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

Thursday, July 26, 2012

Update (too tired to edit, please excuse errors)

We are very lucky to have so many people who care about our Liz and support us by praying for and encouraging her. Many on facebook have asked all day how she is doing, so here is an update-

The last three and a half days have been pretty bad for Liz, and last night just capped off the pain, embarrassment, nausea and inability to control her own body.
We have known that Liz is impacted again since the 14th, when she showed obvious signs of it. Once home from our trip, I started her on some heavy duty help to try and relieve the impaction issue. That didn't help.
Earlier this week, she had horrible retching and stomach pain along with intense soiling. We thought a trip to the ER was going to happen because her anti-nausea medication wasn't working as well as it should. We got through that night and her issues have continued. On Tuesday, Liz did a clean-out routine of enema and Miralax, that should have made anyone rid their body of any trace of stool. For our Liz though, that has not been the case. For the sake of sparing you the gross details, and keep some sense of privacy for Liz, I will leave out much of what has been happening. I will say thought that my poor girl has been in a diaper for the last two days and she is uncomfortable and in pain.
We had a previously scheduled appointment today with GI and the following was discussed:
Even though Liz needs a diaper (gives you an idea of what her body is doing) and we finally started seeing a positive response to Tuesday's the clean-out late yesterday, she is not cleaned out. So, tomorrow she must do another awful clean out routine. So sad for her.
If the clean out does not work, then she will have to have a CT to determine if she has a blockage.
If the clean out is successful, then we go to the next step in the plan......
I should say, there has been a recommendation made for the next step, but I am not sure I can follow through with it- Dr. T wants Liz to start a new drug for motility issues. I am very hesitant to give her the medication because it isn't approved for someone as small as Liz, has side effects, and just makes me nervous overall. I have overlooked these same things other times when I agree to start a new medication, but I don't know how many times I can do that. Dr. T. says that this is a last resort option and if he didn't feel strongly that it should be tried, he wouldn't propose Liz take it.
Dr. T is going to call UCLA and speak to GI there and find out if they have any recommendations. I appreciate that he has no problem getting the opinion of others and only wants to have Liz well.

If I do allow the medication, we should see it start to work pretty quickly. If it doesn't help her motility or if she continues with nausea, pain and distention, then we are forced to become more aggressive, and get into the area of scans being the least invasive and exploratory surgery being talked about.
The g-tube is still an option for Liz, and we will continue to keep it on the table. Dr T said that he has no problem placing one in Liz, but that he wants us to have the choice of keeping up the quality of life she has right now (which, though a g-tube is no where close to the most invasive thing to have, it does change the way a person lives in some ways). Having said that, because dehydration has become an issue so often, a tube would be a great way to be able to hydrate her, in addition to giving her extra calories. We talked also about how TPN is no longer something we want to have done again. Too risky without having a known cut-off time, and a tube is something I would choose now over TPN.

Liz's motility has been a worsening issue over the past couple years. The GI team feels it is caused by 1. Nerve damage from having so many surgeries, and 2. Her colon being so dilated.
Obviously, a person cannot be so impacted- it is beyond painful and gets to a point of being scary. For Liz, her chronic CDifficile and immune suppression complicates the case because stool sitting around her gut is not good and only runs the risk of playing host to an infection.

So tired of this shit. Not classy to say, but it is true.
Thank you for continuing to care about our Lulu. If you are praying, please pray for Liz to have as easy a time over the next 36 hours as possible. Pray that this third clean out works, as she in big trouble if it doesn't.
Pray for me as I ponder, research, pray and weigh options about whether or not to agree to the drug.
And, pray for Liz's mind and heart- she is tired, embarrassed and just wants to be normal. Diapers at 11 years old is not normal : (

Trusting in Him.

Monday, July 23, 2012

At least....

"At least we are a little better than this time last year."
These were the words of Elizabeth's pediatrician today. First, I needed that reminder. Liz is better than she was this time last year. Last summer cdiff ravaged her poor gut yet again and being free of that infection right now is much better than last year! Dr. L is speaking my language when she starts a sentence with "at least." There are times I get through a day by reminding myself that "at least"....... we are blessed in somany ways, or at least Liz is so much more healthy than some, or at least this can end for my girl one day.
At least = luckily, wonderfully, thankfully, prayerfully, hopefully.
Second, how much do I love that Dr. L is so invested in my girl that she refers to her as "we"? She is walking this with us and she absolutely is part our "we."
Dr. L. said those words as she grabbed my arm, told me to take a deep breath and hugged me for a second time. I quickly and quietly had wiped tears away earlier in the exam room and I know she noticed my obvious frustration and concern today. I try so hard to keep my frustration, anger and tears out of sight from Elizabeth, but sometimes it overtakes me. Today, as Liz was being examined and wincing from pain, I couldn't help from starting to cry.

