Day 9

Day 9...we are still here. NG tube still in, night feeds still happening...still here. Lord, give us patience.

Liz had a visit from sweet Lola, a therapy dog who visits the patients.

Jessie sent a yummy Edible Arrangement. Liz squealed and would absolutely not share her cantaloupe or strawberries with anyone. Thank you, Jessie!

Field trip! The hospital made an area out front that looks relaxing. It sits on a teeny hill, so the water features and koi pond aren't visible from the street. I had no idea the pond was there.

I tried not to reflect on how badly I just want out of this place.

Searching for Koi

We saw a nurse taking pictures of something in the tree three days ago. After we investigated we found this tiny, tiny nest. It really is so small.

The nest sits precariously on the branch, so we didn't want to move the branch at all. Yesterday, though, I thought to take a picture looking down at the nest. I stretched my arm high, shot the picture, and we were excited to see that there are eggs in the nest!



Trying to remember this is but a season.



Tonight

Elizabeth is still in the hospital. There is much to explain about what is going on with her, but I just don't have it in me tonight. Tonight all I can think about is how much I want this over; how much I want my little girl to be well. Tonight I cannot stop the tears as I am overwhelmed by how much this all has effected my family and my marriage despite how determined I have been not to let it become a part of our lives. Tonight I long for the life I had when I dudn't stay up worrying about how my child would become well- of my baby would ever be well. Tonight I just want our life back. Two years of wanting our life back to the way it was.

2 or 3?

   This hospital wing sounds like you will get sick by just breathing. Coughing, coughing everywhere.... as anresult of RSV patients surrounding us. Luckily, Liz has an ordered private room so that she isn't sharing space with another patient. She is not walking the halls or going to the play room and we put a mask on her when we make the quick dash to the garden for air and a chance for her to stretch her legs.
I have a couple handmade signs hanging around her room and this one, on her door, so that each and every person who enters will wash their hands before entering. I am a germ freak these days, and make no apologies as I will do anything to reduce risk of Liz getting an infection.

Speaking of the garden, today I was able to spend time with my big little babies out there. My parents brought my Kate and my Jackson to see me! Jax has cried each time he has seen me on Skype and at the mention of my name, so we knew it was especially important that I get time with he and Kate....and I loved every second of it. We were able to play a game while sitting in the sun and afterwards, raided the vending machines in the lobby. I miss being home as a family more than I can express.

Liz is doing alright. It is strange how she is so sick, but ironically doesn't have many of he awful symptoms that other hospitalizations have brought.
She still has the NG tube in and her feeds, given from 10:00pm-4:00am will continue tonight, and actually have been increased in calories. She is now taking in 800 calories through the NG tube feeding.
We are waiting for her to begin gaining some weight. Impatiently waiting.

The docs are using her intake/weight/calorie counts to determine what category she falls in to as the reason she is not gaining and malnourished. Here is a weak attempt at repeating what the GI explained to me:
Category 1- someone who does not gain weight because he is anorexic; either by choosing not to eat, not having an appetite, or because anatomically eating is difficult.
Category 2- someone who does not gain wait because of a metabolic/absorption issue. Food goes in, but does not get used correctly. Like a gas tank with a hole in it. You fill the body with food, but calories are not being used.
Category 3- someone who does not gain weight because she has a primary illness or disease that prevents or effects weight gain and absorption.

Liz is either a 2 or a 3. Determing which she is will decide how she will be treated (G tube, TPN, neither...).

So, the Nutrition Team counts and counts her calories, 800 count tube feeds are being given, an appetite stimulant is at work, and we encourage her to keep eating by mouth.... and we wait and pray that the scale each morning will show a gain.

Update

It is hard to believe we have only been here since Tuesday. I am already sick-tired from lack of sleep, tears from missing my babies at home are harder to keep from coming than they were just two days ago, and even Liz's IV had to be changed today- a sure sign that the days are passing.

Feeling sad about our time here was made a little more difficult by conversations with doctors today. Our Pediatrician let me know that from all the physician's notes, the plan for Liz is uncertain and ever-changing, which to me let me know that we may be here longer than expected. Then, Dr. Steinmetz- the GI covering Liz's care for a while- talked seriously with me about the need for us all to be patient (even the doctors) while they all try to determine the reason for Liz's "severe failure to thrive"....in easy terms=the reason she cannot grow anywhere close to how she should and why her body is so malnourished. We definitely are going to be here longer than we thought. In fact, Liz has lost weight and not gaining yet during this stay.
For the first time ever, a G-tube is being talked about as a possibility ( a tube inserted through an abdominal incision, into the stomach for long term nutrition). Ugh! This is another one of those things that in my mind through the years I have always thought of as "at least Liz doesn't have a G tube!"
It would not be the worst thing ever, but it is something I don't want to do unless we have no other choice.
The PICC line is still on the table, but after the doctors had a meeting, it now sounds like it will be a PICC for TPN or a G-Tube and they want to decide what the reason for the weight issue is so that they know which option is best.
I think some of you may have the impression that I am scared of a PICC. I am not afraid of the line itself (though who wants that for their child?!), but I am absolutely afraid of the risk of infection that comes with a PICC line. Remember, if Liz gets an infection, which can easily happen with PICC lines, she would need an antibiotic, and then, almost assuredly, she would have the CDifficile flare up. ALL the doctors are afraid of this for her, in fact.

