Thursday, October 30, 2008

Avery's cold, Shelby's itching & Riley's...she's just fine!

Avery caught big sis Riley's cold. She's been grumpy, not eating that well and just generally not feeling well. Her nose is a bit runny and she has a cough. Yesterday, after her nap, she had a fever, but nothing that Tylenol didn't help. Tonight Scott checked on her and told me she felt really hot. I snuck in there with the thermometer and her temp was 102. I scooped her up and we gave her some Tylenol. We undressed her and gave her cold water to drink. Now, about an hour later she's around 100. She' acting o.k.; in fact, a bit too well for being up so late...hmmm.

Shelby is dealing with the itching that can come with liver disease. She's had it before and its taken new and larger doses of medication to control. Once again her medication has been upped and, hopefully, we don't have to add another one to the line-up. Cooling lotion spray and Benadryl have been a bit helpful, too. I've read that this type of itching is "the itch that you can never scratch." That's how Shelby describes it. She says that when she scratches, it doesn't take the itchies away. Fragrance-free, hypoallergenic, bathing every other day, etc. We know all the tricks for helping her out, but, unfortunately, they don't always work.

Riley is doing great! She wrote a poem for her Papa (you'll love it Dad!) and wants to try out for the school variety show. She will be Miley Cyrus tomorrow for trick-or-treating and Shelby will be Hannah Montana. Avery will be a lil' pumpkin (if she's feeling better).

Well, that's all for now. Time to try to settle Avery back down. HAPPY HALLOWEEN!

Sunday, October 26, 2008


So, things with Shelby have been going pretty well. But, Saturday afternoon when I came home from work she looked awful. She said she felt awful, but nowhere specific. She said she was o.k. enough to go to the pumpkin patch with me and Riley. We went; we had fun; she seemed alright. Then we got home and she wanted to just rest. I took her temp and it was in the 100-degree range. We called the on-call GI (Dr. Sheila) and she said she would do a direct admit. We were really torn on taking her in. She said she was hungry and ate some supper. Then she showered and her temp seemed to come down a bit, but before bed she looked like a ghost. We still waited on taking her in. She slept fine.

She woke up today and ran a really low-grade temp, but ate great and played up a storm. Again we decided to hold off on doing anything. She's excited at the thought of going back to school tomorrow. Let's pray that we made the right decision to not have her looked at and that she has a GREAT day tomorrow.

Avery is hive-free, but she' s also now on Zyrtec 2 times a day and not having anything with (cow) milk in it. She seems to have caught Riley's cold, but isn't coughing as much as she was. Let's hope that stays that way, too.

Here's to a calm, calm week. We need one.

Thursday, October 23, 2008

Never a Dull Moment

First of all, let me say that Shelby is improving. The diarrhea is slowing down, her spunk is back, but her color is weird. Not jaundice, not pale, just ick. Her stool culture from Sunday night came back negative for Shigella - Yea! And...nothing new grew (thanks for the "poop check" voice mail yesterday Moreena. What would us Liver Moms do without each other?!?! Hope your visit with Fabulous Frankie was wonderful!) She will go back to school when she has had "normal" BM's for 24 hours. She is currently pretending she is a dog named Sparkles and playing with Avery. She wants a puppy so very badly.

Thank you to everyone who has prayed for Shelby, e-mailed me, left messages on here, sent things in the mail (Lisa, your gift is awesome and very, very thoughtful!) and taken the time to ask how Shelby is doing. All is appreciated and helps us remember that no matter what we are facing in our lives, there are others there to hold us up.

So now for the new development...Avery broke out in hives yesterday. She was really crabby yesterday morning and when I unzipped her pj's, BOOM!, there they were. She has made the switch from her hypoallergenic formula to soy milk quite well. In fact, its been about a month now that she's just been on soy milk. But, last week we started slowly giving her foods with milk in them (baby goldfish crackers, to be exact). Now is that causing the hives - who knows! The Pediatrician wants her to take Zyrtec twice a day to keep them under control. They are by no means Shelby hives (which were full body, bad, bad, bad), but there none-the-less. We're keeping a close eye on her and, of course, have discontinued the "foods with milk in them" experiment.

These girls sure keep me on my toes, but, man-o-man do I love them!

Tuesday, October 21, 2008


Yes, that's right. We are home once again. The consensus was that the bleeding was from the Shigella. She's on oral antibiotics and getting her spunk back. Now we need to work on her appetite. Its good to be home.

Monday, October 20, 2008


11:27 a.m.
Here's the plan. The bleeding has stopped on its own as of now. She'll stay in tonight, labs will be re-drawn in the morning and we'll see how those & she look at that point. They know we've been bouncing back and forth so they're not eager to let her go until we have some answers or at least see her on the definite upswing. She looks pretty good, just wiped out. Its been a long week for her; for us all. Still, I am very thankful that she can receive her care here in Rockford, only blocks from our home and with family nearby to help with Riley & Avery. It could be a lot worse, but isn't. Thank you God.

