Do I Look Suspicious?

I got to the hospital this morning around 9:30 a.m. (thanks to my SIL, Heather, for taking the night shift last night). Just like always, I walked in the front door, past the security guards sitting at their desk. As I walked by, I heard one security guard call out to a woman- asking her what she was doing. I kept walking, and heard the security guard call out again. I pushed the button to wait for the elevator, and before I got on, the security guard hurried up to me and asked where I was going- apparently she'd been calling out to ME the whole time.

She asked where I was going- I told her the 3rd floor. She asked WHY I was going there. I told her my daughter was a patient up there. I felt very uncomfortable and somewhat embarrassed- what was going on??? I asked her, "Do I look suspicious or something?" I had been carrying both a laptop bag and supersized purse, but I can't, for the life of me, figure out why I would have looked out of place. She said that they (meaning all security guards at the desk) couldn't see a hospital personnel badge or a pink parents' bracelet on my wrist, so they weren't sure what I was doing there.

[Side note: I'm laughing out loud as I'm typing this (reliving the awkwardness of the moment); Lolly is lying in her bed, trying to take a nap- and giggling whenever she hears me laugh].

I have no idea why I would look suspicious- they must have three thousand visitors (without personnel badges or pink parents' wristbands) walk through the door every day...but for some reason, this morning, I must have looked extra suspicious.

Lolly was alone for a while this morning before I arrived...do you think she minded?  NOT AT ALL.  She has made friends with all the nurses here, and they just dote on her, despite the fact that she has not been the easiest patient.  She has had Attitude (with a capital A), and barely says a word, but they all work SO HARD to get a laugh or a smile out of her (we LOVE our nurses here).

So, when I walked in this morning, our friend (and nurse) Jamee, who isn't even actually our nurse today, was sitting with Lolly, helping her finger paint (with an art she'd brought for her this morning).  Lolly loves Jamee and really trusts her, and she was having a GREAT time.  Since I wasn't here yet, Jamee went ahead and ordered Lolly's breakfast for her- yogurt and chicken (awesome!).

We really do have so much fun here, now that Lolly is feeling better.  It's so strange to hear me say it, but as much as I'm DYING to get home, I'm also going to really miss the friends we've made here.

A few pictures from last night and this morning:

Lolly is really into painting nails now.  She has been gifted several bottles of nail polish, and she has painted the nails of Grammy and several nurses...and her own.  While we've been here, we've discovered that she is left-handed (like me).

Lolly doing Nurse Brittney's nails last night:

And Grammy's (for the second time):

Getting checked by Nurse Michelle:

Late this morning, the Music Therapists came to visit Lolly.  They were AMAZING!  She LOVED it!  She seriously had the best time.

Shannon (the Musical Therapy Student) was so good- she sang songs and read books (while singing) and let Lolly play all sorts of instruments and musical games.  She (Shannon) had a beautiful voice and an amazing talent for engaging Lolly.  My girl was in heaven.  It was so cute to watch.

She especially loved strumming the guitar.  She kept trying to pull her lips inward and pull down her chin so that she wouldn't smile (if anyone knows Luke, you'll know just the look I'm talking about!), but in the end, the smile won out.  She really had a great time!

We got all sorts of good news from the doctor today.  Since she's doing so well eating (and not throwing up), they are discontinuing her TPN feeds (her IV nutrition).  That is great news- not only will she now be able to drink all her fluids, but it also means that for most of the day, we can move around without her IV pole!!!  We were able to go to the playroom without any medical equipment!  It's not the easiest job to push Lolly in her police car and hold onto her IV pole.  It was so strange to leave her room without it.

The main thing holding Lolly here now is her inability to take in enough fluids orally.  Discontinuing her TPN feeds will help a lot, though.  Now she'll probably start to feel thirsty.  She has to take in all her fluids for several days before they'll feel comfortable letting her go home (which means that it will likely be early next week before we get to head out of here).

Ben and the boys are coming tomorrow- it will be Luke's 4th birthday!  Hooray!  Good thing he likes coming down here so much.  Every year, for his birthday, we go with Grandma and Grandpa Andersen and Aunt Joelle to a pumpkin patch.  This year, we're hoping to visit our friends' pumpkin patch here in Utah (Mark and Jen- can we come???) to carry on the tradition.

It should be a great, happy weekend.

A few last shots from today, in the playroom:

We're happy.

Look How Far She's Come!!!

This picture was taken on Sunday, October 3, 2010:

She was lethargic, quiet, and tired of everything:
And today, Wednesday, October 6, 2010, she is...

HAPPY
CHEERFUL (when she's not busy throwing a fit)
FUNNY
(more) ENERGETIC
LAUGHING
PLAYING

AND...(drumroll.....).....


