Rob finally gave in and left the hospital. For the first time in two weeks he will be sleeping at home. I'm on night shift so I hope Charlie settles down and does some great sleeping. Rob and I have been a little confused about what characterizes a "storm" since anytime Charlie is awake he has increased heart rate, labored breathing, and is repetitively moving his arms up and down. The Dr. said that she does not consider it a storm until the heart rate goes to the 180's, the temp is increased and his BP goes up. Under this new classification he has only had two "storms" today. So this must just be how he is when he is not sleeping. Currently his HR is 168 and he sounds like he has the hiccups through his belly breathing. They gave the first dose of the beta-blocker (Labetalol) but it was a really low dose and doesn't seem to be doing much yet. For those of you that are interested in the specifics I have asked for a list of what he is currently taking because the list seems to get bigger daily.
Scheduled Meds
Labetalol 13 mg BID (control blood pressure)
NaCl q 4h (sodium chloride)
methadone 1 mg q12 (agitation/pain)
tranxene .94 mg q 8hr (slow the nervous system/seizures)
Clonidine .06mg q6 (control blood pressure)
Baclofen 1.5 mg BID (muscle relaxer)
Zantac 20 mg BID (stomach irritation)
Keppra 130mg BID (seizure)
phenobarbitol 30mg BID (seizure)
Claforan 800 mg q8 (antibiotic)
PRN- if needed
Lorazepam (ativan) 1 mg q4 (increased HR)
morphine .9 mg q2 (increased HR)
tylenol 135mg q4 (fever)
mortin (fever)
IV Ativan (seizure >3 min)
Quite a list for a 9 month old baby who only weighs 20lbs (He has gained 1 lb since we have been here)
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4 comments:
Hopefully some of those beta blockers will kick in and give that heart a rest. Angel, I hope the night went better; Rob, I hope the day goes better. Hang in there.
Dear Rob and Angel, What a list of medications, I hope they all do what they are supposed to do. My heart aches for such a sick little boy and his parents and Britain. Angel, let me know if there is anything I can do for you in addition to our prayers and thoughts. Love, Gary and Lisa Sharp
so thats about the amount of meds i take any given day... whats the big deal ;)
i hope the night went ok and the day goes better. love you guys.
Ahh---so many meds for such a sweet little guy. Hope the heart rate lowers,fevers subside, and Charlie can get some rest with this med list. Keeping you all continually in our thoughts and prayers. Love, Joan & Steve
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