These Boots

Only Elizabeth Claire would go to the hospital wheezing, bleeding, in pain, tired and just plain sick....dressed like this. I swear, this kid was born looking for the nearest red carpet or runway. Once again, those who doubt God and go for the whole science reason for our being here, I will say to look at my twins. Same DNA, same fingerprints, same environment at the same time, yet they were born different; they were born who they are. And Liz was born addicted to fashion and probably wondering why in the heck she wasn't dressed in a great jean or shoe as she entered this wonderful world. Anyway, those boots were just too much today and she giggled as I sang "These Boots Were Made For Walking'" to her. Alright, I will admit that I may have added my own take on the song and inserted a sentence that may have gone something like "these boots are made for kicking CDiff's you-know-what!" I am not saying I did. But maybe. Probably.


Liz is sick. Tuesday she left school early with a horrible sore throat, fever, and just feeling bad. I took her to the pediatrician Wednesday morning because I saw white spots in her throat and with Liz we have to watch her super close because she can't be on antibiotics right now if we can avoid it at all. Her doctor thinks she has a respiratory virus again and we'll watch her for the next few days. Her chest hurts because air isn't moving as it should through her lungs so we upped her breathing treatments to four times a day. We're doing sinus rinses daily to help clear her out so that we can avoid another sinus infection (which would require antibiotics, which would be awful). Short of putting her in a bubble, we can't do much. So, there's that.
And then there's this.....
We think her CDiff was not cured by the last round of antibiotics as we'd hoped and that it is beginning to rage, causing the colitis again. She's had some blood over the past few days in her stool but last night, as I was running out to two meetings, she called me to the bathroom and she'd had a lot of bleeding. I thought I was going to throw up I was so upset.
Today we went to her GI doctor and he examined her which resulted in her admitting to a pain level of 7 when he pressed on her stomach. Liz is usually not as honest as we'd like her to be, hiding how much pain she is in or how bad she feels. I'd hide it to if I were her.
I'll take stool samples to the lab tomorrow and we'll see what those show. The doctor talked with me about cases where the test is a false negative, so we'll have to follow that road perhaps if these labs come back negative. UCLA is being so we can get back on the fecal transplant "train"...it is a process.
She's lost a pound in just 10 days, which may not sound like much, but for her is huge. It took her a lot of work to gain weight, so losing it is a bummer.

This afternoon she told me she does not want to die and that she knows she probably will if she has the transplant. Oh my. I gasped, actually. She is sure, she says, because she has heard us all talk about how new the procedure is and how rarely it has been done in the States. I asked her to remember what else she has heard us all discuss...that it is an easy procedure and while there are risks, riding a bike is risky. Life is risky in general and she can't be worried about dying. I asked her to remember how I have always been so honest with her about everything medical and she needs to feel in control as much as she can, so that she will have all of her concerns addressed before I "sign the papers" and I will allow her to sign them too. She nodded, said 'we'll see" and then asked for a kitty.
Sweet girl.

Update

I realize it has been a while since I've updated on Liz. The reason for that is mixed.... For one thing, it is nice not to talk about the hospital, infection or illness for a while. Though it is obviously necessary to talk about those things as we work to get Liz well, it is a bummer to have to have it all as so much a part of our days. I love the times it is not..... and then I am struck with the reality that although this is not who Liz is - it is not who we are- it is a part of our life for right now.
The note above is an example of that. Kate and Lizzie's teacher had them write a note for their parents, to be left on their desk for us to find during Back to School Night. It is clear what is on Liz's mind.

Walter came to me upset the other night because he overheard the girls talking and Liz said "Mom wants us to go away to college. You can go away for us, but I need to stay here and go to LB State so I can be close to my doctors!" No matter how much we point out that she will be well by then, that she can do anything she wants, the reality is that Liz has her health on her mind. She is getting too old to distract from it all, and when she isn't feeling well she talks more and more about her health. It is such a fine line of letting her express herself and have power over her feelings about it all, while balancing her not letting this consume her. I have always said I will keel over before I let this become who she is. I just won't allow her to have the mentality that she is a "sick kid".

The update-

Two days before her colonoscopy and endocscopy, Liz had labs done on her stool. That stool sample showed no CDiff. She is still in pain and having abnormal stool with some bleeding, so the doctors aren't prepared to say yet that the CDiff is gone. She'll be tested again later this week or next. Things with the Fecal Transplant are on-hold while we wait. It is amazing to think that the CDiff may be gone, but we are hesitant to get excited because we can't say yet that that is the case. She is on no antibiotic for the CDiff right now, so the next weeks will be telling.
She is still being treated for the Candida in her esophagus. The Infectious Disease doctor added another week of antibiotics for that because we don't want it to spread to her gut.