We are in a wait-and-see...what else is new?! She still has the NG tube in (her nose, down to her tummy) and is getting formula feeding through that from 10:00pm-4:00am. We will hope for a weight gain and to see how her stomach tolerates having the higher volume in it. Last night she got very nauseous about 45 minutes after the feed started, and we are wondering if it was a sign that her stomach cannot handle that much. A key bit of information and treatment plan factor is if the nausea was truly from the feed. We'll see how she tolerates tonight's tube feed.

I am praying for an uneventful night. Last night was another loooong night. Liz was nauseous; the iv fluids make her pee endlessly it feels so we are back and forth to the bathroom; and when I finally got her settled in for sleep, she had stomach contents come up and out of her tube and it got all over her and in her hair, so I had to bathe her. We didn't even get into bed again until 12:30am.
So looking forward to sweet sleep.

A bright spot in the day was a chance for Liz to mask-up and go to out to the garden for some fresh air and sun. We were like two cats, soaking in the rays and the breeze. Such a nice break.

There have been other bright spots too.....

Like..... music therapy with the amazing Laurel. Even with an IV and board on her strumming hand, Liz practiced and had her first smiles of the day. Laurel is F-U-N!

After Liz got sick last night, our nurse- knowing how much likes Nurse John- called him and he came in on his day of (!!!) to do magic for her. She requests John during each hospitalization and she gets joy from his magic shows and his kindness.

"Are you ready for the trick, Lizzie?" Already in giggles!

Tutti Fruitti was the magic word.....

Liz's look of amazement. John was a wonderful distraction.

               Here's to a better night. I will write more tomorrow about what the doctors suspect may be the primary issue of Liz's weight/nourishment problem. Please know how much I appreciate prayer for my sweet Liz....and please keep praying.

Classy and Crappy

Life can be crappy and today was a crappy day. Literally. Not our most classy art piece ever, but it is true that tulips smell better than poop. Even the classiest lady would agree with that!

True, true, true and true!

I feel the need to make Liz's room as un-hospital as I can. I have done this since she was an infant and I refused to put her in a hospital-issued tee and instead would dress her in sleepers and onsies from home, having to cut the clothing up the side so that the clothes could be removed even when she had an IV placed.
I am not alone in this. I often see other mamas doing the same- using crib bumpers from home, or hanging curtains, or even bringing in mini fridges.
It is a natural instinct for some mothers to have an urge to nest; to make their child's hospital room as familiar and comforting as possible. I absolutely have that urge each and every time we are here.

Jill Rub- look what is hanging from the ceiling? Two butterflies came to her window today that were the same color as this one.

Looking so old as she reads a magazine full of fashion, sent by sweet Allison. She also received bracelets that she said were "rich" and asked if the hospital had a safe to keep them in! Do you love it?! She was dead serious. Because I have so many jewels and she hears me requesting safe storage when we are at a hotel or here in the hospital. Or not!

We are exhausted. Liz was up all night running to the bathroom. Finally we started using diapers, but even then it was constant. Each time I would get her cleaned up and settled, I would sit down and literally it would start all over again. For twelve hours she suffered.
Thankfully, her difficult time was "rewarded" and an xray confirmed that she is totally cleaned out of all the impacted stool she was full of. Poor baby. Other than tummy pain, she did not complain one single time during her horrible clean out ordeal. In turn, I couldn't complain about my exhaustion or frustration- she is so inspiring!

Now that she is cleaned out, her NG tube feeds will begin. Each night, it will run from 10pm-4am. During the day we would like her to eat by mouth. Once the feeds start tonight, the plan is to be here for 3-5 days and watch how much weight she can gain as well as how well her stomach can handle a 2000 calorie diet.
Dietary wants her to gain 10 pounds within a month, which would put her at the 50% BMI for her age and height. That seems like a huge expectation, but it is necessary for her to get to a safe place, they say. We'll see.

More to update, but ready to sleep, as I didn't get even ten minutes of rest last night or today.
Please keep praying. She is going to get so strong!!! 

"How could you let them do that to me?!"

About 20 minutes after having the NG tube placed. She is just amazing and so brave. I would have a difficult time
accepting the thought of having a tube put down my nose and throat, and being fed down into my stomach while unmedicated and wide awake. She did it, though!! I rarely cry in front of her, but after the placed the tube, I did hold her and cry. A mother's heart can only take watching her child in pain for so long.

After a couple hours, she is talking again and even has a few smiles. The tube going down her throat is super
uncomfortable, but she is doing well with it now. Mind over matter, strong girl.

