Admitted

This cute giraff has a soothing sound machine inside. I bought two of them months ago knowing I would give one to Liz the next time she was admitted. The second one I thought I would give to a friend, but Kate is so sad Liz and I are at the hospital, I thought she'd get some comfort in having one.


It is 11:00pm and things have finally calmed down enough for Liz to try to sleep. She was admitted to the hospital at 5:00 this evening and it took this long to get her orders written, xrays done and finally her iv started. Phew! Luckily, she was a direct admit which means the doc had her admitted from home rather than having to go through the ER. I am so happy about that because I hate it down there! We avoided the ER mess, the hassel of that extra step and the $200 ER co-pay.

Liz is here because of a few reasons..... her pain needs to get under control, her lungs still aren't clear after 10 weeks, yesterday's chest xray showed a distended colon, and the GI and Infectious Disease teams are thinking of trying a new mix of drugs for the CDiff. Basically, things are getting out of control.
I hate that Miller Children's does not have every patient room as private. Who in the world came up with the idea of having sick people share the same space? It is awful! Luckily, Liz needs an isolation room so we don't have to deal with strangers, extra germs or privacy issues. Actually, we have to deal with all those things in here, but we don't have a roommate and for that I am grateful.

Elizabeth is feeling very out of control herself, I can tell. She is freaking out about germs, refusing to use the bathroom here (she fially did), refusing to get into bed because she said someone at one point had died in it (she finally got in), refusing to take her meds unless she was promised a puppy (I said I would talk to Walt), and then, when the nurse asked her to rate her pain on the number scale, Liz told us to guess it because she wasn't going to tell us ( I wanted to scold her, but I was secretly laughing inside at that one!).

Liz finally has fallen asleep....so off to my awesome (not at all!!) chair bed. Please pray for Liz and if you see Kate or Jackson around town please give them some extra love, too.

Vicious

Again I find myself full of thoughts, but just too tired to put them into words. If you are reading this, if you are hoping for an update because you have concern for Elizabeth; if you are praying for her and read this blog to know our specific prayer requests....thank you.

Elizabeth is not doing very well and I am concerned she will be admitted tomorrow. She is in much pain from the CDiff and just so uncomfortable. She asked for Codeine twice today, which she never does. Tonight she also begged for Zofran (anit-nausea medication) even after I reminded her that she wasn't due for another dose quite yet. That alone speaks to how bad she is feeling. Today was day 5 of the 14 day antibiotic to hopefully kill the toxin, but her symptoms are no better and she is actually feeling worse.
Surprise, surprise, her stool labs confirm the CDifficile infection is back. A good friend of mine, Katie Bennett, called CDiff "vicious" - that is a perfect word for it! It is mean and it vicious. It has taken residency in Liz's poor gut and is putting her intestines and colon through hell. Vicious is right!

Her cough is still gross and she winces in pain each time she coughs or inhales deeply. She had another chest xray today but it didn't show pneumonia. Given that she's had the cough for 10 weeks now, and her lungs don't sound clear, she'll have labwork done tomorrow to check for a strain if infection not detected by xray. Fantastic. Vicious.

So that's the update..... Elizabeth's latest summed up in two short paragraphs. You'll have to read between the lines to hear all I am leaving out- the page-long paragraph I could write if I wasn't feeling so discouraged.

A side note**** the amazing fundraiser planned for our family, is next Monday night, here in Long Beach. Jamie and Kemery have worked very hard on this and we are just so grateful! The Grunion Gazette is running a story on us/the fundraiser, and it should run tomorrow online and Thursday in print.

Thank you for caring, praying, wondering and following.... I appreciate you.

Ugghhhhh!

It has been a while since my last post. You know the phrase "If you can't say anything, don't say anything at all"? Well, I have been living that phrase for the past week or so. I actually have said this week how grateful I am for access to medical care and for the lives of my family and for my health.....but I am also burdened with an incredible frustration and that seriously effects my positivity. So, I have been pretty quiet.