Sunday, October 19, 2008

Back in the ER

7:24 p.m.
Shelby began having rectal bleeding today. This can come with Shigella, but not as you're getting better from it. I've talked a couple of times with the on-call GI and he suggested she get looked at. No fever, but only acting so-so. I'm sure labs and an IV are in her near future. She looks a bit pale and her tummy is still HUGE. I'll share details as I get them.
10:10 p.m.
IV's in, fluids being run, more bloody poop. Labs don't look horrible, though. She has the doctors mystified. I'm sure we're headed up to the Peds Unit for overnight. I'll do one last update for today in a bit.
12:41 a.m. (Technically, Monday, I know)
In her room on the Peds Unit. IV fluids and antibiotics running...we'll see what tomorrow brings. She's on a clear liquid diet and NOT happy about it. When you're hungry popsicles, ice chips and juice just don't cut it. I feel so bad for her. Her IV is now the 3rd little dot on her arm. They're all lined up in a row. Its a great vein and a great spot so that she can mostly still use her left hand, but, poor little arm. Her right arm has bruises from blood draws....ah...we just want our little girl better. Please pray for that. Thank you.

Friday, October 17, 2008

(I just can't think of a title today)

1:40 p.m.
So...Shelby slept great once she fell asleep at Midnight! Her wonderful nurse Heather managed to sneak in this morning and draw her labs off her IV without waking her - go Heather! I wonder what her plan was if Shelby caught her...Anyway, it was very nice that her little bruised arms didn't have to get another needle stuck in them today. Labs are o.k.; of course her ANC took a nosedive, but, hey, we're used to that now. We are just waiting on the GI on-call (not our beloved Dr. Deutsch) to decide what the game plan is. She is less yellow today, eating some and drinking a bit, but the diarrhea just keeps on comin' and comin'.....Scott is with her right now and I'm home with Baby A so she can nap. Grammie & Papa are awesome and she loves them so much, but she needed some Mommy & Daddy time. I don't know who was more excited to see each other this morning, Avery or me?!?! I'm going to try to do laundry and general keep-your-house-from-looking-like-a-bomb-went-off stuff. I'll let you know when we know what's going on. Please pray that she gets over this quickly!
8:32 p.m.
Home. Discharged. Broke out of jail again. On a different antibiotic now that is supposed to be more sensitive to Shigella. But, if she has a temp again or is acting like she was yesterday, back to the ER we go. Tonight, as she was getting undressed for her bath, I noticed that her tummy is HUGE. I measured it in a couple of spots. We'll see what it measures tomorrow. Please, prayers for no re-admits. Thank you.

Thursday, October 16, 2008

What will today bring?

1:25 p.m.
Waiting. I hate doing that. I'm waiting to hear from Dr. Deutsch. Shelby woke up today with a fever, just wanting to lay around and tummy pain so bad she would cry out when it would hurt. Is it just the Shigella running its course? I don't know. She hasn't eaten, nor had much to drink. She is working on some ice chips right now at least. I'm worried about dehydration from all the poopin' she's been doin'. O.k., so I had to make that sound a little funny; I have to be entertained somehow while I WAIT. She looks more yellow than Sunday, too. I'm waiting...
2:59 p.m.
I waited and heard back from my very most favorite nurse Karin. We're in the ER right now getting labs done and checking for dehydration. She's still just laying there. NOT my energetic 6 1/2-year-old that was driving me nuts yesterday. I'd give anything for her to be driving me nuts right now instead of waiting for a nurse to come and stick a needle in her arm.
5:20 p.m.
We wait. Labs have been drawn, fluids are pumping in her, Disney Channel is on. It is a very noisy, not in a good way, ER tonight. Screaming adults, crying babies - we have the TV cranked to try to drown out the noise. She still has a fever, but is eating ice chips.
6:43 p.m.
We wait...for a room upstairs. She's going to be admitted overnight for hydration and "fine-tuning." Her bili is up even more than Sunday - Mommy's instinct was right! Its at 4 now. Her ANC is normal and her WBC is up - normal, but elevated for her - due to the bacteria. Dr. Deutsch came in and poked around on her belly and said its the darn Shigella, but that getting fluids and IV antibiotics will be good for her.
11:00 p.m.
Finally we are all settled into our room. We have our wonderful nurse, Heather, who said, as Shelby was being discharged "I won't see you because I don't work again until Friday." Ta-da, we're here! The dry-erase board in Shelby's room says "Welcome Back!" More blood had to be drawn for cultures as they did not take enough in the ER and more stool samples collected. Her "bands" (part of her blood cells) are up and that isn't good. They'll draw more blood in the morning and are checking to make sure a secondary infection hasn't popped up. Sigh...she is perkier with the fluids running, though.:)
Last update for tonight...