Today she doesn't feel well at all. She has a super sore throat and chest congestion and has started with a cough. She was just sick with a respiratory virus and because of that she hasn't been able to get her flu shot (she needs it because of her weakened immune system)or her shot to prevent pneumonia (because she had pneumonia this year she must have this)...she was supposed to have those this week, but now she is sick again. This is so frustrating. We are praying this stays a simple cold as bronchitis or strep or a sinus infection or pneumonia would require an antibiotic and she cannot be on an antibiotic for those things as it would cause a recurrence of the CDiff. Such a cycle.

So that's where we're at. Waiting, watching, praying and hoping. Please keep praying with us for our Liz.

Character

I think my dad was in heaven helping Jackson this afternoon. I am sure it brought back memories for him....and I'm sure he is happy he may actually have a kid to cheer on at the rink instead of watching strangers play. He misses my brother terribly.



I think this was the point at which he said "I'm gonna punch some faces!"
Whoa there, tough guy! I reminded him that there is no hitting on the ice until you are a big man and you are taught how to fight...and even then it is a dumb thing to do. Seriously.




"Mom, do I look like Uncle Travis?!"




"Okay, now do I?"



Getting a bit better....




This coach was wonderful and I was grateful for his help and attitude with Jackson.



He was exhausted after the hour. Look at those yummy red cheeks!




Supportive Liz and Kate...who have decided they love this hockey thing because they get to wear their cute coats and scarves (rare for SoCal) and hit-up the snack bar.



I have been moved to tears with pride for Jackson a few times before. I remember watching him in speech therapy when he was younger and knowing he was trying so hard to mimic the therapist no matter how difficult it was for him to find words. Last January he was very sick and hospitalized six days. He handled it so well and I was proud of him as he endured the pokes and pain.This afternoon, though, I felt a different kind of pride that I struggle to find words to describe. Tears I have.

Today Jax started a four week program geared towards kids under 8 who have never had hockey lessons before. He has been looking forward to hockey for months and today couldn't come fast enough for him. Travis called from the road (he's with the Winnepeg Jets right now) and spoke to Jack-which made him even more excited- and then talked with me-which freaked me out more than I already was as he asked me about gear and how to put it on. My dad and brother both recall how Travis asked to try out for the ice hockey team without any knowledge of how to put on the gear. Trav literally copied what he saw the other boys doing in the locker room that first day. Luckily my dad has had hundreds of times spent on his knees as he laced skates and suited-up Trav. I was so happy to have his help today(I also learned how dumb it is to wear flip-flops to the ice rink)!

My son, my amazing son, fell and got back up for an hour straight. It killed me as a mom to watch him fall and struggle to get back on his feet time and time again. My instinct was to run onto the ice to help him. (For family and friends who were at the beach house...Jackson's falling was equivalent to Trav's attempts at Paddleboarding in Oceanside. You all know how painful that was to watch! Don't kill me Trav, it is the best picture I can give of how difficult a time Jack was having : ) And for the record, to those who weren't there, Mr. Hockey did finally catch a wave on the paddlebaord!) Skating in full-gear on hockey skates is much different than skating for fun. A few times his eyes caught mine and he had such a look of defeat that it took everything not to pull him off the ice and head home.
Not once did he say he was finished. Not once did he give up or ask to go home or say he couldn't do it. Not once during that hour of dozens and dozens and dozens of falls.
My dad leaned over at one point and said "this is character building stuff!" He is right and man, did Jackson show us he has character. Will he be the best or grow up and go Pro like Travis? Probably not, and that doesn't matter. I just want him to do what he loves and he is passionate about, whatever that turns out to be.

I will remember today for the rest of my life. Years from now I won't recall what color jersey Jax wore today or how many kids were out on the ice with him. I may not even be able to picture how he looked the times he did skate or move the puck. What I will remember is how he never gave up no matter how much he struggled. I will remember the character he showed and how proud I felt.

Princess

My Superhero loves me; he adores me! The older I get, the more I realize there are few things I know for sure - my Jackson adoring me is one of those things....at least for now.
Years ago I saw a news segment about a missing woman. Her young daughter was asked to describe her mommy's appearance and she replied "She looks like a princess. You should just look for a princess" For obvious reasons, as a mom the very thought tugged at my heart.

Jackson often asks to brush my hair and if I give him a penny, he'll give me a neck massage. If he's loving me especially on a certain day, he'll tell me I can keep the penny and he'll do it for free.
He fights with his sisters to sit next to me at dinner and he loves to help me with chores. If he likes me most, I even get to be the dinosaurs wen we play and not the cars...the dinos always win the cars in fights, he says.

I expect much from my little guy because, after all, he will one day turn into a man and it is our job to raise him to be a kind, respectable, responsible man of God. At his young age he accepts my challenges for good behavior and kindness eagerly as he so wants to please me. I realize this may change as he gets older, but for now just a nod of approval from me makes him happy.

Yesterday as Jack sat cuddled next to me,I had the memory of that news story flash into my thoughts. I have no doubt that in Jackson's world, I am a princess. That will fade, I am sure, but for now, I will soak it in.