The latest update on Liz is pretty negative, so I will start with a positive; with a wonderful blessing....
As I rushed out of Target tonight with Elizabeth's latest prescription, there was a man soliciting on behalf of "the children." He bellowed at shoppers to "C'mon and give money to the children!!" As he saw me, he asked and I shook my head no. He asked again, louder. I said "Not today." He then said "I know you have money in that big purse to spare."
If you know me, you know my "are-you-freaking-kidding-me face." Let's just say I gave him that face. What I really wanted to do was say "Yes, I am blessed and I have much more than many people in this world have. I also have less than some people in this world have. And though I have a 'big' purse, a purse with money in it, I just spent $330 alone this week in co-pays and medications. I also just found out that this new prescription will cost me $325.00 over the next week. So, please don't assume what you don't know."
I wanted to say all of that, but I didn't. Instead I kept my yucky face on and marched to my car, while tryig to remind myself that I am grateful to even have access to the medication.
Now, for the wonderful blessing- Our church has been unbelievable with how supportive they have been. Cards for the family sent by members, gifts for the children, wonderful artwork and prayers from the Sunday School classes, and the constant reminders that we are being prayed for. Our Life stage Group (parents of young children) held a garage sale last month and last week, we received a check in the mail from proceeds of that sale. This is such a gift and a reminder of how He works in our lives, through the kindness and generosity of others.
I told you it was a wonderful blessing!

Now for the update.
Thankfully, Liz does NOT have Cystic Fibrosis. That is a harsh disease and we are praising the fact that this is not a diagnosis for her!
We will meet with the Pulmonary/Immunologist again next week to go over all the other labs, but I do know that some results that have come in show a problem with her lymphocytes and immunity factors. I will post more once I speak to the doctor.
She still has the cough she's had for two months. We thought the antibiotics the doctors prescribed for a sinus infection would clear that, but the cough is actually worse.
Over the past four days she has been complaining more about stomach pain and she's lost a 1 1/2 lbs since last week. Last night she started with bloody stools again. Our fears that her being on the antibiotics for her sinus infection would cause the CDiff to take-off have come true. We are so, so sad for her. She started on a drug today for CDiff and if she's not showing any improvement by tomorrow afternoon she may be admitted to the hospital. Her colon is a mess and the cramping, nausea, fatigue and bloody stools are just awful.
I wish I could write more of how I am feeling, but right now I am just too worn down to find the words. Please, please pray for our Liz.

Update in photos

Our day in photos. Please pray for Liz as she has not been feeling well tonight at all. We see the doctor first thing in the morning if she can avoid the ER tonight.


Liz is so brave. She doesn't flinch at all and could probably draw her own blood at this point.




Liz has only a couple Lab Techs that she will allow to draw her. Thank goodness Ronnie was working today!




SO much blood!! We had to split up our Lab trips, as so much is needed for the 17 tests that are being run. We'll have to go back next week to finish.




Next on the schedule was the Cystic Fibrosis sweat test. The whole thing is fascinating and Liz decided this will be the topic of her Science Fair project this school year (which is why I took the pictures).








Two probes are placed on the skin and currents are passed for 5 minutes. Liz said it felt itchy and a little prickly....



...this "watch" is worn for 30 minutes. The sweat collects into the coiled tubing, which is clear, but turns blue as sweat collects....





...the coil is unraveled and the tubing is emptied into a bottle....




And there you have it.... a tiny vial of sweat that will tell us Liz does not have Cystic Fibrosis.




Around 5:00pm tonight, Liz started heaving and having a lot of stomach pain and we wondered if we'd end up in the ER. Her Zofran seems to have kicked in though, and for now we are home. In perfect timing, a wonderful family from our church, who we have never met before, stopped by with this huge bunch of balloons. Aren't they fun?! They brought many smiles on a day that was pretty yucky for Liz.



So that's our exhausting, three-hour-lab-trip, retching, bloody day. At least there were balloons at the end of it! : )

Update

You think you have had a bad day? Well at least you aren't _________....now she's had a rough day! Admittedly, maybe even a bit shamefully, I had this exact thought today after running into a girl I went to high school with. Bless her heart, she had an eight week old baby and shared that her husband had broken both of his arms when the baby was just two weeks old. Both. Of. His. Arms! Girls, can you even imagine how awful it would be to have a newborn to care for and a husband who, rendered just as helpless and needy as the baby, was also requiring care? Awful!
As I walked Liz to the radiation department for her xrays I thought, "well, at least I'm not __________!" That sounds so bad, but sometimes perspective is gained when we see how others are suffering in some way. So, as much as it exhausts me to care for Liz sometimes, at least I am not caring for a newborn and a husband with two broken arms! Right? Right!

Talking about perspective and how people view things, today Mr. Jersey Shore made me laugh out loud... My eye is now totally blood red. Not just a little bloodshot, but a mess of red. Anyway, I went to an eatery to pick up pizzas for the girls' class and the owner, who is Jersey Shore aged about 20 years, says in his awesome accent- "Hey, are you alright? Cause, uh, you're eye is looking a little red there." I was dying because "a little red there" is the understatement of the decade. I think he was wondering if I was hemorrhaging right there at the register and wanted to make sure I was off his property before I did. So funny!

