Life is wonderful and difficult... and I am grateful!

Monday, June 27, 2011

Warning- poop talk!

* If you don't like the words stool, poop or not read this!

These pictures were taken almost a year ago, on July 16th... the girls' ninth birthday. I love how happy they were and I remember every minute of that awesome weekend with them. Elizabeth is in a wheel chair in the photo because she was pretty sick with Colistridium Difficile Colitis....CDiff. She had a low grade fever, stomach pain and bloody stools.
I cannot believe that a year later, she is fighting CDiff again. Last year, she took a course of antibiotics to cure they infection and it worked. As you know, she has been fighting this latest bout with the infection since April. So frustrating! Remember, we all have the CDiff bacteria in our gut, but it usually lies dormant. For some reason, most likely because of her immunity, she gets the infection and this time, her body isn't fighting it away.
Last week, I wrote that we were waiting for results from the sample I turned in on Saturday the 18th. We waited and waited and finally on Friday I heard from the doctor. A substitute nurse had been filling in for the usual fantastic GI nurse while she is on vacation and instead of freaking reading the lab report, she just kept telling me, as of Wednesday, that the results were in and the doctor would get to me. Actually, the results were not in.... the report was stating that Liz's sample couldn't be processed, not giving us any results. If the nurse had just read the report, we would have known days earlier that another sample had to be submitted. Anyway, Dr. Mathis, Liz's gastroenterologist, called me Friday night and let me know that a trip to the lab first thing Saturday morning was needed. The problem with the sample the week before is that it was not a runny stool sample ( I told you not to read this if you didn't want poop talk!), which is required due to the new protocol by the lab. So stupid. Her doctor told the lab that he wanted the stool tested no matter what the consistency, and so we left another sample this past Saturday.
As we left the hospital on Saturday, Liz said "I still have CDiff, ya know. My tummy hurts like a CDiff hurt."
This afternoon I spoke to the nurse and she told me that Dr. Mathis had been paged, as Liz's results were in... positive for CDiff. Sigh.
So, now I wait. Her stomach has been hurting more, her stool is changing again and she is tired and the nausea is frequent. Her doctor is going to speak with the Infectious Disease doctors and come up with a new plan. So, so frustrating. I imagine they'll want to get her weight this week to see if she's lost more and I know they are talking about trying a new drug, just approved by the FDA in April. She has done 3 rounds of antibiotics since April. Two rounds of Vancomicin, which is an aggressive, hard-hitting drug that should have wiped the Cdiff out the first time, and definitely the second.
Yesterday at church, a video was shown of the prior week's Summer Camp- the camp she was scheduled to attend. She leaned over to me and, crying, said "I should be in that video. I hate my stomach." So, so sad. She can't go in the pool, so swim lessons were cancelled and she has had to turn down swim play dates.

On a happy, happy note, the girls and I (along with my mom) are scheduled to fly to Boston and then head to Maine next week for 5 days at the beach cottage. I am praying that Liz will not worsen and she'll be able to go. She needs the trip; we need the trip. Also, a happy thing is that Liz had a wonderful day today! When Liz was in the hospital last month, my mom took Kate on a special date, so today was Lizzie's turn. She went shopping all day and had (a big!) lunch. She said it was one of her best days ever!

So, if you pray, please pray that Elizabeth will recover. Gosh, it has been months of this nasty infection and she just needs the break. Pray that the doctors have wisdom and can come up with a plan to make Liz well. Pray that Liz's pain and nausea is manageable and that she is comfortable enough to make the trip to Maine.

Thursday, June 23, 2011

Doooonnnn't say last day!

When Travis was little, he said "Doooonnnn't say first day" in the cutest voice, when he was going to start school. I can still hear him saying that if I am quiet and picture that day. The phrase stuck and it has been said many times, now being used in my little family, too. I even used it after my water broke with the twins..... don't say first day = I must do this, but I may not be ready for it. : ) The kids and I have added "Don't say last day."

My girls on their last day of 4th grade. HOW do I have 5th graders? Eeek! I can remember some of you, even conversations from 5th grade. I suppose that's why it seems so old to me. Anyway, here are my beauties, ready to be the big kids on campus next year.