Many things with Elizabeth's health should upset me very much, and while of course some things do, seeing this
IV set-up rolled in for Liz today made my heart sink. It sounds silly to most, I suppose, but this simple machine is huge to me.
For years, I have told myself that even with all of her GI surgeries and issues, at least she doesn't require feeds
(through tube or line)... and now she has one. Temporary, I keep reminding myself.
The GI team talked about Liz today during a meeting. The plan for this hospitalization- from a GI standpoint-is to
insert the tube (check), start a clean-out (check. the magnesium citrate is running in a crazy amount. This is to clean her out because
she is impacted with stool. Exactly like a colonoscopy prep, but on overdrive, so to speak. It is going to be a long night.),
she is NPO now (nothing to eat or drink) until she is cleaned out. Tomorrow night they should be able to start feeding her through the
NG tube. They will also give her lipids and a cocktail of other nourishment through the IV. That will run for a few days, and she should gain some weight. I heard from the GI doc that Infectious Disease has agreed to putting in a PICC line (stands for Peripherally Inserted Catheter. Think IV inserted into a deep vein.) being put in so that she can go home and get TPN at home for a couple months. I haven't seen the Hem/Onc team yet, but Pulmonary visited and she will have a Pulmonary Function Test while she is here, too. That is easy!
Pray for our girl tonight as the clean-out kicks in and she experiences a night of cramping and running to the bathroom. Here we go again. Yikes!
Also pray for her little spirit- she is afraid to sleep because she thinks she will pull on the tube and yank it out of her tummy. Poor thing.
Grateful for the prayers and love for our Liz. You would be so proud of her!!
Let's do this thing, Lizzie- show us how you are going to get big and strong!!!

Tomorrow instead....

For those who are praying for Liz and have not heard- she was not admitted today, and will instead be admitted in the morning. Last week when her GI doc decided to admit her, he forgot that today was a holiday and the physician covering the hospital over the weekend would still be on-call today. He doesn't want the on-call doctor caring for Liz in this case and so made the decision to have us hold off until tomorrow.
Liz was overjoyed with the news and I was happy for us to have the day home, especially since Kate and Jackson are home for the day. Also though, it was a terribly long night with Liz being teary and nervous about today's plans and I am dreading that happening again tonight.

So, tomorrow it is....

Ball

Our church has a big, wonderful children's program and hosts many special events. Friday was the night of the
Father/Daughter Ball. Walter was excited to make the evening special for the girls and started by mailing them each a card, inviting them to be his date.

Liz's invitation

Walt has always called Kaitlin "My Kate";she and her daddy are very much alike, actually.

Walter thought all on his own to call and order a wrist corsage for the girls.

Reminding them that a gentleman should open the door for a lady.

Dinner out and then on to the Ball. They had a very special night and we were all so happy that Liz had the weekend home before being admitted so that she could attend as planned.

Tomorrow

Tomorrow we will head to the hospital for Elizabeth's admit. Two suitcases, two computers, two ipods, three pillows, three blankets, a butterfly to hang, a Glade air freshener (you know we have been there too many times when we take a darn air freshener!) and a handmade sign by Liz stating "Have You Washed Your Hands Before Touching Me?" to hang above her bed (those nurses and docs forget many times), among other things.... we are ready. And still, I have the usual mix of nerves and hesitancy I get before any admit.
Pray for our girl- she is terrified to have the NG tube inserted, as she is not sedated during the procedure. That alone would make me nervous, so I cannot do much but assure her that she can do this. I pray too that she won't be too uncomfortable during the days we are there and the tube remains in-place.
Elizabeth does not know about the plan to place a line or for her to come home with the line in and for TPN to be part of her treatment. She has heard that she will be getting TPN but has no idea what this is. I am always honest with her about her care plan, but I think the thought of the NG tube is enough worry for her and I have decided not to explain TPN until we have been at the hospital for a while.
Pray also for Walter and especially for Kate and Jackson while we are away. Because life just isn't easy sometimes, in a twist of irony, Walter returned to work today after being off for eight days. How much easier this would be if his vacation was this week instead! Jackson and Kate miss me while we are at the hospital and their routine is thrown off, of course. Kate doesn't voice it much, but I know having her twin gone and knowing what she is going through makes her anxious. If you see her around, please give her a smile or a mommy-hug. She is shy and reserved (sometimes!), but she does report when people say hello to her, so I know she appreciates it.
Grateful for medical care, and support and prayer. Overwhelmingly nervous about going through with all of this, but ready to get my girl strong again, so holding onto that. Let's do this thing...Lord please let me know this was the right decision.

The Deal

Here's the deal... we have no choice but to admit Liz; On Monday , she'll be a direct admit to the hospital. At least being a direct admit allows us to avoid going through the ER. And, going in on Monday rather than Friday allows me to get things settled here and for Liz to attend a special event with Walt and Kate that she has been looking forward to.
When we got in the car after meeting with her doctor and hearing his plans, I had the feeling of overwhelming burden, and I had an impulse to run- not to any place or anyone, just to run away. Today, I feel like I have my game-face on, and I am in a place of making lists and organizing things for the week ahead. It's amazing how our minds work to allow us to get through difficult things.