No Offense

Elizabeth went to school today for a few hours!!! YAY! She is still in pain and very tired, in fact yesterday she slept six hours during the day, but it is important she be at school. Yes, she needs the instruction and in-class time, but even more than that, she needs the socialization and to be a normal kid. Sunday she announced "But I caaaaaannnn"t stay home with YOU(me) for another day!...No offense."
Missing days and days and days of school is not good....so she went. We knew she should start back slowly and is too tired to make a full day, so she went from 9:00-12:00.

This morning I left her at school teary after a full morning of crying (followed by a three-hour crying marathon last night). She just kept saying that she was emotional, she was nervous about the schoolwork, and she doesn't have any friends (Kate is in her class, but that doesn't count I guess!). This morning she added how much she was going to miss me to her list of tear-starters. I lovingly said how much I love my time with her, but honestly told her that we are driving each other crazy being together 24/7 without a break for so long and we needed a change for a few hours.... no offense! : ) So she started the day a wreck.....and was all smiles when I picked her up at noon! She said she'd made seven new friends and she was so happy to be back at school. Oh, my heart!

We'll see how she is in the morning...hopefully we can have a repeat of today.

Oh, Cananda

O Candida, la la la la la laa. My witty comment now has the Canadian anthem (which our kids know as well as our own National Anthem from all the times they've watched Trav's games on tv) stuck in my head. No, not Canada...CanDida. Think yeast, thrush if it's in your mouth. Liz has it in her esophagus. On camera, and the pictures we have to add to her scope photo album, it looks like bits of cotton candy throughout her esophagus. Poor baby girl has stuff going on all throughout her gastro tract and tummy. The doctor says this is just another thing from her weakened immune system mixed, with all the bacteria she has staging war on her gut, and the antibiotics she's been on for six months straight. We don't want it to spread. She started on liquid Nystatin today, which is not a pleasant thing for anyone to swallow and taste. Another mind-over-matter task for her to endure as she must not drink or eat for an hour after swallowing the medication so that the Nystatin coats the Candida. She just can't get a break from all of this.

Her doctor called this morning to check on her and I was happy to report that after a rough night, she is doing better today as far as post-procedure pain and bleeding. Her poor bum is super, super sore and her throat hurts from the tubes and scope, but she hasn't had anything other than Tylenol for pain today, which is a positive.
Now we wait for biopsy results....



Today was a pajama day. The kids watched movies, made playdough animals, colored, played Sorry (long enough for them to end up in a fight, of course) ate candy as a pre-meal appetizer...and folded laundry. Liz told me she felt too tired to fold laundry, to which I replied it is a good thing a person can sit while folding laundry!

Understatement

Liz, half making herself relax and half tuning the rest of us out.


To say she is amazing is an understatement...Liz floors us with her strength over and over again. You'd think that after a decade of procedures, surgeries, pokes, pain and suffering, a person would just throw in the towel as far as attitude...but not my Liz. She never once said she wasn't going to do the colonoscopy prep or not cooperate with us. She doesn't object to our requests and tries so hard to show her strength. After 4 attempts at starting the iv today, her eyes started to fill and she was holding back her tears. I actually became upset (inside) and told her to not hide her pain...to cry and let us know how much it hurt. Her response was a simple, whispered "this makes me frustrated." How much of an understatement is that?!

The procedures went well, but her recovery is a bit rough and she is now on Morphine. Poor baby. Hopefully she will be able to fall asleep and sleep-off the initial pain and nausea.

We will get biopsy results early next week.

Please, please know that if you read this blog, I thank you. If you pray, I am grateful and know that we are lifted by every prayer.

Just Do It

This is a picture of a sister's love....



Kaitlin loves Elizabeth more than anything in this world, I think, and this picture speaks a thousand words. If you were here, you'd see that Kate has let Elizabeth have first-turn at the video game they are playing and is even holding her glass of colonoscopy-prep solution so that her hands are free to play. You would also hear Kate encouraging Liz to drink the stuff in her own, Kate-like way... "Just do it! How hard is it to drink something?! You just crashed the car, so now your punishment is to drink!" Tough love, I guess, but L-O-V-E for sure!

Plans have changed a bit. We saw the Long Beach GI doctor today and based on her increased pain, blood, etc, he took the emergency time-slot in the OR procedure room tomorrow and will do a clolonsocopy, endoscopy and biopsies. Liz just went through this in July, but she's doing it again. She amazes me with her will power and strength. In July she swore she would never allow us to put her through a scope again and here she is willingly doing the prep and facing tomorrow because she knows it must be done. "I'll just do it" she said tonight.

Her stool sample from yesterday came back as negative for CDiff. SO odd, but not crazy as there is room for error and false negatives do sometimes occur. She had another sample left at the lab today so we'll see what that shows when we get results from those labs tomorrow. Either it was false today, she miraculously is cured from the CDiff but has another issue causing the bleeding and pain, or a combination of both. The colonsocopy will help to determine that and also give us a picture of how her colon is looking. The Endoscopy is being done to check her Fundoplication and Para-esophageal hernia. We know she faces yet another surgery for those things, so as long as she is under sedation the docs will look at those.