EATING!!!
She ate for the first time since September 10, 2010 (nearly a month!!!) and LOVED it

She's on a NO-FAT diet (eating fat could make her pancreatitis worse), but she doesn't care- she gets food!!!!!!

I was almost giddy ordering room service for her (and for those who know me...it wasn't just because I was excited to eat her leftovers)...
I ordered her grapes, yogurt, corn pops (with skim milk), and a smoothie. She chose to eat her grapes first, but loved her cereal so much that she kept putting her face down in her bowl to decrease the time she had to wait for another bite.
We were soooo happy to watch her enjoy her food so much!!!

The other awesome thing today-

Lolly WALKED for the first time today!!!

I held both her hands- it was just like teaching a kid to walk for the first time. Her legs were really stiff and weak, and there's no way she could walk unassisted right now.

She also took a trip down the hall to visit the dentist. When she was first sick in the hospital, and in a ton of pain, she ground her teeth all the time. It was the most terrible sound I have ever heard- it literally sounded like she was chewing rocks. I was really worried she'd chipped all her teeth off, but the dentist thought things looked great. He did tell us that since Lolly's baby teeth are really small, we can look forward to crowding issues in the future. (Yippee!)

Lolly got another blood transfusion today. Her hematocrit was low (20); we're hoping that a transfusion will help her have more energy and heal more quickly.

I don't want to jinx us, but I think the "H" word isn't too far from being mentioned. Things are going really, really well!!!

Billions of Pictures

All these pictures are from Monday, Tuesday and Wednesday of LAST week

(September 27-29th):

A smile! We had to work so hard for every single one! The port on the right side of her neck is from her HD cath- used for dialysis.

What can I say about Sammi? She's been perfect.
The thumb-sucking is becoming less constant, as she's been in less pain and isn't as scared anymore.

And the little smiles are becoming more constant!

We go to the playroom a lot! She isn't interested in the toys, but loves to color.

My dad (shown pulling the wagon; my mom is taking up the rear with the IV pole) made two trips from Casper, Wyoming last week (8 hours one way) to visit and stay the night with Lolly at the hospital.

Emily, a friend from my neighborhood growing up- and an ER nurse here now- came by with a big balloon bouquet for Lolly. Both girls loved it!

This picture definitely deserves a repost!

Back in the playroom (both of us looking a little rough):

She LOVES driving this car around. She feels safe in there, and wants to stay in the car, even when we get back to her room. There have been several occasions when she's fallen asleep at the wheel- even when we're out for a drive!

We take her IV pole everywhere:

That's her HD Cath (for dialysis) on her neck (it has since been removed!):

My brother, Lance, with Sammi:

Lolly HATED her Anderson tube (a suction tube that went down through her nose, into her stomach, to keep it empty), and hated that little sticker by her nostril to keep it in place:

I was excited to finally meet a fellow "heart mom," Kristen, and her adorable little boy, Luke:

Luke has HLHS, like Trey, and is such a friendly, happy, nice little boy. We went to lunch together in the cafeteria. I brought Lolly down, in her police car. Seeing Luke drink from his sippy cup made Lolly want a drink for the first time in a long time (although she couldn't have one back then)- a very good sign!

Thanks for coming to visit, Kristen and Luke!

Lolly wasn't feeling very social- she had this look on her face the entire time (it wasn't her best day):

My cousin, Chris, reading a story to Lolly one night. Chris and Laurie have spent countless hours at the hospital over the years, keeping my kids entertained. They visited Trey again and again during all his heart surgeries, and were the lucky ones babysitting the boys two years ago when he was hospitalized here for asthma, and now, they come to entertain Lolly. We love you Funks!

Out for another walk:

Sammi (and Heather, Ben's sister):

Miracles- October 4, 2010

Today, my list of VERY GOOD THINGS far outweighs any of the bad I could list.  Lolly has had such an amazing few days- we've had so much fun with her and the other kids (who went home last night), that I really don't know where to begin. 

My list of good things:

1. PANCREATITIS- improving every day (as indicated by her lab results)

2. PNEUMATOSIS COLI (air bubbles in her bowel)- GONE! (yes...I said gone- and I think, this time, it's for real)

3. ANDERSON TUBE (the suction tube in her nose that went down to her stomach)- GONE!  She no longer needs it, due to the improved pancreatitis and Pneumatisis coli.

4. SHE'S DRINKING!!!  After 10 (I think) days without eating or drinking anything, she is finally allowed to drink clear liquids- 8 ounces every 24 hours.  She's still getting all her nutrition through her IV to make sure she gets what she needs.

5. NO MORE DIALYSIS!!!  Yes- you read that right.  Two weeks ago, she was on 24/7 dialysis, and now she doesn't need it anymore- at all.  The doc was so sure that he pulled the HD Cath (hemodialysis cath) out of her neck.  When she was on dialysis, her blood was pulled out, cleaned, and returned using the port in her neck.  She is peeing so well now that the port was removed yesterday!