Some of you know that last night was a difficult night for Liz and we were almost sure of needing to head to the ER. In fact, I called Walter home early from work which I never do.
Liz started heaving and retching and it took much longer than it should for her anti nausea med to kick in. She also had horrible stomach pain and her poor little bum is painful and bleeding. Both of those issues I knew could wait until today, but the retching is something that needs IV medication if her Zofran at home doesn't work because she cannot blow her Fundoplication.
Anyway, the medication finally worked and she ended up falling asleep.

The cause of it all, we are sure, is impaction. Her motility is awful and even on a huge amount of Miralax, mag citrate and Dulcolax, she is impacted. You'd think this would mean a person could not go to the bathroom, but when it is this bad, she actually can, as stool works itself around impacted stool. Even more evident of that is when she soils...which is happening throughout the days. How awful for a preteen girl is that?!
It is bad and there is nothing more I can do from home to help her, so I've called the GI doc and I went to her pediatrician this morning so that she can put pressure on the GI team to figure something out.  Everyone wants to avoid admitting her, but we may have no choice.
Dr. L is pretty fired up, which is good for us. She will talk to GI and she is also crazy-frustrated with the Hem/Onc doc at CHLA who has yet to call us both back with his interpretation of Liz's bone marrow slides. I haven't yet written about results from her labs drawn at CHLA, as I have been waiting for the final notes from Hem/Onc there.
Poor Kate went to the office with us today because she is pretty sick with a horrible sore throat. The kid has had it since Thursday and hasn't been able to eat for two days because it is so bad. I feel awful for her; she is miserable. Dr. L. said it looks like Strep and half-jokingly said that I need to send Liz away from our house. The girls got a heavy lecture from her again about hand washing and how nothing in our home should be shared.
Instructions everyone should follow of course, but the weight of it and knowing the gravity of what Liz needing an antibiotic means is yet another reminder of how not-normal this whole thing with our Liz is.

I hate all of this. I hate that our wonderful couple of weeks of Liz feeling pretty good was like a dream, because like a dream I knew we would eventually be snapped back into the reality of her health issues. 
Don't get me wrong- I just know we WILL get to a point where the dream of good health ( or maybe just wonderfully "fair" health) is a reality, and I won't worry daily because any issues she may have will be managed.
For now we are not at that point.
We are, though, a little better than this time last year and I must remember to be encouraged, excited and comforted by that on difficult days.

"We were promised sufferings. They were part of the program. We were even told,  'Blessed are those who mourn'" - C.S. Lewis...... (for they will be comforted)

Tuesday, July 17, 2012

Our Gift

Late last night we returned home from our amazing ten day vacation. As we pulled up to our house, even in the dark, we all gasped...... our front yard looked beautiful!
As hours have passed, I have found out the details of our wonderful gift. Laurie Turley has visited Elizabeth in the hospital and knows how much she enjoys the view of the hospital garden, especially during stays when she is in isolation and cannot leave her room (like the last 19 day stay!). Everyone also knows how special butterflies are to Liz and how no matter what, they flutter by her window daily during each hospital stay and seem to dance around her often as she has normal days outside of the hospital. Anyway, Laurie knows that Liz appreciates the beauty and serenity of a garden. So, she organized the huge project as a surprise gift. Isn't that amazing?!
If you think that is amazing, you will smile at hearing what I learned today- that dozens of friends and even people who don't personally know our family came together on Saturday to work in our yard and get everything planted. I can only imagine how awesome it was for our neighbors to see person after person arrive at our home to work. Laurie also shared that in the days after planting, friends continued to stop by and leave things in the garden - butterflies, flags, chimes. A local landscaper planned the garden and delivered the plants (I will get his company name and share that soon!).
Laurie and all involved had hoped that everyone would remain anonymous which is just another example of the selfless act this project was. laurie also made me promise not to write thank you notes...and I will try hard to keep my word. I will say here though.... THANK YOU. Thank you all for showing our family such kindness and generosity. Know that this gift touched us in ways so much more than the beauty of having the garden. Laurie said she wanted Liz to have a place to watch her butterflies and have beauty around her outside on days she is kept home while sick, being out of school, or because of being immunosuppressed. I can assure you all that each of these things will happen.
There are no words to express exactly what I wish to say and thank you doesn't seem enough.
For those who helped-  know that your time and effort will be remembered each time I water the garden, or watch Liz enjoy the flowers or squeal over seeing yet another butterfly.

Our empty flowerbeds had been beautifully landscaped!

The garden is FULL of butterfly-attracting plants. Elizabeth said
"Mom, doesn't this remind you of the hospital; the good part of the hospital? I LOVE the butterfly garden"

Do I think the fact that butterflies seem to surround Liz as she goes through life is a coincidence?
Absolutely not.
Butterflies start out so constrained and useless as they stay bound in the process of  waiting for the time to spread their wings.
And then, they dance.
They complete the process of change, open up free of their cocoon....and they dance.
That is my Liz.