Liz will get an NG tube placed when we get to the hospital and this tube will remain in her nose and down her throat into her stomach for days. The GI doc feels it is important to use the NG tube for a few reasons-
1. Liz needs to gain weight . An NG tube will allow Liz to be fed a formula that will mimic a full-feed that she should be taking in by mouth (how we eat), and by having the full amount of calories and volume in her, the docs will be able to see if her body can even handle the amount she should be in taking. They suspect that Liz may have a metabolic issue and using the NG tube will help them to know if her body is capable of breaking down nutrients and using them as they should be.
2. Liz is impacted- on xray, her colon is literally visible in her chest cavity because it is so full of stool. Liz has a problem with motility and using the NG tube will allow mag citrate to be given to help clean her out.

So, she'll have the NG tube in, and we know she will gain weight. But what about what happens when we come home? She is so behind and so malnourished, days of an NG tube will absolutely help her, but she needs more than just the tube. So, the plan is for her to get a line placed. This line is semi-permanent iv access, and through this line, she can get IV nutrition, called TPN. She will have the line in for at least a month and we'll be able to feed her through the IV as a supplement to her eating by mouth. She will be able to come home and we'll have home health visit the house when needed.
I have wanted to avoid TPN since it was first mentioned many, many months ago. Liz's GI is very conservative- meaning  he  doesn't like to medicate or admit- but in his words, this has gone too far and it is serious. Her Prealbumin is too low and he feels uncomfortable not intervening. There will be another meeting with all specialties- Hem/Onc, GI, Immunology, Pulmonology, Infectious Disease- to talk about Liz, so I know that everyone will be on the same page.
I am terrified, as this is yet another circumstance when I feel like I am authorizing a medical decision that has many risks, but I have been reminded that actually, not intervening with the treatment is risky. She is just that sick.

So, there's the plan. Monday it is. I hate the hospital....have I said that yet?
Tonight, you can please pray for Liz's headache and fever. Also, for her mind, as she is aware of what is coming and she is very frightened. Thank you.

Fun

Walter has been on vacation this week, but we haven't seen much of each other as he has been home working on projects (cleaning out the garage and painting the kitchen/entry way) and I have been busy with many appointments for Liz as well as a couple meetings. Finally, we got some time together today.
In the early afternoon, we saw a movie (thank you, Katie, for having Jackson over for play after school) and tonight, my sister watched the kids while we went to an early dinner.
We saw a violent, action, bloody movie that was Walt's choice and dinner was at Morton's (we had a $100 gift card), which wouldn't be on my list for a restaurant pick, but after nearly 12 years of marriage, I know that by compromising, I am more likely to get a great massage....plus, the guy had a root canal yesterday and painted, so he deserved it.
Anyway, it was a great day and I am happy we had time together.
Last night, I was kidnapped by a couple of girlfriends for dinner. It had been penciled in on the calendar and no matter what, they were determined to take me away for girl talk and laughs. We got to the restaurant at 7:00 and we didn't leave until 11:30! The place closed at 9:30, and we talked over the noise of clean-up and even the vacuum, for goodness sake. Girlfriends are such a gift in life and man, even though this journey with Liz leaves me often feeling incredibly alone, I am just lucky to be surrounded by women who keep it real, lift each other up, and laugh like little girls.
Such fun.

I cannot wait to tell you about something special that my girls and Walter are doing tomorrow! Looking forward to sharing in another post. While they are doing their thing, I will be taking Jackson out on a little date; I always look forward to time alone with my little guy.

Tired

Sleeping Beauty after IV Benadryl kicked in. I think she should have shared with the rest of the room...some for Liz, some for mommy. As it turns out, her nap only helped to energize her for the hour and a half-straight whine fest that followed. The sweet, exhausted girl is tired.....physically and emotionally.


I am so, so tired. Have I written that a hundred times before? I'm exhausted. If there is a word past exhausted, I am that too.
It is a good thing we are in a cycle (of insanity!) because my body is only running on auto-pilot and I am just going through the motions of the cycle. Doctor's office, hospital, radiology, lab, Infusion Center, repeat. Thankfully, life goes on and there are normal things thrown in too. School, volleyball for Kate, errands. Sometimes a play date or meeting or visit with a friend will sneak in and snap me out of the cycle, but for the most part I have become a hamster on a wheel. 'Round and 'round I go.
On Monday, I helped Liz get to the bathroom with her IV pole while at her treatment. I started washing my hands and instantly, I felt like I was going to throw up. The smell of the hospital soap has been a scent that triggers memories and emotion, and out of the blue, the very smell of it can make me sick. I slowed my breathing so that I wouldn't get sick, and then held my breath until Liz was done washing her hands.
How did we get here? Why are we still here?!

