When I left the hospital last night to come home to Doug and Sawyer we were uncertain what we would be expecting with Cully. He had a rough evening with tears and screams. He was given a large amount of potassium over night and his tummy improved and his potassium level raised. In the morning even after the flood of potassium his levels dropped dangerously low again. The ACTH had been increased. Cully had settled down and did go back to a solid sleep that continued through much of today. He continued to not want to be touched. His potassium intake is now increased to a tremendously large volume and we will wait to see if the levels rise and hold..
Dougie and Sawyer visited today and after a little while I found Cully sitting up and laughing hysterically while they all played together. THIS WAS HUGE ! and only Dougie and Sawyer could pull this off...
The doctors seem to think that there is a chance the ACTH may be causing the potassium levels to drop. They feel taking Cully off the ACTH is unacceptable as we need to try to stop the seizures. If they determine the potassium levels to be due to the ACTH then they will give Cully a supplement for his potassium and continue the treatment. Levels are not increasing yet so they are going to continue to monitor him closely and figure this all out.
The ACTH drug will keep Cully's body from having a temperature until infections are deathly over running his body. We just can not tell if he is sick or if he is responding to reactions from his medications. Cully's medication list at this time.
Onfi
Vigabatrin
ACTH
Multivitamin
B6
Zantac
Omega 3 DHA
Taurine
Vitamin C
Melatonin
Potassium
Cully is OK right now.
Cully is OK right now.
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