She had a horrible time after the last colonoscopy with pain and bleeding, so I am asking for prayer for tomorrow. Also keep her in mind tonight as she goes through the very uncomfortable preparation.






A wonderful sign and balloons from the girls' Small Group at church. What loving kids to take the time to do this for Liz and Kate and what a reminder to my girls of how loved they are!
This came at the perfect time today as Liz was sad all morning and afternoon. She had a "best friend" at school last year and that girl moved to another local school for this school year. Liz called her today and the girl was very short with her and declined an invitation to come over next week. Liz was so excited to ask her over "when I am better soon", she said. The short phone call broke her heart. When she hung up with the "friend" (blah!) Liz said " I think she doesn't want me anymore."
I wanted to tell her that sometimes in life you learn who your real friends are, but I restrained. The "friend" is only 10 years old and Liz had a summer of having to cancel plans and not do fun things with her, so the kid probably has just moved on. Sad.
Anyway, the poster and cards and balloons came at a perfect time and cheered her. Thank you Miss Tammie and friends! We know who we're inviting to our "Everybody Needs A Pooper, That's Why We Invited You" party!

It's Time...

It's time.... at least that's what the doctors are telling me....
This morning I left a message for Elizabeth's Miller Children's Hospital Infectious Disease doctor, Dr. Michalik. Michalik is what most people call him, but Liz and I call him "Dr. Cute." Very, very professional! I wanted to let him know how Elizabeth is having more bleeding than she was, more pain, and a decrease in food intake. She is just not well at all.

Dr. Cute called me back late this afternoon and told me the following:
He spoke with the UCLA Infectious Disease team and they are recommending Liz have the fecal transplant. You may remember that the plan -even as recent as Friday- was to have her finish this current medication, Rifaximin, and if this failed then she would start a new drug called Difficid. Difficid has not been approved for use on children and it was only approved for use by the FDA in April. I learned today though that not only has it not been approved for children, it is currently going through clinical trials, so not even that has been completed. Given the seriousness of Liz's case, her doctors said that if she was an adult or even a child who weighed more than she does, they would try to come up with a dosage for her. Given her low body weight and the fact that it has never been used on a child, the team feels it is too risky to try it. So, we're left with literally no other option than the transplant. Her case is serious and the doctor said that they are worried she may become more serious (damage to her colon or intestines), so the process is underway.

I hesitate to explain what the transplant process will be because I don't have all the facts or plans myself. It has never been done at UCLA but there is an Infectious Disease doc there who has some kind of experience with it. Their team is meeting to talk about how this will all happen and the hospital is presenting it to the Ethics Board and such for approval. I have been told she will need to go through more scopes and testing. The donor must also go through testing to ensure that she doesn't carry any disease, which is especially important given Liz's weakened immune system. We've been told that Kate will most likely be the donor as she is healthy and given that they are identical twins, she has some markers that would help.

That's about all I know. I have been hesitant to go along with the idea of transplant, but knowing the conservative doctors are recommending it, along with how sick I see Elizabeth getting, confirms that it is the right thing to do. I just want some normalcy back for her. I want her to go one day, no, everyday, without pain.

If you see the girls, please don't talk to them about the transplant until I let you know that I have told them it is going to be done. They have known about the possibility and understandably it is an awkward, gross idea to them. Until the meeting with the UCLA team, I am going to hold off on telling them. Thank you.

Our prayers now are for wisdom for all the doctors who will be helping Elizabeth. This is a very big deal and I just want the team to be prepared and confident. I know they will. We are also praying Elizabeth hangs in there until the transplant...pain controlled and able to eat and drink enough to stay out of the hospital. Pray also for her to stay healthy otherwise so that her immunity be the best it can in the time leading up to the transplant. Lastly, we pray for her mental state as she is frustrated to still be sick and feeling worse, and sad to be stuck home. She misses school and I am driving her crazy by simply breathing the same air she does during the day : )

I am grateful for your support and prayer.

This kid

This kid.....



dreams of growing up to be....


this kid...


...He's on his way, hockey aside.
Jackson is so much like my brother it catches me off-guard sometimes. My girls and Jack have the same distance in age as my brother and I do. I'm not sure if it is that commonality that makes for the similarities or just how I remember Travis as a kid, but they are definitely similar. Jackson is so silly and he is lovable, for sure, but he likes to decide when and how he'll give you attention or show you love. He is the life of the party but also needs his "alone time".... I tell the girls daily to avoid eye contact with Jackson when he needs his space. : ) Jack loves life, loves to have fun, loves people and has decided to love hockey....sound like anyone we know?

***We love you and miss you, Trav. Have a great season. We pray for your safety on the ice and in the plane/bus. Start saving money now...Jackson needs a sponsor!

I don't know.....

I don't know what to do and I don't feel like blogging.