Monday was our long, six hour day at the hospital for Liz's treatment. There was a bit of an issue with the orders and the nurse had difficulty starting Liz's iv, so we didn't begin treatment until two hours later than scheduled, which meant we were in the Infusion Center from 9:00am-5:00pm. Elizabeth began whining and talking back at hour two, demanding to know how many minutes we had left. Minutes?! We hadn't even started the IVIg; we had hours and hours left. She can be so tolerant and so patient, and then she can become so angry out of nowhere at times. She threatened to pull out her IV (none of this was said or done in front of the nurses, of course. She is an angel with them). I worry that one day she really is going to pull the IV, as my threats of what could happen if she does, no longer have an effect because, well, after the hundreds of sticks she's had, she is probably perfectly capable of taking out an IV. About halfway into treatment, she asked me if the room was shaking, and then became afraid because, to her, the paint was dripping off the walls. So odd. Other than nausea, headaches, body pain and fevers that come along with and in the weeks after treament, she has not had a reaction during any treatments before Monday. The doctor was called, meds were given, and within minutes, she was better. Once the IV was finished running, we headed over to Radiology to get xrays done because of her abdominal pain. Of course, the films show that she is impacted yet again.
Such a long day. Thank goodness for amazing and kind nurses, and for a strong Elizabeth -who, after her whining, apologized and was back to herself. I reminded myself about a dozen times that day how lucky I am to be able to spend so much time with my sweet girl; time I wouldn't normally have with her if she was in school.....if life was normal.

There have been many, many calls from the doctors over the past few days, but I will spare you.
Tomorrow we will have an unplanned (until yesterday) visit to the GI's office for labs. If her prealbumin is as low as it has been over the past month, we have no choice- she will be admitted and have an NG tube placed. She is just losing too much weight and her labs show how sick her body is nutritionally (in addition to everything else), and the doctors have said that their backs are against the wall. A new medication was started yesterday, hoping she may be able to start eating much more, but I haven't noticed a difference.
A few doctors have asked why, given her abnormal marrow, labs, infections and the possibility of Myleodysplasia,  her case has not been presented at Tumor Board. Our Hem/Onc appointment is in 12 days, and I intend to ask that myself, but in the mean time her Pediatrician is going to call the Hem/Onc doctor herself and talk about this. Elizabeth does not have a tumor- Tumor Board is a meeting held by Oncologists to talk about patients who present with a difficult, undiagnosed, or complex case.

On my Valentine's Day card, Liz wrote "Thank you for taking me to the hospital and for taking care of me. I am sorry we have to go through this. When do you think God will be done?" Last night she climbed into my lap and repeated those same words as she whispered in my ear. Then, she said
"But on the bright side, I don't have cancer, I don't have a special brain, and I can hear. Those are good things. I just wish I knew when we would be done with this."
She is tired. We are all just so, so tired. Grateful for all of the good things. Grateful for being spared awful things. Grateful for the amazing blessings we have. But my goodness, we are tired.

Valentine's Day

Don't look at the dusty floor (Walter is sanding and painting this week). The girls
love having a trail of rose petals leading from their beds to the dining room each
Valentine's Day.

Liz couldn't wait to give Kate this stuffed animal

While we were at treatment on Monday, Jack and Kate
shopped for Liz. Jackson chose butterfly socks.

My heart

Kate bought Lulu butterfly earrings

Two gifts before 8:00am... fun stuff!!

Liz reading a card from her Papa

Liz chose a gift for Kate weeks ago and was anxious to
give it to her. They fight hard....but love harder.

My dad has a tradition of dropping gifts on the porch each Valentine's Day.
This has been a highlight of many, many Valentine's Day mornings. He is so
thoughtful and pays attention to each person's interests. This year he gave Kate a horse necklace,
Liz a butterfly necklace, and Jackson got a Cars watch...among other fun treats.

I Love You Day is always fun in our home. Small gifts in the morning with a special breakfast treat before school is
simple, but the perfect start to a day celebrating love. When the twins were about two, we started a tradition of having an
"I Love You dinner" in the evening. Considering I can't get my act together these days, this year my amazing sister, with the fatigue and craziness of currently caring for two little ones plus a  newborn, made us all dinner to keep the tradition going. She is something! Traditions can take effort and energy, but they come from love, to show love....
perfect for celebrating Valentine's Day.

Tough Day

        
We always enjoy seeing photos of my brother, mostly because we miss him so much. Today my Dad sent this picture ( I don't know how his 200lb body is being held up off the ice by a stick in his ribs, but I do know that this is why I dislike the game of hockey!) and titled it "Tough day at the office for Trav"

Liz said she had a tough day too......

Today was Elizabeth's scheduled IVIg treatment. These are always such loooong days at the hospital as they IV runs for four hours and then she is observed for two hours following treatment. The IV should have started running at 9:00am, but because of a few complications, today it started 2 1/2 hours late, which meant we didn't finish until 5:00pm!
Liz is fully aware of how long the day will be during treatment, but this morning she spent a full hour and a half yelling and crying to me, asking how much longer it was going to take (we hadn't even started yet!) and telling us all that she would only stay for twenty minutes or else she was going to take out her iv. This threat is not to be taken lightly because she totally knows how to take out an IV and would have no hesitation to do so. After such a long time of her constant whining, and knowing we had six hours left, I finally flung open the door to her room and pointed at the room across the hall from hers and then leaned close to her ear and said
"That little girl has cancer and she is getting chemo right now, without crying at all. You can cry when you hurt and you can say how bummed you are that we are here, but stop whining. There is no whining at treatment allowed!"
Not my best mommy moment, and probably one I should keep to myself, but it is reality that I am not composed or able to hold my tongue at times, so there you have it.