Jackson's last day....

Each child was asked what they would like to be when they grow up. I held my breath, because you never know what will come out of Jack's mouth. His response was " A policeman superhero!"

Mrs. Lance

Mrs. Luyben

I love you, Jackson West. We all can't wait to watch you grow and become anything you want...even a superhero!

Wednesday, June 22, 2011


Things that have made me smile (okay, maybe smirk is more like it for a few of them) this week:

Elizabeth, sitting on my lap in yet another waiting room, said "do you know what I want for my birthday, Mom?" I assumed she would say a puppy, as she always does. Instead she said "Freedom. Freedom to do whatever I want, like Emily's mom lets her do! And money to do whatever I want!"..... Sassy girl. I told her that I wish the same for myself!

A piece of sandpaper, given to Kate from my dad to work on a project, has been on the front bathroom floor since Saturday. How does sandpaper even end up in a bathroom and why will no one, especially Kate, pick the darn thing up?! I have stepped over it and I have even swept and mopped around it twice. I refuse to pick it up.

Jackson talks and sings to himself all of the time, now. It is endearing and annoying at the same time. Mostly though, it is so cute and I have to hide my giggles. Most often he is playing out an imaginary story or dialogue as he carries around action figures or walkie talkies. This morning, he was singing "God loves you and he takes care of you and he watches you and he maybe shouldn't stare at you so much because people should mind their own business!" What.In.The.World?!

My Kaitlin LOVES horses. She has for as long as I can remember. A friend from church and my MOMS group owns her own horse and was kind enough to ask if Kate would like to go to the barn with her today and help. Kate was so excited to be able to do this and it made my hear happy to see her be able to do something all her own. She is there now and I cannot wait to hear how her day at the barn was!

I answered a computer question for my neighbor! This didn't make me smile, it made my laugh because I am so dumb when it comes to computers, I cannot even tell you. Still, I did it and at least one person in the world now thinks I am pretty computer-smart.

I have been smiling all week when I think of the fact that my Holly and the rest of the Gooch family will be here in just 10 days!! I cannot wait to squeeze those Gooch kids (and have Spencer's "no more chemo so my hair is growing back" head of hair brush against my chin as I hug him) and laugh with Holly in person.

When we were at Koi for dinner last week, Jackson ate a large bite of wasabi. Oh, so painful! He was drooling and spitting and crying....and I could not stop laughing. The whole thing was youtube-worthy, actually. We were trying to help him, but he was in pain and in a full-on panic as he wiped his toungue over and over with the napkin. Each time he would get relief, he'd get a wave of burning again. I was DYING and crying because I was laughing so hard. I finally had to have Walter take him outside because I was sure Jackson was going to throw up! That kid can make himself gag and vomit just because, so I was sure he would throw up and I was not going to have him ruin our beautiful sushi! : ) He was fine.... though I am sure he will twitch whenever he sees wasabi, or even guacamole.

The kids have been sleeping anywhere but their own beds for the last 4 nights. Those crazies even slept on the hardwood floor last night instead of a bed, the couches or the futon in the girls' room. They say it is summer and so they can sleep wherever. The sleeping arrangements make them silly and loud and their usual 8:00 bedtime has given way to 10 or even 11. I have to use my "mean mommy" voice and repeat over and over to hush or turn off the lights, but inside I am smiling. One day, probably soon, they won't even want to do this anymore.

Monday, June 20, 2011

In case anyone is reading....

So much to write....but I haven't the energy to blog now.
Elizabeth is in her 9th week with the CDifficile infection. Waiting for results from Friday to find out if the CDiff is still present and if she now has the VRE infection (yes, we are testing again for this).
We had a long visit with the Infectious Diseases doctor this morning. I will post an update tomorrow. Pray that the results are negative, that she gain back the weight she's lost over the past 4 weeks and that her little gut will restore itself-finally.

Tuesday, June 7, 2011

I HATE CDiff!!!!

