Friday, March 14, 2014

A medical week

Monday 10th. I knew that Asher's neurologist wanted to get more blood tests done, so because we knew we would be in town today, we arranged to get those done today. Here she is playing in one of their cars as she waited. Rachel was with us on this trip and she did a great job of blowing bubbles for Asher which distracted her wonderfully. The major stress for Asher is really just having her arm held tight when they are looking for the vein.
The main reason for our visit today was Hannah. She had an appointment with the dentist. Unfortunately she gets too stressed with the local dental nurse, and so she was referred into town. She got to choose a toothbrush and the dentist used that to check her teeth. Their plan is to do some work under general anaesthetic (because of how stressed she gets) and on the day I was made to understand that there was quite a bit of work to do. On reading the report afterwards though, it seems there are only 3 or 4 teeth, and the issue is between the teeth. With them not even doing an x-ray to confirm the problem, I am feeling less sure about it all. We knew from the x-ray with the dental nurse last year that there was a problem between two teeth, but there may be absolutely no change with that over the last 6 months. Without an x-ray we don't really know exactly where we stand.
Wednesday 12th. Ruth and Hannah were playing a game and Hannah had gone to "bed". Ruth snuck inside and took this photo of her trough the glass door.
Unfortunately the afternoon ended up a rather stressful one with Asher having a seizure at 3pm and again at 3:30. The big concern with the seizures now is that she is not breathing and is going blue really quickly. Thankfully they are really short, lasting less than 3 minutes. I got quit a fright both times and called the ambulance both times. With the first one stopping so quickly we agreed we did not need them. After the 2nd one though we felt it would be safer for them to come. For those who are wondering - the first one was a Tonic Clonic (Grand Mal) which started with a scream - from sleeping. The 2nd was an Absence (where she just goes blank and does not move at all).
While I was getting my bag she even had another very short one in the paramedics arms (about 20 seconds Absence). We headed over to the medical centre and after chatting with the doc we decided we would head back home and wait and see how she did. Things were quiet for 2 hours but then at 6pm she had another (this time a Tonic - with her whole body arching backwards and limbs all very stiff). So this time everyone was in agreement that we needed to head to hospital, just to be safe. The concern is that they just keep coming as they did in January. She has not had more than one a day since the 20th January, even though she has not gone more than 2 weeks seizure free since the beginning of the year.
Thankfully she did not have any more overnight. I wondered afterwards if the good dose of oxygen on the trip in helped a bit.
Another thing I was really thankful for was that we got to spend the night in CAA (Child Acute Assessment) rather than moving to the general children's ward. This meant that the lovely nurse could offer to have Asher on a monitor through the night. The doctor had not felt it necessary (and so was happy for her to move to the general ward) but the nurse knew that it would help me get a better nights sleep (which it did). It was just a simple probe on her toe which monitors heart rate but more importantly with Asher - her oxygen saturation rate. If that dropped below 90 the alarm would go off. So if she had another absent seizure (which is totally quiet) and stopped breathing - the alarm would go off and we would be able to get oxygen for her.
We ended up not having the best of nights as she woke at 2am and struggled to get back to sleep for the next 2 hours. Eventually the nurse heard her and came in to ask if she could help with anything. She was happy with my suggestion of having Asher on the bed with me, so we could both get some sleep. The funny thing was that Brendon told me that Hezekiah woke up at about 2am and was upset because "Asher away". So he ended up getting into the bed with Brendon and he eventually fell asleep after 4am. So even though we were 100km apart - Brendon and I had a very similar night - awake from 2 to 4am and having a little one in the bed with us so we could all get some rest.
Thankfully Josie was able to pick up our car and drive through to fetch us after lunch. I was so thankful to another friend for watching the children through the morning and then Val watching them in the afternoon. It was a blessing that Brendon did not have to take any more time off work.
Friday 14th. A lovely busy garden this afternoon with all our children outside as well as Brooke and Logan over for a play.
When Hezekiah saw Asher getting a ride with Dad he joined in on the fun. With Asher riding along Brendon managed to do a lot of cleaning up around the garden and give me a break as well.

No comments: