Wednesday, February 14, 2018

VEEG set up and 3 months old

Sunday 11th: Ruth giving Anastasia a work out this morning. Encouraging her to roll over. She is getting close now.
After church we didn't head back home but had lunch at our Pastor's home and then headed into town to drop Brendon and Asher at the hospital. They will spend the week in hospital with Asher having a VEEG (Video monitored EEG).
Brendon took these photos in the evening. Having her church bag of toys and her own DVDs was a big help in allowing her to feel settled in the room.

It was a nice spacious room with lovely pictures around the top. In the first one below you can see the camera in the top of the room. She will be hooked up to the EEG machine tomorrow morning and they will have video monitoring of her too.

The room has an on-suite toilet as she won't be able to move further away once she is set up. She will actually need to stay on the bed or on the floor (as pictured above) for her to stay in the view of the camera.
Ruth setting up a nice photo at home this evening.

This is the info I shared on Facebook explaining what's happening this week.
I should have explained the reason for this testing. Although we already know that Asher has a gene mutation that causes seizures (Dravet syndrome - an error in the sodium channel) her neurologist suggested these tests. Her last MRI was when she was 6 months old and all EEGs that she has had have been for 20 minutes and never while she is having a seizure.
So although her neurologist thinks it's unlikely (as we already have a reason for the seizures) he wants to check and see if there is a structural cause as well. In some cases there is one specific area of the brain that is the focal point where the seizures are coming from. In some of those cases, an operation can help remove the isolated "problem" area of the brain which then reduces the seizures.
As Asher does not have many drug options left to try, her doc wants to make sure we are not missing anything.
So the goal now is that Asher have seizures so that they can see what's happening in the brain. The plan is that on Tuesday morning she will miss her medication and they will control how much she gets from now, basically reducing it enough to get the seizure activity happening.
It's a scary thing to go through but God has given us His peace and blessed us with a very good neurologist who is very careful and caring. She is in good hands. Both physically and spiritually.
So specific prayer requests now that it's set up (and she is not trying to pull it all off) are:
That she would have enough seizures for them to see clearly what is happening in her brain through them.
That God would keep her safe through the seizures.
That her body doesn't get too comfortable in a seizure state (That she doesn't have too many or have a cluster that won't stop).
That the EEG connections don't need to much extra gell added, or that if they do, that Asher would cope with the work they need to do without knocking or pulling the cords.

Thank you all for your support and prayers through this all.

Monday 12th: The first step was to sedate Asher so that the technicians could put all the leads on.
She had to drink some medication and then had two injections in her legs. They explained that the liquid meds would help her to not remember the injections.
Her neurologist was there and wanted to show Brendon the MRI pictures that she had on the 1st, so a nurse held Asher for a bit.
They measure the head and mark the exact spots where the electrodes need to go.
Brendon took over holding her. The worst of this was the horrible smell of the glue.

