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No. of Recommendations: 23
Hey all, and welcome to another CameraNerd Update.

On Monday, CN had another CT scan to look for differences in the brain between the ones a week or so prior when he was admitted to the hospital. The Neurosurgeon did not see any significant improvement OR degradation in condition, and CN's ability to get up/move around/walk around without headaches had not improved.

NS gave us 3 options.
1) Status quo - keep watching/waiting. That got a BIG FAT NO from CN and I.
2) Install a shunt.
3) Do a craniotomy so they could look at the Weird Brain Tissue and also install an external port to drain the excess cranial fluid.

We elected option 3, for 2 reasons.
a) There would be a biopsy on the tissue removed during the craniotomy so we'd get a diagnosis on WTF is going on in there.
b) There is a decent chance that the fluid pressure problem is temporary, and we thought it would be good to see if we can handle this on a temporary basis rather than jumping straight into installing a permanent medical device.

Surgery was yesterday at around noon or so. He went to ICU after surgery, which was expected. He was on a ventilator last night, which was also a strong likelihood.

What was *not* expected is that they have not yet been able to take him off the ventilator. He has not been oxygenated his blood well enough to be removed from the vent. This morning, they did a brachoscope (or something like that) to look at this windpipe/lungs and to look at some fluid in the lungs that they saw on the CT. They are doing a culture on the fluid and treating him with broad spectrum antibiotics in the meantime.

ICU nurse and Pulmonologist say it is not terribly unusual to see this type of thing in the ICU after a surgery. CN had been in the hospital for about 11 days at the time of the surgery, and was not feeling too great for the couple of days before the surgery, so he may have picked up something low-grade in the last few days.

CN's sister is an ICU nurse at a different hospital. She went to the ICU today and grilled the nurse for a while, and then pronounced to us that she believes they are handling everything correctly and proactively and doing a good job for CN. Hopefully that all proves out.

I've been tired, but the one thing about having your hubby sedated is that it is OK if you don't spend 12 hours a day at the hospital. I went for a while today, and went back late this afternoon. I am planning to work from home tomorrow and go over there a couple of times to take a break from work.

On a completely differentnote, CN's family had another blow this week. A very close friend of the family died unexpectedly in his sleep on Monday night. This man was an MD, and we found out about his death when my MIL called his house on Tuesday morning to ask to speak to him about CN's situation. We are all a mess right now over this as well.

That is all.
d
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I'm delighted that CN came through the surgery okay,and am hoping he'll perk right up with the addition of the antibiotics.

So sorry about his friend, though. That's rough.
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((((((((((((((((((((((DianaKalt))))))))))))))))))))))

I hope CameraNerd can be taken off the ventilator soon and that he completley recovers soon.

Ishtar
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My gosh, I'm really sorry to hear about your husband's friend.

If it's not too personal, do you belong to a church or anything like that? Our parish priest gave me some very pithy, practical advice during a difficult time - it's not all just "trust in the Lord..." etc etc.

I only ask because I was very discouraged during some medical stuff (mine and a family member's) and it helped. I'm sure there's chaplains/rabbis/whatever attached to your hospital.

Again, good luck and stay strong. You are doing great, advocating for DN and keeping things moving forward.

-Molly
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No, I don't belong to a church here. However, I did email a guy who was a minister in my hometown and who married Andy and I to let him know about all this stuff today. He is a really good guy and it is unfortunate he is not in KC. :o)

There are some chaplain types at the hospital that I have not availed myself of yet. I may do so at a later time. They also have social workers and counselors on staff as well that I could talk to.

Mostly I am using the internet for therapy right now. :D

d
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((((((((((dianakalt))))))))))
and to CN and family too. Sounds like y'all are going through some rough times.

for what little it's worth, I applaud your choices regarding the surgeries.

and I hope CN kicks the infection and is off the vent ASAP. That must be hard to watch.
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I've interacted with CN just a tiny bit on the boards.
I'm not at all an intrusive person so I've read and followed from afar up until now, but I'm in Olathe so if you need ANYTHING be sure and holler.
Ray
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I know that in my hospital, our chaplains are pretty nondenominational. And actually great people to talk to. We have a new one who is just as wicked funny as most of my at work friends. She fits in very well & has a history in social work. Maybe check out those at your hospital.

I am sorry to hear about the ventilator. I've had patients that were harder to wean off but were weaned off eventually & didn't suffer any damage. I have my fingers, toes & everything else I can cross crossed that he weans off soon. Please remember to take care of yourself as well during this very rough time. You both are in my thoughts.

I'm sorry to hear about the family friend as well. You guys are going to deserve to good karma after all of this.

Michele
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{{{{{{dianakalt & cameranerd}}}}}}

How exhausted you must be from never getting to feel like it's finally getting better. But it sounds like you're doing all the right things to get to the root of the problem. I hope they figure it out soon.

Hugs, strength, and whatever moments of serenity you can find,
Frydaze1
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Keep taking care of you. You can't be there for CN if you aren't ok yourself.

Speaking as someone who has had brain surgery - back scratches help. [Then again, I was 5. Softy, a teddy bear who flew all the way from St. Louis to Little Rock (Pine Bluff?) to bring me hugs from Grandma also helped.]
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Speaking as someone who has had brain surgery - back scratches help. [Then again, I was 5. Softy, a teddy bear who flew all the way from St. Louis to Little Rock (Pine Bluff?) to bring me hugs from Grandma also helped.]

I can't really get to his back at the moment, as he is sedated and lying on it, but I certainly will be giving him back scratches, or "scritching" as it's known in my house, as soon as I can.

He has a teddy bear too - I got him one the first couple days he was in the joint. :o)

d
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{{{Dianakalt and Cameranerd}}}}
Thinking of you and hoping everything will be ok!
Allie
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{{{{{{{{{dianakalt and CameraNerd}}}}}}}}}

Oh, honey. I will keep you both in my prayers.


--Booa
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