Liz has experienced the typical headaches, all-over body pain, fevers and nausea that can accompany IVIG treatments in the days and weeks that follow the day of infusion. Today, though, she had horrible dizziness and visual disturbance during the treatment and it made me nervous at the time. The poor baby kept saying that the paint on the walls was dripping and that the room was shaking and moving. She bacame very scared and just wanted me to hold her. It took a lot not to insist that we stop the IV from running because I was worried what may follow. After some meds, she was better and we continued treatment.

Labs this morning show that she is dehydrated.  Again. An xray done this afternoon show that she is impacted with stool yet again. Urine from today shows that she is dropping protein at a concerning rate (our kidneys work to filter waste from our blood while retaining components our body needs, including protein. Some diseases and conditions cause the proteins to pass through the filters of the kidneys which is excreted in urine. Protein in urine is measured as a +1, +2, +3,+4. Liz is at +4.... not good.
Soooo,  the doctor called tonight and said that we must head back to the hospital first thing in the morning to repeat the urine labs, see doctors and wait while they all talk and figure out what to do next.

There are many things I could write about as I absolutely have thoughts and feelings about all that is going on. And yet, I feel numb and at a loss for words for anything other than facts. I feel alone, I can say that much.

Tomorrow will be a hospital day......but it is also I Love You Day! The kids are beside themselves with anticipation. They have chosen little gifts for each other and look forward to the traditions of the day. When Liz headed to bed, she said "Can't wait to wake up and follow the rose petals to the dining room table that I know you will have all decorated!"
Now I just have to keep awake long enough to decorate and put out the surprises. Such fun!

Will update more tomorrow. To say that prayer and support is appreciated is an understatement. This feels like it is going to get worse before it gets better.......

Update

This is Elizabeth's new toy. At least, I wish she would think of it that way because maybe then she would not fight me every time she has to use it....which is three times a day. Indefinitely. That's a whole lot of fighting.
Advances in medicine really is an amazing thing and this little nasal nebulizer is pretty cool. It is used for inhaled antibiotics- a form of medicating that isn't common, but is starting to be used a bit more. An antibiotic's molecules are broken down and made into a liquid that is put into a chamber and then mists out. Exactly like an nebulizer that is used for breathing treatments, except this one is used to inhale the mist (medication) through the nose. It is being used for Liz to prevent her from getting sinus infections. Remember, she is on the cycle of being immune compromised, getting infections, needing antibiotics to get rid of the infection, and the antibiotics causing the CDifficile to rage. using inhaled antibiotics will help keep her from getting the sinus infections that she is prone to getting every stinkin' time she has a cold or viral thing going on....which is constantly these days.
She says the process burns her nose and is painful, so that is why she fights the treatments. She has no choice, though.

We have the results of the labs done Monday, and I am relieved to report that her liver panel looks much better! Such great news.
Sadly, frustratingly, and cause for great worry, though, is the fact that her other counts look worse. Her Prealbumin is much lower and this is making her doctors very concerned. The fact that this number is even lower and that she has lost more weight makes the doctors think we need to intercede. In her GI's words- her counts and weight are concerning enough on their own, but given that she is so fragile and susceptible to infection, we don't want her getting so far behind that her body would be too tired to fight an infection. Last night when he called me, the GI said if she didn't show drastic change in the next 12-24hours, she would be admitted to have an NG tube (goes in the nose, down the throat and into the stomach) for feeds. I don't know what drastic change we could see other than her greatly increasing her intake, which she just isn't doing. I don't want to go to the hospital, I don't want another admit, and I don't want to start the cycle of using the NG for feeding. But, we may not have a choice. Other than the obvious concern over her weight, her body is showing even through her blood counts that she is malnourished and it is taking a toll.
My plan is to wait until tonight and talk to the doctor and ask if we can go in tomorrow afternoon. Katilin really wants us all at her tournament tomorrow (Walter is finally off on a weekend as he begins vacation tomorrow) and I need to help her get organized with a school project due next week. One day isn't going to make a difference.
I've told Liz we may have to go to the hospital, but life goes on and in fact, she is cleaning her room right now and working on homework. She absolutely does not know about the tube, as she would freak out (wouldn't you?!) and there is no way I would be able to get her in the car let alone into the hospital.

So that's where we are at....will update later.

Sweet!

Do you know who this is with Miss Elizabeth Claire?......

....it's sweet, sweet Jana Alayra. If you don't know who she is, I encourage you to look her up. She is an amazing woman who shares her life story and testimony with many, many groups around the world. She is also a fun, fabulous Christian singer who my kids happen to have taken to from the time they first heard her over seven years ago. Though Jana is based in the OC, she is very well known and busy with performances and appearances. The MOMS group I attend has been fortunate enough to have her share multiple times over the years. Anyway, my kids totally love Jana's music and have met her before, and I was excited to be able to have Liz with me this morning when Jana was back at my MOMS group. She was warm with Liz, and a little pep-talk, a free cd (just for being a special kid) and a big hug, had Liz a smiles.


