Chris's surgery

[8338]

Joel,

Thank you for the update and glad that she is doing much better. Please keep us updated.
Barb

[chickiet]

All,

Thanks for the kind thoughts and good wishes. I'm still an inpatient and my aceess is a wireless keyboard that connects thru the tv but not all that well...

My best guess is that i'll get released on Wed. The Columbus day holiday put a stop to any forwrd progress with getting the home health and meds transitioned so i can get out. I will be on IV antibiotics for another 2 weeks so we can't get a glitch in the system.

I will write more when i get home for sure - just wanted to let you know I a realy apreciate all you guys (& gals) - the support and caring means so much.

I am making decent progress with my walking and stairs. Gaining strength daily but still totally wiped out and no attention span...

More later,
Chris

[cindylee]

Chris..so very good to hear from you. And you will be making a lot of progress in the weeks ahead. It will be good to be home. Please get as much rest as you can in between the PT. I wish you well....Cindy

[drummer904]

You'll be good as new in no time Chris! Keep us posted!

[Day]

Wow...so much to go through....definitely in my prayers!
Day

[chickiet]

All,

Well, I finally made it home last Thursday - what we had expected to be about a 5 day stay turned into 16 days.

According to my NS, the procedures went as well as could have been anticipated - the shunt is in place in the syrinx. Intead of just stitiching the dura back together, he put a patch over the opening. This will allow for additional expansion in case the syrinx expands and/or the shunt stops working.

The detethering also went well from what I understand. I had to lay flat on my stomach for as long as possible after the procedure. I could only tolerate about 12 hours - it was so uncomfortable trying to have my arms straight out to the sides and then bent upward at a 90-degree angle. My shoulders hurt for a few days just from that mess.

So, things were on track and going well until about day 5. I had started PT and was making progress in that arena as well.

I had developed a urinary tract infection (typical for me after catheterization), and they had started some antibiotics for that (I think they'd already been started). But as the day progressed I began feeling very badly - severe headache, fever, elevated blood pressure, etc.

They did a CT scan and a lumbar puncture to check my spinal fluid. They didn't see (or grow) any bacteria, but my clinical findings and the other tests on the spinal fluid were consistent with meningitis. I became light sensitive and the headache worsened. I eventiually had a "decline in mental status" (according to the reports)

Even though there wasn't any bacteria visible, they decided to call in the infectious disease docs for a consult. They moved me back to ICU. I don't remember much, if anything from Sunday or Monday.

The final determination is that I had meningitis, but they can't conclude whether it was bacterial or chemical in nature. The shunt and/or the patch could have been enough of an irritant that it could have caused the meningitis.

Of course, to be on the safe side, the infectious disease docs recommended massive doses of antibiotics. So since Monday the 6th I've been on 3 different IV antibioitics. They're basically treating me for MRSA as wel as anything else that could be in there (just in case). It might be overkill since they never identified any bacteria, but it makes sense for them to be overcautious at this point. The possibility exists that there were some bacteria in there but just not detected - so they didn't want to take chances.

I then thought I'd get out last Tuesday (waiting for the Columbus Day holiday to pass in order to set up some home care stuff). But over that weekend my white blood cell count started going up - not as bad as it had the prior week, but still not going in the right direction. So that resulted in my staying a couple of extra days to monitor that level and also do more tests again. Fotunately this time the lab values started going back in the right direction and all of the other tests turned out negative.

I finally made it home on Thursday afternoon. Then we got a delivery of my at-home IV stuff, and a visit/ training session from home health.

I am now getting IV antibiotics at home through a PICC line that they inserted at the hospital. I get 3 different antibioitics daily, spaced over 6 infusions for a total of 5 hours per day. This will go on for another week (so 3 weeks total of antibiotics). In the meantime I will have lab work monitoried, etc, as these drugs are pretty powerful and can have some permanent side effects that aren't the greatest (kidney damage, hearing loss, etc).

I should be able to get my PT lined up next week and start on that outpatient process as well.

All in all, I am doing pretty well. I can't really tell how the surgery itself worked out - still on pretty high doses of steroids (I have a very long tapering down this time - until 11/2), plus there's the trauma of the surgery, etc. I am optimisitic and hope for at least no further deterioration.

My biggest issue now is the wear and tear this meningitis and my curent IV treatments are taking on me. I have no energy at all, so it is hard to focus and do much of anything.

I am very fortunate that my husband Dennis is so supportive and helpful. He has become quite the nurse (pretty good for an engineer!) and that is a huge relief to me. I am still easily confused and have a short attention span, so I'm glad he's been able to help keep me straight.

My parents are also visiting right now and they have also learned how to set up all the IVs, etc. Once again I'm fortunate that they are here to help with daily household stuff and also with the meds.

So - - that's the current status of my surgery. Lots of recovery ahead (as always), and of course slowed by the meningitis. I will be anxious to see what the final outcome is.

Again - thanks so much for the good wishes and support. It really means so much to know how much you guys all care - - and of course that you "get it."

Thanks again,
Chris

[paul55]

Hi Chris

Glad to hear you are doing ok and your present infection is under control. Wow, you have had a battle with this but from the way you are talking(Typing) sounds like you will do just fine. And I have this feeling the shunt is going to work for you. BTW, they closed me the exact same way as you ! Maybe standard procedure for this type of surgery? Just guessing...

I'm thinking about you!

Paul

[tc]

Dear Chris,
What a nightmare you have been through. Thank you for the update on your status. I truly hope that everything begins to improve for you from now on. I'll be praying.
Teresa

[chickiet]

Hey Paul,
That's pretty cool about the similarity in closure. You're probably right, that this is a typical / standard way to approach it. It is always good to hear that someone else has experienced something similar - and especially since I know you've had pretty good results to date.

Thanks,
chris

[cindylee]

Chris, so much has happened to you in so short a time. I am so glad to hear that you are at home and have your family helping you. That makes the healing go a lot better and quicker. I am sorry you got the infection. But I am glad that can treat it so aggressively. I wish you better days and know that I think of you...hugs, Cindy