would be discharged but as the day continued it became less and less likely. We did get some results from the CT that suggested there was something unusual and it was likely Eli will need to have an MRI. 

I spoke with her around 6:30 p.m. and she was starting to get Eli ready for bed. Once he was asleep one of the night nurses let her have a shower and took her clothing to be washed. Shortly after 2 a.m. the phlebotomist woke them as the blood work from the transferring hospital had come back with results they found confusing. D said he did really well through the procedure; I have to assume he was drowsy and I'm sure that helped.

This morning, he had some time in the playroom playing Wii, and was scheduled to have a bath. One of the resident docs was in to say the results from the EEG were not in yet, but she expected they'd be consulting with the neuro in Saskatoon later in the afternoon. Until that consult occurs, they'll remain at the hospital here. 

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I'm home now with some not so good news and a little bit of good news. Eli's EEG did show signs of seizure activity. The two that we know of, he did not experience any shaking, however he has exhibited hand tremors occasionally. The doctor thinks it is possible these were minor seizures. The next time D sees it, she is to hold his hand tight - if it stops, it is a tremor, if it doesn't, it is a seizure. 

When I left the hospital the MRI was scheduled for Monday, and D and Eli would be released tomorrow and stay with us here in the city until then. They are starting him on the anti-seizure medication tonight and want to see how he reacts before he is released. Since I arrived home, there has been an update - they've cancelled an out-patient appointment and will do the MRI tomorrow morning. I expect that we'll stay here overnight, or possibly until Saturday and then I'll take them home.  I plan to stay with them for up to a week to allow D to get into a routine. 

We have some answers and not necessarily what we wanted to hear but there is a path ahead. 

10 comments:

  1. It sounds like he is in good hands with responsive care. You’re right -not the answers you wanted but at least you’re on the right path.

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  2. Geez, is this ever crappy news. I am very sorry that it has occurred and sorry that Eli and you and his mum have to go through it. However, the doctors and nurses and everyone medically involved look like they are ready to tackle whatever comes up. That they allowed D to shower and washed her clothes was very nice, very kind. Eli is clearly in good hands - at home and at the hospital.

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  3. The poor little guy. My daughter has seizures too. She has two adult sons, two grandbabies and works at a job she likes. They will find the right thing to stabilise your little guy.

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  4. Seizures are stressful and complicated. they are scary. I speak from being juvenile epileptic. Then in my 70's I was diagnosed with senior epilepsy. No seizures but you don't make any new memories. I'm completely controlled with meds. I hope that a good solution is found for Eli.

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  5. I'm so sorry this has happened. It's obvious he's getting excellent medical care, and I hope that the "path ahead" will be one that is easily managed. My thoughts and healing energy to him and to you and D.

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  6. “There is a path ahead.” Such an important statement. I hope you have all the answers soon. Thinking of you and your family!

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  7. I am sorry the little fellow is going through this. Hopefully they can get the proper medication to him. It is scary. I had seizures as a child and took meds to control. I now have a 1 year old gr.gr. nephew going through this. Prayers being sent up for a good solution.

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  8. I am so sorry that Eli and D are going through this (you as well). I hope that the medication works and that they find out what is causing the seizures.

    God bless.

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  9. Thinking of you and the family. The path ahead might be rocky with a few bumps in the road but everything will smooth out when they get things under control. Take care.❤️

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  10. So scary about Eli, I hope the seizure meds help. Good thing you were there for support.

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