 Know what else is sweet? A big 'ol bag full of M&M's! Know who would agree with that statement? A little guy named Jackson, who happened to be caught eating M&M's in bed at 12:40 AM (!!!!!!) this morning. Not. Even. Kidding. I heard noise on and off coming from his room for about ten minutes. First, I thought he was climbing down from his cool loft bed to go to the bathroom. Then, when I didn't hear his steps coming down the hall, I thought he was restless and maybe books or little cars left on his bed were being pushed around, causing the noise. Finally, I sent Walt in and he found little Mr. Wonka eating the candy! When Walt entered the room, Jackson looked up and said "Oh, hi". Twelve forty in the morning, friends! For goodness sake!
Sweet stuff!

I feel like dog....

The kids want a dog so badly. Liz has become obsessed with the idea and spends at least an hour each morning searching the web for the perfect dog....every day there is a new perfect one. I will admit that I fueled the fire by promising her a dog during her last hospitalization. I never should have done that. I mean, I do promise that we will get one, just not now. Not now, not next week, or the week after that. They are just so much work and, well, I am worn out from work. And, I have told many people, many times that I a convinced we will get a dog with a health issue and I can't take the idea of more money or care going towards a sick animal. That isn't going to happen you say? I can give you two very real, very sad examples of that happening to two people I know. I just can't take that right now. We will get a dog. Soon. Just not now. Until then, I will feel like a mean mommy. Exhibit one...

Are you kidding me? How sad is this? The kid has been sleeping with a balloon dog! A. Balloon. Dog. For goodness sake! Exhibit two, if only you could see, is Elizabeth's printed out photos of "Pete" and "Coco" from the animal shelter's adoption page. Ugh. Saturday we went to the cutest birthday "pawty" and we were surrounded by everything puppy. Even the darn chips were in the shape of dog bones. Juliette, I heard nothing but how mean I am and how nice of a mommy you are because you gave your child a dog party AND you have two real dogs! : ) Soon. Just not now. Speaking of dogs..... dogs poop....and I feel like poop. I finally broke down and went to the doctor, if only to get some cough syrup that would actually work. Turns out I have bronchitis/border-line walking pneumonia. Blah. How did that happen?! To top it off and to get my co-pay's worth, I also have a bladder infection. Good stuff. The doctor asked me if I have been extra tired or under any stress lately and I about laughed in her face. I didn't even go there with all I could have said; so I just said "umm, some." Finally, thank you for caring about our family and especially for praying for our Elizabeth. My blog has had over 20,300 (!!) reads, and though I feel exposed and wonder at times if I should continue to blog in the "open", I appreciate that there may have been 20,000 prayers for my family.

Very short post tonight as I am feeling pretty sick myself with what I think may be bronchitis. I am just hoping coughing non-stop is burning some serious calories. Liz's cold isn't getting any worse and I pray this is a sign that the treatment is working! This afternoon, though she started soiling and has had some intense tummy pain. This is characteristic of CDiff, and I can't bear to think that it could be back. So, I am going to pray and know that tomorrow is a new day.

Elizabeth's Choice...

Elizabeth Claire made my heart stop this morning.
We were walking from the car to Jackson's classroom for pick-up and she stopped me and said "I want to tell you something."
I asked her what she had to say and she answered-
"I want to be Baptized!"
My heart stopped. Out of surprise and the pureness of her request...it stopped.
When I asked her why she would like to be baptized she said....
"Because with all I have been through, I think God is trying to tell me something. I want him in my heart and I want people to know that I follow Jesus"
She went on to say that she has been thinking of it for a while and she feels it is what she needs to do.
Ironically, she has not been to church in months and months (her wonderful teachers mail home each week's lessons).

My precious girl. My sweet Elizabeth, who has been downright mean and nasty lately...sharp with her tongue and even cruel with her actions. My girl, who has made me more concerned about her emotional health over the last few weeks than even her physical health; so worried that she was losing complete trust in everyone, in prayer, and even in her Savior.

My first born, who has been through hell and who has no clear picture of an immediate end in sight to her pain and worry....
is choosing, on her own prompting, to be baptized. She does trust. She does believe. She does want to live for Him.

My heart. My Elizabeth.

So, this guy......

....is getting married in July. His gorgeous fiance, Brooke, should be in the photo I post about his wedding, but I figured I should get her permission before posting a photo of her. Since it is 4 1/2 (!!!) hours ahead of our time in Newfoundland (seriously, it's like they live in space that place is so far away!), I cannot call her, so this photo of Travis with Jax will have to do.

Anyway, my (big) baby brother is getting married in July-in Maine- and we are going, of course! Rather than make it a quick trip, we will spend nine days back East. So excited! Walter and I have been without kids, and the kids and I went without Walt, but this will be our first time as a family and I cannot wait. It will be extra sweet because our trip last summer was cancelled due to Liz's hospitalization. We're going this time, no matter what! I didn't even buy the airfare insurance- that's how serious I am about this.


