Saturday

I've sat down 3 times trying to update this today, but it just was not happening. Very busy. Busy in a good way. Aunt Lori, Uncle Bruce, Grandma Nea, Papa DD, Daddy, Riley, Avery, Grammie & Papa all stopped in. It was very good for Shelby. No fever today and her tummy pain was a lot less, but her diarrhea is back tonight and her tummy is about 2 cm larger than last night. Not too bad of an increase, though. She is on neutropenic precautions AGAIN...its the same 'ole story over and over again. Fever and abdominal pain upon admit, then she gets neutropenic, nothing grows from the cultures and we head home. [[Sigh]] Let's hope that's how this stay goes.

Headed to the ER

6:24 p.m.
Getting admitted. Just waiting to head upstairs.

4:28 p.m.
IV in, urine & stool collection, blood cultures & labs taken, chest x-ray done...now we wait. Her tummy hurts pretty bad, but she's firing down ice chips like nobody's business. That's my girl.

12:54 p.m.
Shelby woke with a fever in the night and then diarrhea started this morning. Her fever dipped a bit, so we were just watching her closely, but now its headed back up. Chicago says get her looked at. Here we go...prayers please.

Sorry for the lack of updating...

I'm not abandoning my blog by any means, but this past week its been easier to gripe about what's going on with Shelby on Facebook. It was just easier to post one-liners about the situation out of my frustration.

But I do want to keep you loyal and faithful followers in the loop...so Friday in Chicago she had labs (like a trooper!), full PFT's, an abdominal ultrasound and an appointment with her therapist. Her labs showed only a slight (.2 of a point) change in her wbc, but her ANC did go into the 600's making it o.k. for her to go back to school yesterday. Her pulmonologist said her PFT's looked o.k., but to repeat them in 1-2 months and see him in clinic. The GI in Chicago said it was finally o.k. to give her the Elavil for her tummy pain since her PFT's looked o.k. So now she is being treated for her tummy pain, but her med can make her sleepy and can take a while to build up in her system. We shall see. Its been hard for her to go back to school after being gone for a week, but today was better than yesterday for her.

When I read the paragraph above, it looks really simple. Not complicated. But, it isn't easy. Scott and I are torn so many times on how to react and help Shelby get through her pain. Do we push the doctors more for answers? How do we explain this to Riley who is mad to come home and see her sister acting fine, when an hour before Shelby was feeling rotten? We just manage.

Stupid WBC!

Monday Shelby came home early from school with tummy pain. Different tummy pain than her "usual" in that when it was going on 8 hours of her complaining I took her to the ER to get checked out. No fever, just pain. Labs were drawn showing her already low white blood cell count to be even lower at 1.4 - YUCK! She was not admitted, but is at home on "house arrest" until she has labs that show that number to be getting better. Those are scheduled for Friday morning along with pulmonary function tests for some chest/lung pain and palpitations that she has been complaining of the last few weeks. Oh Shelby...so sweet, so complicated...prayers please.

April is...

National Donate Life Month. Unless this is the first time you've visited my blog, you well-know how important organ donation is to our family. IT WILL SAVE SHELBY'S LIFE ONE DAY. Please, be an organ donor.

Avery's birthday weekend

Avery's 3rd Birthday

Avery's 3rd Birthday Party

Day after party & misc.

Spring Break week recap

We did a bit of this and a bit of that. We took advantage of several free activities in Chicago and really made it a budget (but FUN) trip. The captions on the pics pretty much sum it up.

Spring Break 2010 Chicago trip

Today I heard from Dr. Saps, the Chicago GI, regarding Shelby's gastric emptying study. There is some delay in her stomach emptying, but since she's been pretty symptom-free (Yippee!) the past few weeks we are just going to sit tight right now. That means not starting the Elavil or anything else. Not even anything for the delayed emptying. Scott and I have talked a bit and think we will call Dr. Saps and talk to him some more about this delay, though. Some things she feels, we think could be helped by medication for that. So, we just pray right now that her health stays STABLE. We go back in to Chicago on the 19th (I think?) to see a dermatologist. Yes, 1 more specialist!