Today we met with the Pulmonary doctor who also happens to be an Immunologist. I liked him very, very much. I also feel like a schoolgirl just thinking about him because man, he is so handsome and has a Soap Opera voice. I have mentioned how Dr. M, the Infectious Disease doc, has been referred to as Dr. Cute a handful of times, but Dr. R is Doctor Ridiculously Cute. I realize I also sound like a school girl speaking about his looks, but when you are jumping doctor to doctor, week after week, a little silliness (and truthfulness at the beauty of Dr. R!) goes a long way. Anyway, I am happy to have him on our team...and not just because he's dreamy.

There is TOO much to say about what was discussed, so I'll keep it simple. First, the Cystic Fibrosis test will be tomorrow morning. This is a sweat test which is exactly what is sounds... they will stimulate sweat, collect it and check for chloride levels. Dr. R does not think she has CF, but agrees we need to rule it out. In addition to the CF test, she will have labs drawn to test for 18 different diseases/disorders/abnormalities. It is so much blood that Dr. R recommends splitting it into two Lab visits.
Based on labs, we now know that Liz has a new diagnosis of Immunoglobulin Deficiency. For my medical fam, her IgA level was 40. Being Ig deficient could be the cause of many of her symptoms (excluding her GI issues related to all her surgeries), as the deficiency leaves your body without the antibodies needed to fight infection. We are waiting for results from further tests as the doctor feels she may have more than this issue going on right now.
Tomorrow she will start a diet called the Elemental Diet. This is a diet used either by mouth or through iv or feeding tube, which will allow her gut to rest. Her main intake will be an amino based formula that is made of digested fats, minerals, etc... her body won't have to work because it has already been done for the formula, thus giving her gut time to rest and heal. This diet is only done in serious cases where a doctor thinks it is necessary. In addition to the formula, she can eat a small amount of rice, rice bread or root vegetables. This will only be done for two weeks and is done under the physician's care....

More tomorrow....

Bleeding

You should see my eye. Those who have had the pleasure of seeing me this week can attest to the fact that I am a bit scary to look at....my right eye is literally bloody-red where any hint of white should be. Not pretty to look at. I think it is from a blood vessel, but it has gotten worse over the last four days so I am going to the eye doctor tomorrow...because I have so much time to spend at yet another appointment. I don't have high blood pressure, I didn't sneeze hard or cough, and I haven't had any eye trauma. Do you know what the other possible medical reason for a burst eye vessel is? Stress. That I do have.

Maybe my body is telling me something. Maybe it is yelling at me to admit how tired I am and how no matter how many smiles I put on, I am carrying stress and I should not ignore that.

Or maybe my bleeding eye is like a warning to people...I am bleeding inside! Who cares about the eye? It is my heart that hurts. My Liz is sick and as I watch her feel awful, take her meds, miss days and weeks of school, adapt to what is beginning to feel more like a new normal rather than a "bump in the road" illness...I feel like my heart is bleeding.

Before

I like this picture. I liked it when I took it and I especially like it now because to me, this represents "before." Before that last surgery just a month after this photo was taken. Before Liz started bruising and acting so tired and having her hair fall out more than usual when I would brush her locks. Before she got sick. Because even though she has had years and years of stomach surgeries and procedures, she was never like this. She was never so sick. I can't stress enough to all the doctors and friends who are new to praying for her, how much Liz changed after that last surgery.
This photo is Elizabeth. Before.

Liz tried school today....and lasted the whole six hours! Her teacher is wonderful and if wasn't for her there is now way I would be able to feel comfortable leaving Liz. School has made her exhausted and she says she feels like she is sick (duh!), but oh my, how good for her little-big soul to get to be around friends today and have the normalcy of school!

She is coughing more than she was last week and her fevers, congestion and headaches persist, so the Infectious Disease doc, Dr. M (aka Cute Doc),and her Pediatrician decided today that the bacteria causing her sinus infection is not reacting to the antibiotic she's been on. So, they are switching the antibiotic. Normally not a big deal, but given the CDiff, a stronger antibiotic is scary to give her....which is why so many doctors need to talk about it before prescribing it for her. Please pray that her body fight the CDiff, as this medication for the sinus infection leaves her gut weak to it.

I mentioned the other day that Dr. M. was going to arrange for Liz to get into the Pulmonary doctor as soon as possible. He did make the call and speak to that doc and she will be seeing him on Thursday morning. She will also have the test for Cystic Fibrosis at that time. We have heard so many great things about this Pulmonary doctor and it is wonderful that he is also an Immunologist, which will benefit Liz, too.

Please keep praying for our Liz!!