Liz is sick again. Jackson and Kate have had colds (though Kate will tell you she is not sick, as she hacks away) and now Liz and I are sick (though I am saying the same as Kate :) ). When her doctor called to check in today and heard about Liz being sick again she said "oh, for goodness sake!"
Exactly what I am thinking! Alright, not exactly. If you know me well, you know I am really thinking "oh, for crap's sake!", but I am trying to do better at not using that phrase.
Anyway, Liz is sick and because of that, her liver studies and her pulmonary function test cannot be done on Monday. She was also scheduled to have a weight check tomorrow, but we'll hold off on that too as we know she hasn't gained any weight the last two days while she's been sick. I am fine with waiting a few extra days for the tests because I want results that show her true numbers, not results that are affected by a virus.
Please, please pray that her cold stays simple. If she gets a sinus infection or pneumonia (which has been her norm), she will need antibiotics, which will cause her CDifficile to come back. Same old cycle.
Anyway, we're praying hard over here for the cold to remain just a cold.
Her doctor also reminded me today that we are to follow the "101' and run" mindset with Liz until we're told otherwise. That is, if she gets a temp of 101', we are to go directly to the Pediatrician or ER. I hope the professionals know that a little rhyme only irritates a parent, and does not serve as a cute reminder.

Thank you for continuing to care about my family!

Imperfect

I posted today on facebook that I need everyone to know how impatient I am. How angry I get, how I am unfaithful in trusting Him, how I am not always positive, and how I lose my mind with impatience at times. All of the wonderful and supportive comments I get about my strength, patience and how I handle certain things is motivating and does lift me up, but I need to keep it real and make sure you all know that I am not all of those things all of the time (not even half of the time!). Really. Ask the kids, or Walter, or my poor sister who gets my crazy calls some days. I am so imperfect in how I am handling myself. I can be such a mess, actually.

Yesterday was a looooonnnnngggg day at the hospital. Liz and I were there from 10:30-5:00. Her IV fluids took forever to run and then we had a terribly long wait at the Hematology/Oncology office.
I am happy Liz got fluids yesterday as she was indeed dehydrated (as labs showed) and she came down with the cold Kate and Jackson have had, so she feels pretty crummy. I was also happy that we were able to go directly to "Day Care" (the area of the hospital where patients going through chemo, transfusions, infusions, IVIg, etc. receive treatment), so we avoided having to go to the ER and having her exposed to all the germs floating around that petri dish of an area. Also, the Day Care nurses know her well, so she is comfortable there. They also are the best at starting iv's and she has a room to herself, so it is an easier experience all around for us.
I had a good talk with the hem/onc doctor and she sincerely let me know that she understands my frustrations. In fact, as she left the room, she came back to tell me that she gets upset when there are cases that, like a puzzle, take longer to put together. So much to be said as to what was discussed, but basically, she let me know that they think Elizabeth may have something developing. They have talked about this diagnosis before as a possibility, but as I was told again yesterday, it can take months to years to develop. Elizabeth's bone marrow is abnormal, we know that, but there are certain markers in the marrow that give this definitive diagnosis, and so far, Liz's marrow hasn't presented those specific markers. The abnormalities her marrow does show, along with her abnormal cell counts point to the strong possibility that she is developing Myleodysplastic Syndrome (specifically, if this is the case, she would most likely have the RCMD category). Of course, my first question was if we could just go ahead and start treatment for this, but the answer is no. They need a definitive diagnosis and because there are different categories of MDS, we'd need to know which one she has because treatment varies. Fabulous.
Since she just had her last bone marrow aspiration in December, they are recommending we wait until May to repeat it. That seems so long to wait. We put men on the moon for crap's sake, I want it checked and ruled-out, now! The doctor reminded me that MDS can take months to years to "develop", so we need to give time in between BMA's, and also, if her marrow is going to recover, we want to give that time to happen too. After three BMA's that have shown marrow that hasn't recovered, this hopeful thinking is hard to cling to.

So, Hem/Onc is recommending we continue IVIG until April, then take 2 months off (her other docs agree with this). Testing having to do with white cells and immunology will then be done (testing that can't be done while on IVIg). Then, in May she'll have another bone marrow aspiration.
For the immediate, she'll keep up with the transfusions, start inhaled antibiotics (to prevent infections), have a pulmonary function test (because her lungs don't expand they way they would like them to) and her liver studies repeated next week (if her liver numbers are still off, then I will run away. That'll be the straw, I am telling you now). Our primary focus right now is to keep her from getting infections, and for goodness sake, to get her to gain some weight. It is crucial she not lose anymore weight.

I wish I had something profound or witty to write about tonight, but I just don't.
Working on being patient, positive and not letting my frustration get the best of me....I have a lot of work to do in those areas!

It's a good thing that in the midst of all of this, we have happiness all around....

like this little man. He is growing so tall and big, and even a bit naughty... and his sweet smile lights up a room; Jackson lights up our family.







And my Kate. How fun to be part of a team! This is their pre-game huddle and cheer......
followed by her first time serving during a tournament. Only 5 girls have served during games, and you should have seen Kate's frantic expression when the coach told her she was serving. Eeekkk! Her teammates were awesome as they immediately started cheering her on. Over the net, 3 points scored off her serves, and her first time out of the way. Phew! Have I mentioned for the 100th time how happy I am for my girl to have this sport-this team- to call all her own right now?