6. She is TALKING (a little), SMILING, and LAUGHING.  For the past several weeks, we have had to work SO HARD for every little smile or laugh she gave us.  It's amazing to see the change in her.  Yes- she's still Lolly- with more than her fair share of attitude and spunk, but she seems happy (when she's in a good mood).  We are so, so happy.  Like...so happy I can't even explain how happy we are.  We are so relieved to see our girl coming back.

7. SHE WANTS TO PLAY!!!  Yesterday, Luke was playing with Lolly's Play Doh (thanks, Reuben and Sara!), and she wanted to play, too.  Moments where she's felt like playing have been very few and far between, so it was wonderful to see her playing and even getting mad at Luke (for hogging it).

8. SHE LETS ME COMB HER HAIR!  At home, she loved looking pretty- having her hair fancy and her nails painted and wearing jewelry.  For the first two weeks here, she was furious any time I touched her hair.  She had the craziest bedhead, and she didn't care at all.  Last night, she let me braid her hair (she was a little bit mad about it, but a little sass is normal for her) and paint her nails.  My mom was nice enough to let Lolly paint her nails too.  Lolly had it all over mom's fingers- it was awesome, and she had such a great time. 

9. SHE WANTS TO BE HELD!  She prefers to fall asleep being cuddled.  She's never been much of a cuddler, even as a baby, but now that she feels good, she prefers to be held while she sleeps.  I think it makes her feel safe, and it makes all of us really happy to be able to finally comfort her.

10. SHE'S BEEN ENJOYING HER BATHTIME.  A few weeks ago, after the big boys started school, I started giving Luke and Lolly a long tub together every morning while I got myself ready.  They loved it, and tried to flood the bathroom nearly every day by pouring cups of water over the edge.  They laughed and giggled the whole time they were in the tub together.  A few days ago, I gave Lolly a bath, and for the first time, she wanted to play a little in the water.  She even grabbed the little bottle of shampoo and chugged some down before I had a chance to stop her (this was before she was allowed to drink anything).

11.  SHE LOOKS REALLY GOOD!  She has looked so sickly and frail, and is finally getting some of the sparkle back in her eyes.  It's so encouraging to see.  Since she's been off dialysis, she's actually been retaining extra water (which will hopefully just resolve itself), and even looks puffy.  Without the extra fluid, she looks so frail and skinny, and I'm sure she has lost weight here (valuable pounds- she's always been skin and bones). 

12. SHE'S GETTING SOME ENERGY!  Little Lolly is so anemic that it's no surprise that she doesn't have much energy at all.  She is able to sit up more and more each day. 

Lolly has been here for three weeks now.  Let me remind you WHERE SHE'S BEEN:

1. HUS- Hemolytic Uremic Syndrome, caused by E. coli

2. Encephalopathy (problems with her brain)- she was asleep for four days straight when she first got here- and we didn't know if she would ever really wake up or if her brain function would be normal again

3. Seizures (she takes Keppra every day now)

4. Acute kidney failure, requiring 24/7 dialysis at one point

5. Blood Transfusions required daily at one point

6. Pancreatitis

7. Pneumatosis coli (she has two IV antibiotics to help with that)

She's had an MRI, numerous EEGs and a CT scan to check her brain function.  

She been on C-Pap and BiPAP, was intubated, and has used blow-by oxygen and a cannula to help her breathe.

She's had many IV's, too many finger pokes to count, an ART line, a HD cath, and now has just a PICC line for blood draws, TPN feeds and to give medications.

She's had an NG and an NJ feeding tube and currently gets TPN IV nutrition.  She went for about TWO WEEKS without getting to eat or drink anything at all, and finally gets little sips of clear liquids- hooray!

She's had soooo many x-rays- sometime as many as 6 per day. 

She has her vitals check every four hours- and HATES having her blood pressure taken, sats checked, temperature taken, and belly measured.  HATES IT!!!

So...if POINT A is WHERE SHE'S BEEN.

And if POINT B is WHERE WE ARE NOW (a.k.a. My List of Good things at the top of the post)

Had Lolly gone from Point A to Point B overnight, everyone would be talking about what a miracle it was.  There would be no question that prayers had been answered and that there had been heavenly intervention in her behalf. 

But...even though it has been a very slow, winding journey over the past three weeks to get from POINT A to POINT B, I think it is, indeed, a miracle. 

Ben's cousin, Alicia, has this quote posted on her Facebook page:

There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." Albert Einstein

I love it.  It's my new motto.  And I truly think that Lolly's recovery has been a miracle.  I know that prayers have been answered and that Heavenly Father has been aware of her. 