My (baby) Avery turned 3 today! I just can't believe she's 3 already! I'll post Sunday all the birthday party pics. Enjoy!

Happy Easter!

I hope you all had a blessed Easter! We did! This week Shelby has her gastric emptying study in Chicago. We're going to try to make some fun out of our trip. She finally got the approval to start the med for her tummy pain, but there's still a discrepancy on what dosage she is supposed to get. Two doctors, two different opinions - fun ~ NOT! I took her to Immediate Care today because she has a sore in her nose that has been there for about a week-and-a-half and is not healing despite putting Neosporin on it several times daily. It was cultured and she is to use Bactroban on it 3 times daily for a week and follow up with her Pediatrician next week. Let's pray nothing grows from the culture.

Easter 2010

Prayers for others please

Dear Friends and Family,

Please add these people to your prayers.

My Aunt Angie and family - her father, Angelo, passed away unexpectedly after having surgery last week.

Ayanna, our little friend from Liver Families - what an ordeal they are going through. Please flood the heavens with prayers for this little girl.

Thank you so much.

Shelby's 8th Birthday

My Shelby turned 8. Eight, Eight, 8!!! Wow! I loved it when she asked to hear "her story." We talked about how fast she came into this world - 1 push, 1 pull (the doctor had me put my hands under her armpits and pull her out) and what a little peanut she was. I then had to get out the picture album - that was way back before we were digital (ha, ha)! Her birthday weekend started out Saturday morning with a visit to the Discovery Center for their "Bubble Festival." Shelby loves to blow bubbles with soap and her hands as the bubble wand when she washes her hands. We watched a live performance by Geoffrey Akins which was amazing! We then played with lots of bubbles. She had a ton of fun Saturday afternoon/night with a friend sleeping over. The party theme was "Monkeys." They played at Monkey Joe's, made sock monkey heads, had all sorts of little monkey trinkets in their goody baskets, ate chocolate covered bananas and had, of course, monkey bread for breakfast! They wore matching monkey nightgowns, too. Yesterday, the big girls and Daddy played at a few parks while Avery napped and Mommy got some much-needed housework done. For supper, Grammie, Papa and Grandma Marian came over for Subway - Shelby's choice. It was a great weekend.

Shelby's 8th Birthday

Happy 8th Birthday my beautiful Shelby!

CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Scott received his acceptance letter into Nursing school yesterday!!!!!!!!!!! Yippee! Whohoo! He has worked so hard for this! We are so proud of him!

Watch for later in the day for Shelby birthday updates. Today she is 8!

Dr. Saps visit

This afternoon we met with Dr. Saps. He is a GI - yes Shelby already has a FANTASTIC one here in Rockford - but he specializes in motility issues and Irritable Bowel Syndrome. He does not think Shelby has either of those. What he does believe she has is functional pain. He does not believe it is from her liver disease, but believes that it is aggravated by her body not being in "balance" from her liver disease. Make sense? Does to me. Basically, her abdominal pain would probably still be there with or without liver disease, but it wouldn't be this bad. She is being put on 2 new medications. One is for the pain and one is to try to eradicate any "bad" bacteria in her gut. He's not so sure that she actually has a dairy allergy despite her RAST test results. If we can get her gut pain under control then, maybe, possibly we can re-introduce dairy into her diet. When Shelby heard this she exclaimed "You are the BEST doctor ever!" and ran and gave him a huge hug. Along with her medication for the pain will come cognitive therapy (back to our beloved Dr. Jill) and possibly hypnosis. I'll have to research that one. Dr. Saps said he didn't believe it when it first came out that hypnosis helped, but the research results are very impressive. Shelby has to have an EKG before she can start her medication and have a gastric emptying study done. Dr. Saps also agrees that Dr. Deutsch is a wonderful and smart GI and he can manage Shelby's care. We'll check in with Dr. Saps to let him know how things are going. Good visit. Good plan. Now, let's pray that it works!

Please consider supporting fellow "liver" Mom, Crystal as she runs to raise money for liver disease research. Thanks!

Some progress on the "new" med front

"The squeaky wheel gets the grease."

That is the approach I often have to take in dealing with Shelby's doctors and nurses. No, she isn't the sickest kid around, but she's my kid and she hurts, dammit! If they don't understand that it is a hard situation to deal with day-to-day, then I will *help* them understand by letting them know how much it is affecting my daughter's life. So, its been 6 days since clinic. No med has been prescribed - we haven't even been contacted about it. So yesterday we called...and this morning I called. Lo and behold, turns out Shelby has to see the GI in Chicago to get his input on what med she should be on...it was made out to sound much easier than that in clinic Tuesday. Because of our insurance, she can only be seen at the Lincoln Park location (main hospital, not suburb clinics) and they did not have an opening until JUNE. Yes, I said JUNE. Three...1, 2, 3...months away. NOT o.k. Shelby's liver nurse waved her magic wand and, voila, she has an appointment with Dr. Saps this Monday afternoon. Now that's what I'm talkin' about baby!

Tomorrow...5 days later....I'll get around to it eventually

Sorry to leave you all hanging there with the "I'll update tomorrow" line. Jeez! What kind of blogger am I?!?!? Shelby's check-up with Dr. Langman was good. Her bones look fabulous - "normal" - that's what we like! She'll have blood work done again in a year for him to make sure her levels are holding steady.

We are still waiting to hear on what med the GI's want to try her on. I think I'll be doing a "checking-on-the-progress-of-that-decision" phone call tomorrow. Dr. Mom & Dad (uh, me and Scott, that is) miscommunicated and just realized today that she has not had her Levsin (hyoscamine) since lunch time on Friday. Yikes! (That's the one she's currently on for tummy pain.) Since she still has such chronic pain I was thinking it was not working - wrong! She is supposed to have it 3 times a day and her little body was missing it tonight. We got her script filled today and got a dose in her tonight, but the pain had already set in. Poor kid had a tough time getting to sleep. Major guilt-ridden parents here. :-(

We've had a busy weekend taking a road-trip yesterday in the North Aurora and Wheaton 'burbs to pick up some loft beds for the big girls off of craigslist. We met "Aunt" Tony (Martin girls joke) for lunch and managed to shop a bit at an outlet mall. (Wish we could have seen you, "Uncle" Julie!) Last night and today were consumed by assembling the beds and the bedroom. I'm tired, but for some reason am up typing this update at 1:23 a.m.....hmmmm....better head to bed.

Tony, Me and Avery

Uncle Tony and his Nieces

Clinic news

So, Dr. Alonso agreed that gastritis can cause abdominal pain, but not the kind of gastritis caused by portal hypertension. She believes (is hoping?) that Shelby's abdominal pain is a motility issue that a new type of med will help. She is e-mailing a GI here in Chicago and Dr. Deutsch so they can work together deciding what med to put her on. We are to give it about 6 weeks. If we see no improvement after that time period, then transplant talks will start. It would have to be a living donor because she would be no where on the transplant list - not w/her type of complications. Jaundice, poor growth, bleeding - those issues would put her on the list, but not Shelby's issues. Dr. Alonso, though, feels that if we cannot get this pain under control, then Shelby's quality of life is being compromised (many, many, many weekly/daily trips to the nurse's office for tummy pain, laying in bed at home when her tummy hurts, not wanting to play when it hurts - a LOT of missed school) and, along w/her other side effects of liver disease, it is time to get her transplanted. She said Shelby's time is getting closer, no doubt, w/the severity of her portal hypertension. Dr. Alonso is very impressed w/Shelby's excellent growth & muscle tone. Some things we're starting to see in Shelby were evident early this evening as we took her to a "Family Jump Time" at Pump It Up here in Chicago. Shelby played (hard) for about 20 minutes then just looked like all her steam had been let out. She sat, was very quiet, and we needed to go out in the lobby and sit w/her for a while. We told her it was o.k. if she couldn't play any longer, but she just wanted to rest for round 2. And she did. She never needed that rest before; now she does. She also was very winded as we were walking outside later on the way to supper. These are little signs that her liver is crappy. No other word for it - it sucks. I just want my little girl to not have pain. Dr. Alonso did say that kids w/GI problems did have a lot of pain, but kids w/liver disease alone did not have pain, but very threatening complications. We'll see what this new med is and pray that it works.

