Still Leaning on the Everlasting Arms

Eve has continued with her pattern of seizures each time the rescue medicine wears off. The only thing that has been holding them has been IV Lorazepam. This means we have no hope if getting home any time soon.
The Neurologist and Eve's Paediatrician came together to see her on Friday and together we agreed a plan. Eve's current medications would be kept as they were over the weekend with the exception of Ethosuximide which would be doubled, taking it to the maximum dose for her weight. If she was still fitting then they would swap the Clobozam and Clonazepam for Nitrazepam which is a longer acting benzodiazepine. However if this doesn't work either then the only option left is the ketogenic diet. The swap to Nitrazepam would go ahead whether the ethosuximide helped or not. But it was important to know whether or not it was helping as if not it could be dropped.

The downside to this plan was that it left us with huge plate spinning issues for Tuesday. I needed to be in Worcester st 9.30. I explained my predicament to the Drs and Lucia, who was sitting on the bed behind me piped up.

"Tina don't worry. Ill stay with Eve"
Wonderful wonderful girl. Lucia had already postponed going home for Christmas to come and help us and was now quite sincerely offering to postpone that further.
Words will never be enough to thank her.

So we started to think about possibly home Wednesday if this change worked.
Eve's pattern of seizures continued over the weekend and by Sunday it was obvious the Ethosuximide wasn't working. It was then we discovered that the Nitrazepam had not been written up, nor had it been ordered from pharmacy. So it was not going to be started first thing Monday.
Then the next spanner dropped in the works. The respite centre that had been booked for Jonathan and Rosie rang David on Sunday evening to say they were having to close. Apparently they had serious problems with their heating system and would be closed until further notice.
We are blessed with some wonderful carers. Iris, Debbie and Jackie all assured us that between them they would care for Rosie and Jonathan at home and get them to college and back. So with Lucia here with Eve and them at home we were still able to head off to Worcester on Monday afternoon to meet Joshua's needs. With the unexpected added bonus of David and I having a child free night. We picked Joshua up to have a meal together then dropped him back at school before heading back to the hotel.
It was a restless night as we had a call whilst at school to say Eve had needed IV Lorazepam again and back in the room we had no telephone signal. I spoke with the receptionist about our predicament and she was happy for the ward to have the direct dial number so if necessary we could be contacted through the night.
We woke before 6 and dozed till 7 then went over for breakfast. Amazingly we had telephone signal in the restaurant even though the previous evening there had been non. I texted Lucia who told me Eve was still sleeping and had been settled all night.
As we finished breakfast she texted again to say Eve was wake and smiling. Relief! Eve had been fitting as soon as she woke up most mornings. So this was an improvement. We walked back to the hotel to relax until time for me to go to school. Plugging the phones in to give them the best charge for the day I laid on the bed with my book. Ten minutes later another text. Again quite amazing as there had been no signal in the room the night before. Eve fitting again. IV lorazepam was being prepared.
I decided to head to school early so I had a reliable signal and could ring the ward. David agreed. We had already decided I would go to school on my own so David could relax before driving back. So we arranged that I would try to text him as I left school so he would be ready.
I managed to take the wrong turn off the roundabout and then need to do a Utirn. Which meant I was a few minutes longer but I got to school and rang the ward. Eve had as usual responded to the Lorazepam and was happily watching Mickey Mouse. They would ring if anything changed. Dr Crawford was due on the ward any minute but they would only ring if there was a change in agreed plan or if Eve began fitting again.
So I was able to turn my focus to Joshua. I had appointments with most of his subject teachers and was given a timetable and a map. This was going to be a magical mystery tour! I can read a real map fairly well. But this was a pens drawing of a floor plan and I was confused from the start as the upper floor did not match the lower and I wasn't sure which staircase matched. I eventually found my first allotted room. But no teacher, so I waited outside the door. Thankfully the mobility teacher came along soon after and asked who I was looking for. She then went off to check if I was in the right place. Apparently the English teacher had been taken ill, however the other English teacher was free and happy to talk.
I went from room to room speaking with staff who repeatedly told me what a lovely lad he was, what an able student he was, how he seriously lacked self confidence and belief in himself. Every teacher told me they expected him to do very well and several hoped he would take their subject at A level.