I wish I could upload pictures today (I'll keep trying).  You'd be amazed at how good Lolly looks!  We finally feel like she's on the road to recovery.  It will still be a long road, I'm sure, and we could still be in the hospital for a while.  Her stomach has been without food or drink for a very long time, and without Zofran, she hasn't been able to keep anything down.  She probably won't be released from the hospital until she can eat and drink all the nutrition she needs (no saying how long that could take).  Her blood counts are still very low (her hematocrit- red blood cells- are around 22- they'll give her another transfusion when they get down to about 20).  Those two things are her biggest problems right now.  They don't want to rush her eating too much- it might cause complications or make her pancratitis worse. 

For today, though, I'm really, really thankful to my Heavenly Father.  We still have our little Lolly, and we are so, so proud of her.  She has endured her trials remarkably well.  I feel so blessed to be her mom.

P.S. Happy Birthday to the best sister any girl could hope for.  Bel Bel- words cannot say how thankful I am to have you as my sister.  Love you!

Monday, October 4, 2010

Things here are good...as in REALLY, REALLY good.  I am having trouble uploading pictures at the hospital today.  If I can't get that to work before Lolly wakes up from her nap, I'll be back soon with a real update.

Friday, OCTOBER (!!!???!!!) 1, 2010

Great day today.  Highlights include: Swedish meatballs for lunch, my favorite dessert ever, fabulous sunglasses, smiles and LAUGHS from Lolly, no dialysis or transfusion, a few awesome surprises, a great Cardiology check-up for Trey, and Ben and the boys' arrival.  A really great day!  Pictures and details coming soon!!!

Thursday, September 30, 2010

(still snoozing at 2 in the afternoon)

Yesterday wasn't great for Lolly; the evening was even worse, but she slept well all night, and is STILL SLEEPING (it's 1:45 p.m.)!!!  Our nurse today has been wonderful.  Lolly was scheduled for a KUB x-ray at 9 a.m.  She was still sleeping, and I begged them to hold off on the x-ray until she woke up.  I'm not sure if I should be worried that she's still asleep, but I am very grateful that she is.  I'm hoping all this rest will help her to cope a little better today.

Things have been a little discouraging here.  It seems as though every step forward is accompanied by two steps backward.  But today, I did get some good news.  Her pancreatitis has been getting worse, as measured by the Lipase levels in her labs.  Two days ago, her Lipase level was 2217 (normal range is 10-150).  Today, it's down to 873.  

Other good things- she doesn't need a blood transfusion or dialysis today- although I suspect she'll need both tomorrow.  Because this blog is as much for my record keeping as it is to inform those who want to know, here are some other lab results from today:

Platelet count:

Normal Range: 150 to 400

  September 28- 126

September 30- 78

(she's low, but her count has been as low as 14, so it's not terrible)

Hematocrit (Red Blood Cell Count):

Normal Range: 34 to 40

September 28- 21.7

September 30- 27.5 (thanks to Tuesday's transfusion)

I can't believe it's the last day of September.  Fall (my favorite season) is passing me by!  Just today, I've heard two different people talk about Thanksgiving.  I try to not let my mind wander to what life should be like right now- putting out fall decorations, planning for birthdays (Luke's is in two weeks), working in my yard, etc.

It's really strange to think about the world going on- people living normal lives- while my life, as I once knew it, is pretty much at a standstill.  I am both overwhelmed with the thought and dying with anticipation for the day I get to be home, with a husband and all five kids- cooking meals, doing dishes, doing load after load of laundry, helping with homework, picking up messes, reading stories, taking walks, tucking kids into beds, and stressing about all the little things of life.  It seems like such a long way off, and if I think about how long it might be until we're all home, I get really sad.  

It's really easy to get discouraged here.  Healing is so gradual and so, so slow.  One step forward and two steps back seems to be the norm.  Worry and lack of sleep get the best of me, at times, and I'm afraid that I am terrible company most of the time.  I'm surprised that my dear mother hasn't given up on me.  This is Lolly's 19th day in the hospital.  Ben's sister, Heather, was at the hospital last night, when Lolly was having a terrible night.  Heather lives in Salt Lake, and I'm grateful that she keeps coming back, despite the fact that I'm not always the most cheerful person here.  She's done a lot to lighten my load by helping to care for both Sammi and Lolly.  This morning, I got a really encouraging email from her, with a link to an amazing video by one of my favorite speakers, Elder Jeffrey R. Holland, of the Quorum of the Twelve Apostles of our church, The Church of Jesus Christ of Latter-day Saints.  No matter what trials you are currently dealing with in your life, it will bring you encouragement too.  It is well worth the 4-and-a-half-minutes you'll spend watching it.

http://www.youtube.com/watch?v=8nczw6xHJ0I

I am really looking forward to this this weekend.  It should give us a good boost.