They wrap her head up so that it's less tempting to fiddle with the leads. They are also wrapped together at the back and then go into the little machine in the black bag (which Brendon then had to carry around behind her whenever she moved around).
Her doc had said she would sleep till 1, but she ended up sleeping till after 3pm. She would wake up, want to play with something, and then just fall asleep again.
An answer to prayer was that she didn't get stressed with the stuff on her head when she did wake up. She did not try pull it off (or even fiddle with the bandage under her chin). We are so very thankful.
Her neurologist discussed the plan of how they would handle seizures. Specifically having a plan for longer seizures or really bad clusters. As they may even get her totally off her medication, they want to know they can also stop things if they get just too much. So he wanted a line put in, so that if hey have to, they can give intravenous medication quickly. Thankfully Asher was still asleep enough for them to do that without her resisting (or feeling any pain).
She didn't seem to stressed about the bandaged head or arm. What an answer to prayer.
Happily using her iPad with her left hand.
One of the biggest hassles with the line in her right hand is that she can't feed herself well, so Brendon is going to have to feed her most things.
This evening Hezekiah was doing his "home work" and Hannah always enjoys watching him. It was great to see him allow her to sit next to him to watch. And at one point he needed a bit of help, and she could help him out.
Tuesday 13th: I had an appointment in town this morning, so I headed to the hospital for a visit once I was done. Asher was so pleased to see me and I got such a long hug and cuddle with her.
I took this photo so that you could see the set up, from her head to the bag, and then the grey extension cord to the wall plug.
Her neurologist was pleased that I was coming in as he was then able to show me the pictures from the MRI as well. There is one small area of her brain that is showing some abnormalities. It was good to know that it is something that has been there all along, just not visible on the 6 month old MRI as her brain wasn't developed enough. They don't expect the area of variation to grow or spread.
I think we were all pleased that we had arranged this week of investigation. It will now be very interesting to know if the seizures are coming from that area or not.
I had such a good visit with them. I got some lunch from the cafeteria and just enjoyed visiting. The play room specialist also popped in. Brendon and Asher had gone to the play room as soon as it opened on Monday morning (before she was wired up) and the lady recognised them immediately (from the MRI visit). She knew that Asher liked balls, puzzles, sorting and stacking toys and this car ramp. Brendon was amazed and asked how she could remember so much as she must see hundreds of children. She said she remembers playing with Asher and enjoyed the time so much. It made a real impression on her.
The lady came every day to bring Asher some new toys. While I was there on Tuesday she was playing with Asher with a big ball. I would have loved to take a photo but I was chatting with her neurologist.
Brendon was also so thankful to the nursing staff. They often gave Brendon breaks to go shower or get coffee. They were really friendly and helped the week go well.
While I was there she had her first seizure (at around midday). She was on the chair (pictured behind her) and I was just trying to give her medication to her.
She was not wanting to take it (which is unusual) and then had a really big jerk. She climbed off the chair and then the seizure started. So I had her in my arms and she didn't fall. I then put her on the bed and tried to make sure I was out of the camera's way so that they could see how the seizure was affecting her physically.
She had a sleep afterwards but then ended up pacing a lot through the afternoon. It's horrible to watch her when this happens, but we were also really glad it did happen, so that the neurologist can see what's happening inside her brain when this happens.
Wednesday 14th: I love how Anakin cuddled up with Ruth this afternoon.

Asher's pacing didn't really improve through the evening and she had another seizure around midnight.
She slept till around 1:30 and then woke and was very uncomfortable. She was having big jerks and if she was home she would have been pacing. This continued till after 4am and then she finally fell asleep. She was woken at around 5:30 with a huge jerk though and then was pacing terribly. Brendon was eventually relieved when she had a seizure at 6:20, as she could then finally sleep and have a break from it all.
Brendon was exhausted from such a hard night.
This was my facebook update at this time:
Just to clarify - what Brendon has dealth with over the last 12 hours is something we were dealing with more and more regularly before we increased her medication (eventually doubling every dose). So although it's not unusual, it is so very hard. I became emotional just hearing Brendon discribe it (as I can clearly remember what it was like when I had to deal with it at home). It's heartbreaking to see her going through this but we are so very thankful that this "strange" stuff is happening while she is hooked up. It will help us to fully understand what is actually happening.
As a friend said: the data collection is invaluable, but it is so hard to go through. We are glad the doctors will be able to see exactly what's happening through these times. She is not talking and isn't interested in eating either. At least right now she is restful and lying watching movies.
Anastasia is 3 months old already. It's hard going through those first months with a baby who struggles with colic, but looking back now it's gone quickly.
Pulling herself forward. From all the exercises she does with Ruth. :-) Ruth would hold her hands and gently pull her up into a sitting position. Now, as soon as you hold both her hands, she starts pulling herself up. So she was just showing off for the photo shoot. :-)
Cutie pie.
Thankfully she has put on a bit more weight in the last 2 weeks (first two weeks of the month was hardly any) and she now weighs 5.3kg. She is getting taller and is now 60cm tall. She started off at 3.4kg and 52cm tall. So not rocketing up, but she is getting there. And as the Plunket nurse keeps saying to encourage me - don't just look at the scale - but look at how wonderfully she is developing.

No comments: