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!