Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Monday, April 25, 2011



More Hospital Detail

I am sorry Saturday's post was so curt. It is hard to type an update on the phone while dealing with all of the happenings in the Emergency Department. So here's the details.

Last Thursday the home health nurse came to change Frances' catheter tube. Unlike most short term catheters, Frances' goes into her bladder through an incision in her belly instead of up through her private parts. It goes through a hole in the belly and then through a hole in the bladder and then seals inside with a little balloon. On Thursday the nurse put in the wrong tube, one that was too small.

On Friday we checked with the docs about the wrong tube and they suggested, even requested, that the wrong tube be replaced with the right size one. So on Friday afternoon (which should have been a bad sign all by itself) the nurse came back about 4:30 to replace it. Once she removed the smaller one she couldn't get the larger one back in. Then she couldn't get the smaller one back in. She tried multiple times over several hours. During that time the lack of a catheter tube was presenting problems for us being wet everywhere.

After several hours of trying, talking with the doctors, her supervisors, etc. it was determined that we needed to try a different type, one with a firmer tip that might "push through" whatever the obstruction was. It was also past the nurses shift and she was trying to leave without any firm plans as to when the next nurse would be here to try and that was extremely upsetting to us. Finally a new nurse and a supervisor nurse were here and tried for several hours. When that didn't work we had to call for an ambulance.

Metro West 70 came with some paramedics that I didn't know but we got along great and they did a great job of getting us to the hospital smoothly and comfortably. We stayed in the Emergency Department for several hours while they determined what to do with us. Ultimately we were admitted to the ICU. Although Frances was stable there are very few areas in the hospital that can deal with a ventilator dependent patient and the other was full so ICU it was.

Upon being admitted to the ICU I had to fight very hard to stay by Frances' side. She cannot communicate without her computer (which we didn't have with us at that time) and I wasn't going to let them just "do their stuff" to her without my oversight and control. I know it was difficult for the staff to accept but it was going to happen that way no matter how much of a fit I had to raise. It's called being an advocate for your loved ones and you HAVE to do it in the hospital.

Once we were in, an ICU nurse got Frances a regular catheter inserted and she could finally, safely, relieve the pressure in her bladder. They apparently very recently had a patient die from a bladder exploding so they were very concerned about Frances. Once the catheter was in lots of pee came out which was very good.

We were finally getting settled down about the time for our 7am shift change. Our day nurse was Colin and he was awesome and we had a fairly non exciting morning. If you can call something going on every 30 minutes or so non exciting. We were originally scheduled for surgery in the Operating Room at 1:00pm and that slipped several times to 3:00pm. She was in and out in 15 minutes of surgery (about an hour over all out of the room) and woke up a bit later back in ICU. With some pushing and some help from a great Respiratory Therapist we were discharged about 7:30pm and riding in Metro West 68 (I think) back home, finally "comfortable" back in our own bed about 9:00pm.

I didn't sleep for about 44 hours or so and Jenny didn't either for most of that. Joe came and stayed with Frances overnight and we (Grandma and I) just sat at home alone for Easter while the girls were off at Grandparents and Jenny off with other family. Now here we are, Monday morning and it all seems like a blur.

4 Shared:

At Monday, April 25, 2011 9:39:00 AM, Blogger Cheryl Left a thought...

So glad to hear everything went okay. Thanks for the update.

 
At Monday, April 25, 2011 8:41:00 PM, Anonymous Anonymous Left a thought...

Oh, my goodness. I'm glad to know the full story, but so so sorry you had to go through this.

 
At Tuesday, April 26, 2011 7:36:00 AM, Anonymous Leanne from Pa. Left a thought...

Having worked in a hospital for many years and having a very sick husband in and out of the hospital I know only too well the frustration from both sides. I'm so glad Frances is home and maybe things are back to "normal" if you can call it that. I wish with all my heart you were not going through all this. My prayers are always with you.

 
At Wednesday, April 27, 2011 11:22:00 AM, Anonymous Anonymous Left a thought...

I've only skimmed your blog but I want to encourage you by telling how I see Jesus in a man who so tenderly cares for his precious family. I see the glory of God in this situation. You also remind me how I am honored to have God glorified in my afflictions as well. Love, in Him, Cynthia

 

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