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.

Saturday, April 30, 2011

Pray For Alex

Our world was rocked this morning. But not nearly so as Alex's family Alex's cancer has returned in the form of leukemia. Please pray for him and his family as this hits very hard.

Alex is my 6 year old Sarah's "husband." They declared to us several years ago that they got married and there are posts about their honeymoon to Sacramento previously on the blog here. They are also one of the few families that we have unlimited trust with our kiddos. Last fall when Frances and I couldn't go to Candlelighter's Family Camp we sent our kidds and our van with their family. They mean a lot to us.


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.


Saturday, April 23, 2011

In The Hospital

After a rough afternoon and evening frances was taken via ambulance to the emergency department and we are now waiting for an admit to ICU or CCU.

Ok. We are in the ICU. I hate having to fight with nurses just to get her care. 24 hrs since I've slept now and am tired. Don't know when surgery will be.


Tuesday, April 05, 2011

"They are bumps, not boobs..."

Backing up a bit. There are a few things that I don't think I am ready for, and taking over the mommy role in the area of maturing ladies is one of them. Weeks ago Rebekah started showing "bumps." Ok, truth be told is was probably months ago but I have been blind to them, like an Ostrich with his head in the sand I am sure. Weeks ago "things" became prevalent enough that we needed to do something.

Back then I posted a small post on my face book whining about it and seeking advice. I got some great advice then but was able to put it out of my mind when we found some "bras" in the "to grow into" bin of clothes. It took a lot of training (pardon the pun) to get Rebekah to understand that the fact that she was wearing a bra was not something she needed to share with every stranger she met. She was excited about them and has worn them without ceasing. The couple we found in the bin have now gotten too small and we are not comfortable in them anymore. I suppose I should say Rebekah is not comfortable any more as I never was comfortable with these happenings. The need to do something else was, um, apparent.

Last night I again sought advice from my face book friends on where and how a daddy can go get a bra for his physically maturing (but mentally holding strong at 3-5yrs)little girl. I got some really awesome advice about going to Nordstroms or Macys to be properly "fitted." I was told that the ladies there will make it a great experience and if we go to Nordstroms there is even a great place to go get spectacular deserts when we are done, really making it "an event." I am pretty sure that at least daddy doesn't need deserts for this to be "an event!"

What I came to realize from all of the posts there is that I was asking for the wrong thing. "Fitted" seems to imply cup sizes and all of that. We (and I do me WE here) don't need that, at least not yet. What we really need is a training bra, a sports bra, a camisole or the like. After all, as I posted there, they are bumps, not boobs. Apparently this made things a bit easier and relief was upon me when I realized that we could just go to Fred Meyer and easily... pick something up. Today was another hospital day with Rebekah so she and I went to the hospital, out to lunch, and then to Fred Meyer.

After the realization that we didn't really need a bra and all of the associated "fitting" I was ready for this. It would be no big deal. Just like buying a pair of socks. And if I kept telling myself these things I would be okay, right? Actually I was okay - right up until we walked into the clothing department. Then it hit me, like a brick wall. I literally stopped and felt my heart beat increasing. I forced myself to walk forward but it was like I was walking through a pool of water. I know it sounds stupid, but it was weird; it caught me by surprise.

Walking down the aisle Rebekah spotted the adult women's bras right away. She hollered out "BRAS!!!!!!!" and took off running as best as her little body can run. I trudged along behind her as fast as my body would allow me. We looked around a bit and it was clear that we were not in the right section, but we were close. With the help of a matronly store clerk we found the children's section. There were a lot of kiddo bras (with cups) there and we easily avoided them and focused in on the sports bra type that she has been wearing. The large was obviously too large and we couldn't tell between the small and the medium, although the small seemed to me like what she had grown out of. We took a small and a medium into the dressing room and found out the medium was fine. I am actually surprised that Rebekah didn't ask me if she could wear the one she tried on. They were on sale buy one (two pack) get the next 1/2 off. At least now we were talking something I could relate to.

Rebekah put them into her basket and proudly, though silently thank Heavens, carried them around the store while we did our other shopping. She was kind enough to clarify to the teenage male clerk that these were not for daddy by telling him "my bras, my bras!" She got them in her own bag and walked back to the car full of excitement. I am not sure what happened as we got home as there were women in the house to deal with that (thank you Jenny and Aunt Molly) and I could quickly escape out to the barn to help Blair change some tires in the mud, or something more manly.

Yes, I know this probably should have been a posting more about Rebekah and less about daddy, but to tell the truth, Rebekah wasn't affected by this and daddy was...just a little bit.