We are at the Kohl's house for the night and will be going to see Dr. Langman in the morning. I'll update on that news tomorrow. Night.

Clinic tomorrow

Please keep Shelby in your prayers as she has "liver" clinic tomorrow. We have a lot to talk about with the doctors. We will be in clinic on Tuesday and then Wednesday morning we meet with Dr. Langman about her DEXA, blood and urine results to see if her osteoporosis is gone. He was not anticipating seeing any problems, so let's hope that's what he says.

(Oh, and by the way, tomorrow is my birthday and Shelby's little body seems to think that's time to get sick and hospitalized - at least that's what the past few years have been like. Please pray her little body ignores my birthday :-)

Biopsy results

Normal duodenum biopsies - NO sign of Celiac's or allergy cells present - lymphoid aggregates present - stomach biopsy showed mild gastritis likely secondary to portal gastropathy.

I just got that info from our FABULOUS nurse who is still at work at 8 p.m. We LOVE her! No input from Dr. Deutsch, just the "official" biopsy report.

From what I've read so far about this it seems as if this IS all directly from her liver disease. I have been trying to say that!!!!!! We'll see what Chicago says on Tuesday at clinic.

Test Day

10:29 a.m.
"Clean-out" day went o.k. Drinking all the clear fluids (popsicles, sprite, chicken broth) was fun; drinking the magnesium citrate was NOT. We had to page Dr. Deutsch around 9 p.m. to see if he wanted us to give her a 3rd dose as things weren't coming out that clear yet. We'll see when he comes out and talks to us how "clean" she got. She didn't want to put on that stupid mask and go to sleep, but was super-brave and laid down and just breathed the gas in like a champ. I wiped away her tears. Now we wait.....

1:56 p.m.
She did just fine and was discharged less than an hour after she came out of the procedure. We headed up to Roscoe to get Avery from having lunch with my parents, made a visit to a gift shop and now are hanging out at my parents while Shelby tries to refill her tummy. She weighed 3 lbs. less than her usual and her tummy was about 6 cm smaller than usual. She was cleaned out good!

Dr. Deutsch found redness in her esophagus, stomach and intestines which is to be expected with portal hypertension. She has 4 grade 1-2 varices in the lower part of her esophagus. Those are about the same, but I think she only had 3 last time she was scoped. He did find, though, some nodular mucosa (nodules on the inner lining of the intestine) on the lower portion of her duodenum. This possibly indicates Celiac's or H. pylori or nothing...but, he's never seen this before in her. This is something new. Could this be the answer to her pain? Wednesday we should have biopsy results.

Shelby: Friday tests

Shelby's continual tummy pains have led to tests being ordered. Today we found out that Friday morning she will have a colonoscopy and endoscopy at RMH. Tomorrow at 10 a.m. she will start her clean-out. Prayers, please, that it goes better than last time.

I just realized I really have not posted much about this "tummy pain." I've been doing little updates on Facebook. Back to the blogging for me. Bye, bye Facebook - at least for Lent, anyway. Shelby's tummy pain started in early November, was under control for a while and now back again. Since her abdominal CT back in November (her last admit) showed some thickening of her bowel walls...we'll see what that means.