For one, I am doubting that people even read this anymore (which is fine... I probably would have stopped, myself).
2. I now have a folder so stinkin' thick of Liz's records, I don't need this blog to serve as a history for me. Shoot, her chart doesn't even fit in the chart-holder-thingy on the exam room door at the doctor's office anymore. It is left for the doctor to pick up at the desk and each time she enters our room, she says "I wondered who was here, we only have three charts this big!" Fantastic.
3. I am tired of writing crappy news about Liz feeling crappy from her crap, which in-turn is making our lives crappy! I want to write about fun, happy things.
4. I am finding it more and more difficult to want to stay connected to my friends. I don't even want to write; to blog. It is an irony actually. I really do wish to feel connected yet I feel an instinct to retreat into my own world. Mostly because so many yucky, negative things are going on and I don't want to come off that way. Also, Liz is taking so much of so many aspects of our lives that I really don't have much to say about other things and I am preoccupied with thoughts about her. Who wants to spend time with a girl who has her head in a fog, is undependable because her kid may need her at any moment, and doesn't have much but poop-talk going on in her life?!
All of that ends up to me not wanting to share.
But, I will covet prayer for my girl and I appreciate all the support, and I know some of you do read this and it is the only way you get day-to-day reports on her. So I will blog and gratefully, I will share.

Things with Liz feel like they are going downhill quickly. She came home from the hospital late Friday. Saturday started out alright, but she ended up feeling really sick as the afternoon went on. Sunday she didn't require the heavy pain medication and I took that as a huge positive. Yesterday, Monday, she stayed home from school as she is just so tired and her stomach was super "sore." Sore to Liz is equivalent to agony for most of us because she is just so tolerant and used to the pain. She spent the whole day in her school uniform, knowing she wasn't going. Sweet girl.

Today she insisted she was going to at least try school for a few hours. I spoke with her teacher and decided she'd go for the morning for the math lesson. I dropped Jackson off at his school and came home to get the girls to take them to theirs. Liz she met me in the driveway upset because she had just gone to the bathroom and had a lot of bloody stool. She insisted she was fine and I went along with her pleading to go to class. Against my better judgement, I let her go.She only made it 15 minutes before her teacher called to let me know Liz was in pain and needed to come home. 15 minutes! : (

I don't know what we're going to do about school. I feel a little better because I had a meeting (previously scheduled) today with the school counselor, psychologist, nurse, principal, Liz's teacher and the school's RSP instructor. This meeting was set to develop a 504 Plan- a legal document stating accommodations for Liz. In it things like her needing access to the restroom at all times and having assignments and time lines modified for her due to absences are listed. In Long Beach Unified, a student must be absent four weeks consecutively in order to get home teaching. Since her absences aren't guaranteed to be consecutive and since she is already missing so much and we won't wait around to see if she'll make the 4 week mark (who wants that goal anyway?!) we've come up with a plan for the present....
The plan is to set up a video camera in her class so that she can view tapes from home when she is absent. This way she is getting the same instruction that her classmates are getting.

I don't know what to do about this damn infection! I can see that this drug is not working. She is on day 8 of a 14 day course and her symptoms are not gone. While the other drugs didn't cure the CDiff, she at least had relief while she was on the other antibiotics and the pain, nausea and bleeding would subside. She had samples left at the Lab today, so we should have those results soon. Thursday morning we are meeting with the GI doctor and tomorrow I will speak to the LB Infectious Disease doc... he was off today and I didn't want to page him, totally my decision...I felt like someone in this picture should have a day off from talking about Liz's stool! : )

I don't know what to do to prepare....for anything! I feel the need to get the house perfect in case we end up inpatient and someone else needs to step-in and help with Kate and Jack. Perfect is a strong word, more like the laundry all done and a stocked kitchen at all times. Most women keep a bag packed only in preparation for a rush to the hospital to deliver a baby....I now keep one packed in case we have to go to the hospital.

I don't know what to do. I am trying to use my instincts mixed with knowledge, but I don't know what to do about so much right now.

Nowhere but Home

We are home!!! And, as if life knew I needed my spirits lifted, it is a cloudy, rainy, Fall-like day. I have my spice candles burning, nowhere we have to be, and kids snuggled in blankets. Perfect!!

The pain medication is doing its thing and the fluids Liz got at the hospital helped perk her up, for sure. The docs decided to give her an extra bolus before we left and she was up to eating something after that.
She was discharged with orders to return if she needs more fluids or the pain isn't manageable. The doctors are hoping she needs to get over this "hump" and allow the new medication to work on the CDifficile. How many times have I heard that before?!
I do understand though that there is nothing more to be done right now for the CDiff. We are literally at a stand-still while we wait to know if this is the drug that will finally rid the toxin. The ID doc here is going to speak with UCLA to come up with an offical plan as to what happens next if this drug doesn't work. We'll either try the brand-new drug that has not been tested on children or she'll have the transplant. In any case, it needs to be decided now as the transplant preparation is a huge process.

