A blog concerning the life of an extremely disabled child, his father and the poetry of that life
January 11, 2011
This is how we roll
Segev has very poor lung function. After having attended to Segev for 48 hours, sleeping altogether 8 hours, I rested for one hour and set off to do a series of six house calls, covering 300 kms of driving. Segev's mum "was feeling better" and so I let him sleep the night there. The call to rush over in the early hours, from my eldest, was expected. Next time and every time I will listen exclusively to my intuition as it has yet to fail me.
Every day it all gets written down. Here is yesterday and this morning:
06.15 375mg Paracetamol + Tamiflu 25cc
06.30 vomited
06.40 inhalation budicort, terbulin, aerovent, 23% saline
125mg paracetamol
07.10 39.3°C
07.25 water 30cc
07.35 38.5°C
08.50 37.5°C
09.05 Meds (lamotrigine, Keppra, Ospolot) 40cc
09.30 Vomited
10.00 38.1°C
10.30 Physiotherapy
Massage eucalyptus oil, Homeopathy 40cc
"R9"
37.3°C
11.20 Tea (plain black) 70cc
blood sugar: 136
12.05 Inhalation (meds)
Tea 50cc
12.30 Failed BM
13.10 Ketogenic meal
13.30 Vomited
38°C
Begin oxygen supplementation (sat. O² 88%) 4 liters
13.45 Physiotherapy R9
14.15 meds (AED's) + Tamiflu 20cc
14.45 250mg paracetamol 40cc
15.30 Tea 70cc
38.5°C
15.50 Inhalation + R9 Physiotherapy
16.10- Food
17.45
17.00 Failed BM
1710 37.7°C
18.50 Vomited
19.10 38.3°C
19.40 Water 70cc
19.55 Paracetamol 325 mg 30cc
20.00 inhalation (meds) + R9 Physiotherapy
21.00 38°C
21.30 Meds (AED) 40cc
22.30 Tamiflu 20cc
Physiotherapy
00.00- Suctioning (over 20 times) Physiotherapy (2x)
06.00 position change etc.
02.00 Inhalation
04.00 Paracetamol
07.20 Inhalation (meds) + physiotherapy
07.35 Meds + mucolit + Tamiflu + R9 100cc
08.30 Failed BM
38.9°C
Keytones=15
09.00 Food
09.15 Paracetamol
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(((hugs)) and thinking of you and Segev.
ReplyDeleteAs I follow you through your day all I can say is that it is a pure act of love! I send you my warmest regards and the most positive of intention.
ReplyDeleteYou are an amazing Dad.
ReplyDeleteYes, ditto Erika. Hang in there -- I send good wishes, prayers, strength and courage your way --
ReplyDelete