I HATE C DIFF!!!! I wrote a long post, that somehow was erased, so here is the short version:
Labs from yesterday show the infection is still there. This is awful, for many reasons. She immediately has started back on an antibiotic while her doctors find a new antibiotic. There are few options for treating CDiff and she is allergic to one of them, so it is frustrating.
Her doctor is not going to admit her tonight. He said we will wait 24-36 hours to see how she is doing. Unless her fever spikes, she starts bleeding more or her pain or nausea is uncontrollable, she may stay home. Antibiotics for CDiff are only given orally so she doesn't need an iv or injections. Her doctor will call daily to check in.
CDiff is a nasty, aggressive infection that no one should have for this long. Liz's poor colon can only take so much.
She amazes us with her tolerance to pain and discomfort. She takes each bout of nausea and trip to the bathroom as they come and only wants to be at school.
Thank you for praying for her. To my friends who happened to be with me today when the nurse called me, thank you for being so caring (Jill, thank you for holding me up : ))

Wednesday, June 1, 2011

Oh, crap!

I spent another night in the ER with Elizabeth last night. I picked her up from school yesterday and she greeted me bent forward a bit holding her stomach. She said she'd been in pain since before lunch...that was 4 hours earlier. She is so stubborn and won't ever take herself to the school nurse. Anyway, I brought her home and she went straight to her bed, feeling miserable with horrible cramping and a fever. On top of it all, she has a bad cold. I called her GI doctor, who is wonderful with her care and has given me his pager number so I can bypass calling his nurse or after-hours messaging system. He told me he wanted me to take her in. I played Let's Make A Deal with him and asked if I could watch her for a few hours before making the decision to go to the ER. He agreed I could do so. Two hours later it was obvious we needed to go, as her fever climbed and pain and nausea increased. I paged him to let him know we were going and he called ahead to the ER to let them know we were on our way.
If you haven't been to the ER at Long Beach Memorial, consider yourself lucky. It is a wonderful hospital, run by exceptional nurses and doctors. BUT, it serves many, many people. It is always crowded and busy. Always. I hate it there. I must take Liz to that hospital, though, because her specialists and all her records are there. And, it is the best children's hospital in the area. Anyway, I hate it and am grateful for it all at the same time. Somehow, for some reason, the past three visits for her have had us taken straight back to a bed, bypassing any wait time. Such a gift.
She had an abdominal xray series done that showed she is full of stool. Literally backed up throughout her whole stomach and all the way down. The doctor called it "impressive." I had to giggle inside. Oh, to be impressive poop-wise. I spared her the embarrassment of telling her how amused I was. Actually, it is a reason to be doubled over in itself, poor baby. She has been stooling multiple times a day, so it isn't as though she isn't going. Anyway, she is now on a little treatment plan to help flush her out. Her urine shows infection. The bacteria is being grown out in the lab so that they know which antibiotic to treat her with. Remember, antibiotics can cause CDiff in anyone, but given that she has had CDiff already (as recently as last week), she is super susceptible to a relapse. Antibiotics can only be given to her if absolutely necessary and we must know exactly which med to give, so as not to "waste" the risk of giving it in the first place.
There is concern that the infection she may have is VRE, a bacteria that can cause infection in places, including the urinary tract. VRE is scary because it is a "super bug", meaning it is resistant to many antibiotics. I am not going to worry until we get the positive -or, hopefully, negative results.
She just finished her second course of antibiotics for the CDiff infection she's had for six weeks on Monday. We have to wait a week to test her stool to see if the antibiotics worked. If they haven't, this pain could be from that infection.
So, she had those tests done in the ER and she was treated for dehydration and given iv meds to help her nausea. Her platelets are a bit low, but not low enough to worry, just to watch.
She still has a fever, but has eaten a bit for me today and her pain is manageable. She missed school today and will miss again tomorrow, which she is not happy about, but is feeling bad enough she isn't protesting.
Sadly, we made the decision today that going to church camp is not the best idea for her right now. She was SO excited to go to the week-long sleep away camp, beginning June 19th. My heart wants her to go so badly, but my gut says no. Kaitlin has decided she doesn't want to go without Liz. Tough. My mom and I plan to take them to Maine to rest and just be. There she can play on the beach, sleep and soak in the wonderful East Coast ocean air.
If you pray, please pray that she does not have VRE. Also, that she stays out of the hospital. Thank you for caring enough to read our story and care for us.