Really, part deux

barbarafan

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5,303
I had exactly the same thought... one failure is unusual, 2 is downright strange... 3 is outside the envelope, so when things started deteriorating again, the Doc and I sat down with a whole team... the Pediatric Neurosurgeons Shunt team from the Stollery Children's hospital (they do more shunts than anybody), the Infectious Disease team, the Internal Medicine Team, and eventually decided it had to be biological - and they finally got a culture to grow and identified the little beastie.

Lee has a shunt infection, and the bugs are clogging up the works. They have had her on the right antibiotic for 10 days now (prophylactically, which is really fortunate) and so they are already winning the battle. (Conversely, that's why it was so hard to get a growth culture.) So now we have a new game plan: Tomorrow morning, they will remove all of the shunt plumbing and hook Lee up with an External Ventricular Drain (EVD) for the next 10-14 days, while they finish killing the bug. Then, when they're sure it's gone, she will get a brand-new sterile shunt system.

So 2 more surgeries, more Borg Hardware, and maybe we will finally be into the recovery leg of this journey.

Today is Day 355. It will be over a full year in Hospital for Lee before she gets out of ICU.

I have no right to ask for more, but please hold her in your thoughts tomorrow morning.

You are both in my thoughts. Thank God the experts 1)were able to figure out and prove the problem. 2)have the expertise to develop a protocol for removing the problems. Someone is watching over Lee and yourself and someday some little baby/babies will live because it now will be part of the checklist for shunt problems. Praying for everything to go smoothly.Take care of yourself pls.
 

skatfan

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8,292
So 2 more surgeries, more Borg Hardware, and maybe we will finally be into the recovery leg of this journey.

Today is Day 355. It will be over a full year in Hospital for Lee before she gets out of ICU.

I have no right to ask for more, but please hold her in your thoughts tomorrow morning.

Here's to getting those bugs out and onto the recovery. What a long journey for everyone!
 

Lacey

Well-Known Member
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12,358
I was very worried because things about Lee had been so silent for quite a while--never a good sign in my mind. So, it is almost a kind of relief to find Gerry and the team have figured things out. Sounds like, once they change the shunt and she can finish fighting off this infection, Lee will hopefully be so much better!
 

once_upon

If life gives you lemons, be an orange
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29,696
I hope and pray that all goes well with the external shunt process. As you know better than all of us, watch for minor changes as the level of drainage fluid bag can impact her neurological status. I only know from the caregiver standpoint how crucial the level of the drainage bag can impact status.
I pray for Lee every day. And for you and the kids. I think of you all often.
 

Simone411

To Boldly Explore Figure Skating Around The World
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18,949
@Gerry, I'm so thankful those little beastie bugs were finally discovered in that shunt. What an ordeal this has been, and keeping the prayers going for both you and Lee. I know it hasn't been easy for you, and over 365 days is a long time to be away from home.

It took a lot of patience when I had to stay in the hospital and NurseCare for a whole year. When I was finally able to use a wheelchair in August of 2012, I would wheel myself out onto the patio. It didn't really help when I would see the fence made of bars surrounding it. It made me just wish I could escape ... just to get out and be with my family. There would be days I would cry because I wanted to go home so bad. I couldn't leave yet because I couldn't walk. I was finally able to take few steps at a time with my walker which was in February. Without the physical therapy, I would have remained bedridden the rest of my life. My doctors thought I would never be able to walk again even using a walker, but I did walk with that walker and was able to go home by the end of April of 2012. It took a year for me to get well enough to go home, but with the help of my doctors, nurses, CNA's and family, and the caring people from FSU that stayed in touch here at the message board and with cards and mail, I was able to go home.

It really does make a difference because of the prayers and support especially from the people here at FSU. Gerry, that's why I admire you so much because of your strength and the love you have for Lee. You being there and your family being there, and those wonderful doctors and nurses is what's given Lee the strength to go through all of this. I know we'll all be celebrating when she does get well enough to go home. God bless you!
 

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