The doctors spoke to me last night about what will have to happen if she isn't taking in enough fluids or nutrition, or if her stomach can't handle food. She is having pain and nausea after eating;a result of her colon and intestines being so inflamed and infection-filled because of the CDiff.... food exasurbates this. If she is unable to eat, she will need to start on TPN - total parenteral nutrition- nutrition delivered through an iv or catheter. She isn't a good candidate for NG feeding (through a tube down her nose, into the stomach) because that would involve her having to process the nutrition. We DO NOT want to start TPN. That is a road that is hard to get off and comes with its own risks. Even with all her GI issues since birth, she has never had to be on TPN, I don't want to start now. Still, it had to be discussed.

This "hump" is part of the infection progressing. I think she also did too much with going to school full-day for two days. Her body is fighting hard against the CDiff, she also has had the respiratory virus going on for a week which would make any of us tired, and she is anemic. All that, plus not drinking enough, added up to feeling pretty bad and needing the hospital. As soon as the pediatrician saw her yesterday in her office she said "You guys are going to the ER!" I probably should have taken her straight there, but denial and stubbornness can cloud my decisions sometimes.

I don't know about school for her next week. She is so happy there and it is important for her to be "normal" in all ways possible, while keeping up with her studies. I think we will see if she can handle just a couple hours and go from there.

Anyway, we are home on this ugly, beautiful overcast day. Nowhere we need to go...nowhere I'd rather be.

Again

Elizabeth is back at the hospital....her abdominal pain is worse and her nausea and shakiness is too. She's on pain meds (a big deal because she never is on pain meds. It tells us how bad she feels : ( ) and is being given iv fluids. Both have already made a difference.
There is nothing more they can do for her for the CDiff right now. It is all about pain control, managing the nausea and giving her the antibiotic to hopefully finally cure the infection. Dehydration is an issue. She tries to drink but one can only take in so much when you are having so much nausea and stomach pain. Eating makes both worse and she has lost weight in the past week. If she isn't able to take in enough we will be forced to start TPN (feeds given thru an iv or catheter). We don't want to go that route.
Tired. Exhausted. Again. Wishing this would stop.

Dooooon't say first day!

Dooooon't say first day. My brother Travis used this expression one year on the first day of school and it has stuck in our family since. I smile every "first day" as I think of that and can hear Trav's raspy, little-guy voice. I sent Travis a text this morning with the following picture of the kids and "dooooon"t say first day!" as the memo.... and he replied with "I still hate first days".... and he has many of them as he's traded from team to team or moves city to city. That made me smile too, Trav.

What a big day! Jackson was off to his first day at a "real" school and the girls are the big kids on campus as they started their fifth grade year.

We were unsure if Liz would be able to attend school today. Not only did she attend, she lasted the whole (Minimum Day schedule) day. She said she was going to ask me to come get her around 1:20 because her stomach hurt, but she decided to make it to the 2:00 bell.
I have to tell you how much easier it is to send her to class when she is not well because I know she has a wonderful teacher. Ms. Bonetati happened to teach first grade when the girls were that age and she was their teacher that year. Liz had just had major, major stomach surgery and returned to school recovering and eating only baby food. I was a nervous wreck, but having Bonetati proved to be a perfect match. She was (and still is) caring and watchful, but not dramatic at all, and she is sure to not single Liz out or draw attention to her "special tummy." Liz can be drama when it comes to all things girly but when it comes to her health, she wants no extra attention and surely would like her classmates to have no idea she may not feel well.
Ms. Bonetati has become a friend and she knows of Elizabeth's situation. That crazy, kind lady wrote the Principal and offered to have Liz in her class this year, going further and saying she would help Liz catch-up when needed and even visit our home to help her during times she is out for longer periods. This is a huge blessing because, frankly, the system is crappy. In Long Beach to get home instruction, a student must be out for four weeks consecutively. Anyway, Ms. Bonetati is a perfect match and I am happy she has both Elizabeth and Kaitlin in her class this year!




My partner-in-crime...or partner-in-love. I never knew what it was like to have one child because the twins were my first. Having Jackson the year the girls started Kinder gave me plenty of alone time with my little man over the years. Oh how I will miss my fun time with him. Who is going to play cars with me during the day?





I had tears. Jax had a smile. He said "let's do this!" and waved goodbye.




Last year on the first day of school....



......and this year.....



Here's to a fantastic fifth grade year, girls. I can't wait to see how you grow this year....just try to slow it down a bit, my mommy-heart can't handle too much 5th gradeness all at once.

Bummer Summer

The girls have a tradition of getting their nails done the day before each school year begins. As they've gotten older they've gone from a nail polish change to full-on mani-pedi's. This year, excuuuuse me, they chose to sit in the spa pedicure chair. Well then.
Today Liz felt well enough for the tradition and even a trip to the pier. Though she didn't eat dinner or ice cream, it was wonderful to be out together as a family, enjoying the last day of Bummer Summer 2011, before the chaos of the school year begins.







Waaaaaayyyyy better than the hospital.




Our last day of "freedom" ended with a trip to the pier for dinner and ice cream.






