Just as predicted Cooper’s storming got worse after surgery. With any increase in triggers (pain, discomfort, surgery etc) the storms can get worse. He had three big storms during the night shift that each required Ativan. They routinely gave Tylenol/Motrin for some pain control. The current storm has been going on for 1 ½ hours and didn’t respond to Ativan. He also has been put back on an oxygen blow-by to keep his oxygen levels up. We just changed his bedding again and did all of his routine care (weight, head measurments, belly measurement, vital signs) so when he calms down we don't have to wake him up. The rehab team just came in and the plan is to first give him some morphine to see if it stops the current storm. If so, it is presumably pain that is triggering the increased storms and we will be more aggressive in treating the pain. If not, they suspect it is the neurologic instability causing it and they will focus the Neurontin and tranxene. His propranalol (beta blocker) has been stopped because his blood pressure is too low. The nurses have not given it several times in the last couple days becuase of his blood pressure so they have decided to stop it altogether. He is scheduled to have X-rays of his head and chest to check placement of the shunt.
Grandpa Barlow checking out the bump (shunt tube) on his head from surgery
Just as predicted Cooper’s storming got worse after surgery. With any increase in triggers (pain, discomfort, surgery etc) the storms can get worse. He had three big storms during the night shift that each required Ativan. They routinely gave Tylenol/Motrin for some pain control. The current storm has been going on for 1 ½ hours and didn’t respond to Ativan. He also has been put back on an oxygen blow-by to keep his oxygen levels up. We just changed his bedding again and did all of his routine care (weight, head measurments, belly measurement, vital signs) so when he calms down we don't have to wake him up. The rehab team just came in and the plan is to first give him some morphine to see if it stops the current storm. If so, it is presumably pain that is triggering the increased storms and we will be more aggressive in treating the pain. If not, they suspect it is the neurologic instability causing it and they will focus the Neurontin and tranxene. His propranalol (beta blocker) has been stopped because his blood pressure is too low. The nurses have not given it several times in the last couple days becuase of his blood pressure so they have decided to stop it altogether. He is scheduled to have X-rays of his head and chest to check placement of the shunt.
10 comments:
My prayer is for Charlie and Mom to have a quiet, restful day. I know they are both worn out!
Hang on and keep the faith; the Lord is watching over your family.
G-ma C
Hi Guys,
I am so happy the surgery went well. I am hoping the storms and such since, just mean his body is adjusting, and will be all good in the end. You guys are my heroes!!!
Diet Coke is the nectar of the Gods... I guess I will add Coke to the list, just for Charlie.
Love,
Jamie
I love coke too. May the storms calm and the day be peaceful so little Charlie can continue to heal. Gosh - he is such a darling babe.
BTW - is it just me or is Dr. Brockmeyer kinda cute? haha! And did you know he took time off work to climb Mt. Everest? Can some people just slow down and not make the rest of us look like slackers??
I'm so sorry you had such a long night. I hope you both can get some rest today. Love and prayers.
I have a couple of questions and maybe they have already been answered but ...
Is the shunt a lifetime addition to Charlie? Is there any chance of it not staying put in the future? How do you know it is working in the future?
i know this is wearing on you. i wish i had something brilliant that would make you feel better, but i don't. it's a long road, and you are traveling it well... with walking sticks even ;) but it is long.
i'm sad char is feeling stormy. i think he'll do this for awhile until all the things are in place (implants, g-tube...) hopefully then we can move forward without stepping back too much...
a-i just noticed the morphine worked - so it is assumed that pain=storms? it that better than neurologic instability?
meg- I'm not sure if one is better than the other. I'll ask next time I see Terry Such-Niber.
anonymous-The picture is of Dr. Osguhorpe (ID) not Dr. Brockmeyer (neurosurgery). Dr. O is cute but he didn't climb Mt Everest. Dr. Brockmeyer doesn't stand still long enough to get a picture so I probably won't be able to provide one. Sorry.
Haha! I know Dr Brockmeyer as he operated on my cousin who had a tumor on his brain stem. And if I remember correctly he was younger and cuter than I had expected. I guess you would just consider a pediatric neurosurgen to be old like your Grandpa! I am sure you have seen plenty of med students and doctors up there who look too young to be doing what they are doing. I am just glad that PCH is so close and provide the care that Charlie needs. Here is to a good day!
I love that picture of Grandpa a Charlie. Dad is always so tender when it comes to kids.
Sounds like a not so good night. I pray things turn around and are much better soon. I love you Ang. My thoughts are always with you. You are such a inspiration to me. Hang in there.
Stefanie
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