Joshua frequently tells me he wants to drop additional science. He tells me he is no good at it yet all three science teachers tell me he is predicted a B/C in GCSE. He just needs to believe in himself.
So I came away feeling very proud ofour son. We had been looking forward to the Christmas concert but because we desperately wanted to get back to Eve we asked permission to take Joshua early. This was given with no problem. So we packed the car with Joshua's belongings and headed back for David then on to Joshua's Church for lunch.
Before long we were on the way back to the hospital. Where so far Eve was happy and giggly watching her videos. Following the Lorazepam.
Lucia was heading back to Coventry after dinner that evening to pack for her delayed Christmas holiday back home on the Isle of Wight. So big hugs and goodbyes before she, David and Joshua headed off. Leaving me and Eve to have big cuddles.
Just before 7.30 eve began fitting again. My hope that Nitrazepam was going to be the answer started slipping away. IV lorazepam was given just after 8 and as always within 5 minutes she was smiling again. But IV lorazepam is not meant to be used as a regular drug. I was getting very worried again.
Wednesday morning the Paediatrician was going to contact the Neurologist again but as she was in clinic she emailed him. This meant that her reply came back via his secretary to hers without them actually speaking to one another. He suggested increasing the Nitrazepam a little. Meanwhile I had looked up the dose range which seemed to suggest the dose was too low. The new dose was also below the range I could find on the Internet from reliable sources.
The Peadiatrician came to see us late that evening. Not long after Eve had her second Lorazepam and I was struggling emotionally with my fears. Realising I was struggling to hold back the tears she sat with me and let me express my fears and tears. Thankfully she didn't offer me empty promises but admitted she could not give me assurance that Eve would be ok. She agreed that things were looking worrying and she was certainly getting concerned that we may not get home for Christmas. I told her that I was concerned that the dose of Nitrazepam was still too low. She was a little defensive but agreed she needed to talk again with the Neurologist.
Oddly her honesty and acknowledgement of my fears was more comforting than false reassurance that all would be well.
Eve settled to sleep and I managed to sleep between the comings and goings of a busy ward.
Thursday morning Eve opened her eyes and started to fit immediately. IV lorazepam administered and Eve settled. An uncomfortable exchange between me and the registrar who eventually admitted he really didn't understand what was going on and he felt the two consultants would have to make decisions. I thanked him for his honesty and to him I had far more respect once he admitted he didn't know.
Just four hours after her lorazepam Eve started to fit again. Advice was sought and Lorazepam brought in. Unfortunately the cannula had dislodged and a new one was needed. This proved very difficult as Eve was fitting quite vigorously. Thankfully the third attempt was successful and the lorazepam given. Eve didn't respond quite as well as usual and neither me not her nurse were convinced the seizure had stopped completely at first. Eve remained sleepy and less responsive for three hours before showing signs of seizure again. Very slight and intermittent but obvious to me and the nurses. The Registrar who had admitted his limitations this morning came back and tried to Fi e me and Eve's nurse a lecture on the way to know if it was a seizure or not. Me and Nurse looked at each other in total disbelief as he reiterated the myth that she was not jerking so probably wasn't fitting. But if she did start to fit again then IV lorazepam was ok to give again.
After half an hour of intermittent lip snaking facial twitches and building arm twitches we decided this needed treating so Nurse managed to get hold of the paediatrician who agreed IV lorazepam now but would endeavour to track down the neurologist as soon as possible.
It was early evening when she returned, having managed to talk with him by phone and discussed the options left. They did not want to start the ketogenic diet over Christmas in case of difficulties whilst people were away.
Nitrazepam could be increased and if seizure persisted paraldehyde could be tried.
If all this failed continuous Midazolam would be started. To bring everything under control then hopefully weaned off.
Not long after she left Eve started fitting again and was quite distressed. The decision was made to give paraldehyde. So far this has worked. Eve slept really soundly and is still asleep almost 12 hours later.
This morning I asked if her morning drugs could be given an hour earlier, before she woke. This was agreed to be a good idea.
Now we wait and see.
I am leaning on The Everlasting Arms and trusting That God has a purpose even in this.
Your prayers are appreciated.