Sunday, July 15, 2012

A quick update- We are still on vacation. It has been an amazing trip and we've made great memories. As if it were a gift, Liz has been doing so well!! Yesterday she started having tummy pain and lots of soiling which is a sure sign that she is impacted again. We'll get home tomorrow night so we'll be able to help her more there. It is a big bummer, but seriously- except for needing her anti nausea medication a few times and some headaches, she has felt good!!! A blessing and answered prayer. Yesterday was my brother's wedding, today Walter and I celebrate our 12 year Anniversary (also my parent's 40th anniversary!!!), and tomorrow the girls turn 11. Fun stuff! Grateful for SO many things....

Thursday, July 5, 2012

A Fabulous 4th

Last year the 4th of July was yet another holiday Liz spent in isolation at the hospital.
This year, she was super excited for a fun day with friends and family!!

Our first stop was to celebrate Bubba's 12th birthday! Collin Bubba Presley is SUCH
a little hero and it was a privilege to spend some time with Team Bubba.

Icing Smiles is an amazing organization that creates dream cakes for super brave kids (and their siblings) like Bubba
and Liz. This was Bubba's cake.
Liz would like a Paris themed cake, of course!

Liz thinks Regan's dog, Stanley, is worth hugs and trying to take home as a party favor : )

Next we were off to the Benefield's home for a get together. Jackson was happy to be reunited with Ben.
A month apart feels like years to little guys.

Look at Lulu's face!

Her smile says it was a fabulouss 4th!!!

Monday, July 2, 2012

Update 7-2-12

Writing this as Liz and I sit in the hospital lobby, waiting to go through the outpatient admit process the hospital requires for labs and the radiology dept. At this point she should be able to just walk in this joint and have our insurance info immediately register, but unfortunately we have to go through this same ridiculous process every time. On the heels of a great trip with Kate and as we are just days away from our big family trip back East, I am bummed to have started out our day this way- two hours at the Pediatrician for a disappointing appointment and now a trip to the hospital for an abdominal series (X-rays). Liz has symptoms of CDiff so we will test for that. Her doc thinks she is impacted, so we'll confirm with this KUB. Liz has also lost a little over a pound in the past three weeks which just makes us nervous that she is falling into her cycle of impaction, infection and weight loss. A serious bummer.

Dr. Lee called about an hour ago to tell me what I ready knew (because I am able to read Liz's films myself at this point)- Liz is impacted. Blah. This means that she is literally full of stool and after talking to the GI doc, they have decided  that tonight Liz will do a clean-out, just as we've done before for impaction and the same as patients do prior to colonoscopies. Not fun at all. She's going back on the Floristor (probiotic) as Dr. Lee and the UCLA gastro team all feel that when she has stool just sitting in her gut, the CDiff starts to rev up. Pretty crappy.
Liz didn't have labs drawn today because the NBT (Nitroblue) test requires the blood samples to be picked up and taken to CHLA by noon. We didn't even leave Liz's appointment until 12:30. I asked to just do the test when we get back from vacation, and Dr. L said we could, but now because we found out late this afternoon that her last CBC shows low counts, Dr. L wants Liz's blood drawn before our trip. So, tomorrow she'll have labs drawn for Prealbumin, a CBC and the NBT.
Liz's white count is down to 2 ("normal" range is 4.5-13) and her neutrophil count is down to 1.1 (yikes!). Dr. Lee wants to know these counts specifically before the trip; Lulu will definitely be wearing a mask on that plane with counts like these!

So that's it. Back to the reality that this seems to be something Liz has to deal with indefinitely. We just can't escape it all, for now at least.
If you are praying and would like to specifially pray for her, I would ask that you pray for:
- Liz's weight to climb back up. Once she gets a clean out, her weight will go down even more. Dr. Tran was very direct when he said she must not lose any weight at all before her next appointment on July 24th, or else we would be forced to schedule gtube placement.
- Labs drawn tomorrow would show that her white count and neutrophils have increased. Both of these are the front-line cells for fighting infection.
- Her clean out tonight and tomorrow is not ging to be fun. Please pray for her patience and for her poor bum which is already bleeding from excessive stooling and her fissures.
A BIG thumbs down to having to spend our afternoon at the hospital.
Boo! We have places to go, people to see and things to do.

I can read her films myself by now, so I knew immediately that Dr. L was right....
Liz is, um, literally full of crap.
I wish you could see a photo of a "native abdominal cavity" next to one of Elizabeth's x-rays.
After so many surgeries and so much of moving things around and twisting things together, her gut is pretty cool looking.