Goodbye Bummer Summer. You were full of bad things....but ironically, we'll miss you. Hospital stays and pool-ban days, Elizabeth's fatigue, canceled play dates, vacations that never came to be, and yucky days... gave way to lots of time spent together at home, lazy and close...and that was good enough for us. I will miss that over the next 9 months.
Elizabeth is going to give school a try tomorrow for a couple hours. We pray she'll do well and enjoy the day.....

Mom to Mom

Last night I used the word devastated to describe how I was feeling. I was devastated. Minutes after I used the word I thought of a couple of people who I know are experiencing unbelievable pain and I wondered if "devastated" was appropriate for describing my sadness and frustration.I wondered if I should have added an aside...."this is devastating, but not as devastating as losing her would be." Or "not as devastating as if she had cancer." Devastated was how I felt, so I let the statement stand.
Soon I received a message from a brave,amazing mom that read "I understand your panicked feelings. It is just the most awful thing to watch your child be sick and have no control. Just know you are not alone, even if it feels that way."
I was struck.
Struck by the way only a mother of a sick child can fully understand how helpless one can feel. Panicked is the perfect word. I would walk a million miles with Elizabeth in my arms or on my back if I knew I could get to someone who would finally fix her. I would find any amount of money or do any favor to know that she would never again be sick. I would beg, even steal to fix her, and the longer this goes on I am left feeling panicked.
I was struck by the way this mother knows that though I can be in a crowded room of caring people, or have Walter beside me or even have the prayers of many.... the weight of Elizabeth being sick sometimes can feel so very lonely.
Most of all, I was struck by the compassion that this woman was showing me during a time she is facing true devastation. The worst, most painful devastation one can imagine.
Ani, thank you for taking the time to pray for Elizabeth. Thank you for writing and even in the midst of your unbelievable, unfair, heart wrenching loss, reach me with the words you knew I would understand..... mom to mom.

*Ani is honoring her sweet baby Ruby Jane by working hard to save lives. If you have not done so already, please register to become an organ donor at www.donatelife.net

5 months...and more

I am so sad. Could things be worse? Absolutley. Is Elizabeth dealing with a five month-long nightmare? Yes.

Her little tummy can only take so much. CDiff aside, she still faces another major surgery and all of the other GI and immunity issues she has going on in that body of hers. Still, ten years of stomach issues, six surgeries and more procedures than we can count seems to pale in comparison to the past five months of this infection.

I have avoided tears for a while. A strange combination of hope, will, determination, and the fear that if I started crying I may not stop, has kept the tears at bay for a while. Last night though I lost it. I stood in the bathroom, holding the hemmoccult cards in my hand and I sobbed. Walter came in and hugged me and then asked me to stop crying....I did not. I think my weakness to give into the tears was a mix of fatigue, worry, frustration, and the fact that in a three hour time span I'd dealt with Katilin's dead fish, a lizard in the house and a bleeding Liz. Sounds like a horrible country song, doesn't it?

Liz has been off the antibiotics for 12 days now. We had differing opinions from the doctors about starting a new drug, so we opted to wait to see if her body would recover on its own; if her healthy bacteria would overtake the toxin. It did not. The infection has raged-on and is now causing the bleeding, cramping and pain that is a sure-sign it has also caused colitis.

I spoke with the ID (infectious disease) doctor here this morning. He said "it was only a matter of time" before this happened, given her symptoms last week. I wanted to ask him if he prays because "only a matter of time" doesn't exist where miracles are concerned. In any case, he told me that he had spoken with one of the ID docs from UCLA and they agree on a plan. She'll start on a new drug immediately, for a 14 day course of treatment. If this drug doesn't work, we'll go to the newly-approved by the FDA drug that has not been tested on anyone under 18. Fantastic.

If that drug fails, we would go for the fecal transplant. Some of you have written and asked why the transplant isn't being done now. The answer is as simple as it is complicated. Fecal transplants are done in Europe, but rarely done in the States. It is not as though we are at a small-town hospital. Liz is beng treated at a large and a major medical center and neither have performed a fecal transplant....that isn't a coincidence. For as simple as it sounds to perform the transplant, there is still great risk involved.

The doctor suggested I consider having her admitted today for observation. I did not. His biggest concern is her fluid intake. If she doesn't drink or if her fever remains or she gets extra sick-like, I will. Oh how my way of assesing how "bad" she is has changed.

So that's it. More medication, more waiting, more praying.
If you pray, please do for Liz. Ask your friends to pray. Ask God to help her.

Never Lose Hope

This afternoon Elizabeth went through some of her school things from last year. She found this name tag. A substitute teacher had the students write their name on the front and draw something of their choice, and then on the backside they were to write their own "personal motto."

Elizabeth Claire Noel, who's motto is "NEVER LOSE HOPE!"

*As if this picture wouldn't make me smile on its own.... I want to always remember that this sick, slobbery, runny-nose little girl made me wait to take this photo until she put a bow in her hair for it. SO Lizzie.

