We are home but it has been anything but normal.
Jack hasn't been able to go back to school because he is still not strong enough and also because the school need training in using suction and giving rectal Peraldehyde for seizures. On top of that, the school are fighting to get nursing care for Jack so I think it is unlikely he will get back to school until then.
Holly is really struggling with the trauma over the last 5 weeks and I think she has a touch of depression. I am trying to get her to bed early, eat a bit healthier and take multivitamins. If that doesn't work then I need to take her to the doctor.
I was only home 8 hours and I had to give Jack both Midazolam and Peraldehyde to stop clusters of seizures. It was 1.40am when he finally went limp and I couldn't stop crying. There is only so much one person can take and having to do that for the first time was one of those moments. I know it's not the worst thing I have had to do but it's so invasive and I hate it.
I seem to cry at the drop of a hat at the moment, just can't keep it in and found myself breaking down on Monday morning when it took me an hour to get through to the Dr's surgery, after being cut off and having to listen to an annoying robotic voice telling me I was number 6 in the queue. When I finally got through to the pharmacist, I just fell apart and could hardly speak through my tears but finally managed to blurt out what I needed to tell her.
The school auxiliarys are coming into my house to give me a bit of a break but I can't leave them with Jack because they haven't had the training. I am also training up a lady who is now coming in to help get Jack up in the morning and put him to bed at night. The Crossroads carer, Marion, came in on Tuesday but again I was not able to leave her because she hasn't had training and just as well I didn't because Jack decided to put us through our paces again and he had to have both rescue meds again.
Poor Marion was thrown in the deep end just like me and it hasn't let up AT ALL!
Wednesday he was so agitated he only slept 4 hours and then started fitting at 5am so required both rescue meds again. I had been up most of the night with him so by then I was completely exhausted and so weepy I was turning into a gibbering wreck. Thankfully he was due in respite, where he was able to go because some of the carers on duty were given their training.
They had the same problem and he again only slept at 5am as he required rescue meds. They called a doctor at 2.20am and they suggested pain killers to calm him which didn't work. The doctor came back at 9.30am and he wasn't happy with Jack's heart rate which was very high and his oxygen levels weren't great either so they called an ambulance, which took him to the children's ward. I arrived 5 minutes before the ambulance and once again, I broke down.
So now we are back where we started 6 weeks ago, coping with the side effects of a new medicine. Hopefully it wont have such dire consequences as last time cos to be honest, I don't know how much more, we as a family, can take.
I am truly truly running on empty.
Jack hasn't been able to go back to school because he is still not strong enough and also because the school need training in using suction and giving rectal Peraldehyde for seizures. On top of that, the school are fighting to get nursing care for Jack so I think it is unlikely he will get back to school until then.
Holly is really struggling with the trauma over the last 5 weeks and I think she has a touch of depression. I am trying to get her to bed early, eat a bit healthier and take multivitamins. If that doesn't work then I need to take her to the doctor.
 |
| an apple a day, keeps the doctor away (source) |
I was only home 8 hours and I had to give Jack both Midazolam and Peraldehyde to stop clusters of seizures. It was 1.40am when he finally went limp and I couldn't stop crying. There is only so much one person can take and having to do that for the first time was one of those moments. I know it's not the worst thing I have had to do but it's so invasive and I hate it.
 |
| Jack in HDU, first day off the ventilator |
The school auxiliarys are coming into my house to give me a bit of a break but I can't leave them with Jack because they haven't had the training. I am also training up a lady who is now coming in to help get Jack up in the morning and put him to bed at night. The Crossroads carer, Marion, came in on Tuesday but again I was not able to leave her because she hasn't had training and just as well I didn't because Jack decided to put us through our paces again and he had to have both rescue meds again.
Poor Marion was thrown in the deep end just like me and it hasn't let up AT ALL!
Wednesday he was so agitated he only slept 4 hours and then started fitting at 5am so required both rescue meds again. I had been up most of the night with him so by then I was completely exhausted and so weepy I was turning into a gibbering wreck. Thankfully he was due in respite, where he was able to go because some of the carers on duty were given their training.
They had the same problem and he again only slept at 5am as he required rescue meds. They called a doctor at 2.20am and they suggested pain killers to calm him which didn't work. The doctor came back at 9.30am and he wasn't happy with Jack's heart rate which was very high and his oxygen levels weren't great either so they called an ambulance, which took him to the children's ward. I arrived 5 minutes before the ambulance and once again, I broke down.
 |
| Jack's teddy in ICU. He looks like I feel lol |
I am truly truly running on empty.