Nightmare

Quick update for those who are aware of Liz getting worse last night....
Her temp went up to 102.8 and I spent all night next to her, trying to decide if we should go to the ER or not. It has been drilled into me that if she gets a fever, we need to "act fast" rather than let an infection brew. With her symptoms being more of throat, chest and nose I knew the fever wasn't coming from her abdomen alone. So, I decided to try and treat her like I would Kaitlin and Jack and wait it out until morning. The ER is something we'll avoid at all cost.
She tried to sleep all night, but was just too uncomfortable and too hot. She would start to fall asleep, but then wake crying or talking in a way that didn't make sense. Tylenol wasn't cutting it, so finally at 3:30am I decided to risk giving her Motrin. Her last platelet counts have been lower than "normal" but not too low at all, so I felt that giving her the Motrin once was safe (no more though. The doc told me this morning not to do that again. Blah!). It worked to bring the fever down a bit and she finally fell asleep about 4:30am. Poor baby girl.

We got to the Pediatrician's office by 9:00. Her Strep test was negative. It looks like she has the start of a sinus infection....a nightmare. She cannot be on any antibiotics right now that are used to treat infections (the antibiotics used to treat CDiff are different than those used to treat pneumonia, sinus infections, bronchitis, etc.). The pediatrician called the infectious disease doctor and they added a mix of medications and breathing treatments to try to get (and keep)out all of the mucous from her nose, throat and chest. We left with 3 more medications and 2 more breathing treatments added to her medicine arsenal. She is showing signs of dehydration, and I think she got the message loud and clear that if she doesn't drink, she's being admitted again.
The next few days will be telling. Pray that she recovers and that she doesn't end up progressing to the infection that would leave us no choice but to treat with an antibiotic.
I thought the doctor's use of "nightmare" was fitting considering I used it just yesterday. This does feel like a never-ending nightmare. Last night Elizabeth asked me "are you telling me God planned for this too?!" It is getting more and more difficult to let my facial expressions do the talking when she voices questions and concerns that I have no other answers for.

Her stool has also changed a bit today. I pray it is just in response to the meds or virus she has going on right now and not the Cdiff progressing, too.
We are keeping her on Zofran 'round the clock now so that her nausea won't get in the way of her getting fluids in.
This all feels like a nightmarish game....adjusting meds, using risk vs benefit to decide how to best treat her, and trying to keep track of it all.

At the doctor's office, she was laying on the table in the room with the lights off while we waited for the doctors to talk. She looked at me and said "Aren't you so tired Mama?"
Not as tired as you, my Liz. Not as tired or as tolerant as you.

Tight Rope

We are walking the tight rope in the Noel house. Actually, I feel as though I am carrying Liz across it....

Tonight I received a call from one of the Infectious Disease doctors at UCLA. This doc is kind and patient and hangs onto each word I say....something I am learning must be a prerequisite for ID's because they all seem to have those in common.
Dr. N. was calling to update me on a few things.
First, the UCLA lab was unable to process ELizabeth's stool sample from Monday. Nothing like being told that on a Friday evening from 30 miles away. He did some research and thinks that Memorial can do the same "CDiff by DNA" test, so I will have that done on Monday, hopefully.
He also let me know that he has been "contacting other institutions" to find if any have done Fecal Transplants. This way, if it is determined that the transplant is the best option, we will have something in-place. UCLA is willing to do the transplant, but it would be the first choice to go with a team that has already performed one.
Liz has now been off of antibiotics for the CDiff for 10 days. So far, though she has cramping, pain and abnormal stools, she has not had bleeding. This is a huge thing I am clinging to, praying and hoping that her body is beginning to at least fight-off the toxin using her natural bacteria and flora in her gut. We are riding a fine line of watching and waiting. We want to give her body a chance to fight for itself; to show that her gut can restore itself and overtake the toxins...but waiting too long to act again (if needed) with either antibiotics or the transplant could put her right back to the stages of Colitis and hospitalization. SUCH a tight rope. As I looked in on her napping today, having just gotten off the phone with the doctor I had a feeling of "this is my job. I can take care of her better than anyone and it is my job to help her get well by following directions, asking questions and physically caring for her."

I am glad the Infectious Disease doc called because when asking how she was I reported that she is sick with a fever, sore throat, congestion and chest pain. He told me to stop her nasal spray immediately, as the steroid in it can alter the mucous lining in her nose, effecting any virus she may have. How in the world would I have known that?! Liz being sick is another tight rope...she cannot be on an antibiotic right now. The antibiotic used to treat the CDifficile is different than antibiotics we take for bronchitis, pneumonia, strep, etc... those antibiotics can give a person CDiff and for her, having CDiff now, it would be a nightmare for her to be on one. She has had all of those things in the past year, so we are praying this is just a common virus and stays simple and goes away quickly. Again, this is where her weakened immunity comes in. Such a cycle.
She feels pretty awful tonight and I am sad she has to have this on top of her CDiff symptoms. Hopefully she can rest this weekend and then feel well and strong for her first day of school next week.