Wednesday, October 15, 2008

Goodbye earth-friendly cleaning...see you in a while

Something actually grew (for once) out of Shelby's cultures. Her stool culture came back positive for Shigella. YUCK!!! Its probably what we've all been dealing with for the past couple of weeks now. Scott & I are getting tested tomorrow as we're having minor symptoms still.

As for my title, I know and believe that my natural cleaning methods have been doing a good job and Shelby (or whichever one of us) picked this up somewhere out THERE, you know in the great big world, but the Mommy part of me has kicked in and said "KILL IT ALL. ALL THE BUGS. KILL THEM WITH BLEACH!!!!!!!!" So, I am. The stored leftover bleach has been brought out; I purchased clorox wipes and bleach-containing toliet bowl cleaner. My beautifully grown out fingernails have been hacked off. I don't want anywhere for those germs to hang out. I'm on the hunt tonight...the hunt for those invisible germs that made my girl sick. Wish me luck...

Tuesday, October 14, 2008


Avery and I just brought Shelby and Daddy home. What did she have? Who knows. She is on "house arrest" for 2 days and labs will be repeated. As long as she keeps getting better, we'll just chalk it up to a virus. She will be on antibiotics for 8 days to make sure to kick anything that could or might be brewing.


Monday, October 13, 2008

A Sister's Love

So I finally got around to unloading my memory card from my camera. Check out these awesome pictures. This is how we found Riley & Shelby sleeping one night not too long ago. Riley is watching over Shelby, even in her sleep. So sweet.

Day 1 Inpatient

Despite perking up last night and finding new energy, Shelby did fall asleep before midnight. Her fever broke and she did great throughout the night getting her IV flushed (she hates that) and hooked up. She also did FANTASTIC at her 7:15 a.m. blood draw; from her arm, NOT her IV. Her choice. She would much rather only have things going in her IV, NOT coming out. Her tummy hurts quite a bit today and it is a struggle to get her to eat. She is now on neutropenic precaution as her ANC is now below 1000 - in the 800's, actually. Daddy has spent all day with her because I had to take Avery for a GI check-up (she still has GERD) and then I had a doctor's appointment (dx.=tension headaches and hives from, you guessed it, stress!) and I got my flu shot. It hurt a lot - I'm a wimp so don't tell my extra brave strong kid - she'll make fun of me! Anyway....Scott is staying with her tonight, too, as Avery is home and he can't be left alone with her overnight - you know, that whole lifting her thing is still out of the question with his shoulder. Its killing me to be away from my Shel-belle while she's in Club Med and I miss her so much! Tomorrow a.m. they'll draw labs again and we'll go from there. We're hoping for liver numbers, particularly her biliruben, to improve so she can get sprung from there. Thanks for the prayers and please keep them coming.

Sunday, October 12, 2008

Shelby in ER

1:35 p.m.
Right now I'm in the RMH ER with Shelby. She woke up this morning with tummy pain and a temp of 102. So we wait...please say some prayers for her. I'll update when I know more.
2:25 p.m.
Please pray for Emerson. Thing
s were going so well for her and have taken a bad, bad turn. Shelby has given a urine sample and has her EMLA placed for her IV. Once they get that in labs will be done. She is feeling rotten.
3:17 p.m
IV is in and she is getting fluids. N
ow we wait for lab results.

6:17 p.m.
Shelby is being admitted. Her fever is still at 102 and her liver numbers are quite elevated. She is on Zosyn (IV antibiotic) and feels worse than when we got here.
8:15 p.m.
She's in her room all tucked under blankets as she's been shivering. Her temp is still hanging out around 101-102 despite the tylenol. She's having some diarrhea and is thirsty and hungry. She's been having ice chips and Daddy is bringing some brown rice from home for her to eat. She just keeps looking worse and worse. I have a feeling we (Scott and me) will both be spending the night with her. Avery and Riley are at Grammie's. Please say a prayer for peace for Riley as she gets so worried when her little sister gets sick. Thank you.
10:05 p.m.
A dose of Motrin was given to her and, wow, what a change we've seen. She's eaten some rice, a popsicle and some jello. She was telling knock-knock jokes to the hospitalist and being very charming. Her temp is now in the 99 range. Her tummy still hurts and they are culturing her stools for all sorts of fun stuff. They'll draw LFT's (liver function tests) in the morning and we'll go from there. Thank you for the prayers. Unless she gets worse, this will be my last update for the evening.

Wednesday, October 08, 2008

Moreena' Birthday present

Today is Moreena's birthday. Today her daughter is going to receive the ultimate gift - the Gift of Life. Annika got called for her 3rd liver transplant. Please pray for this sweet little girl and her family. She has endured so, so much. Once the surgery begins it could take up to 18 hours. Pray for the surgeons to have skillful hands, the nurses to be sharp and on top of things and for peace for Anni's parents as they wait. Also peace and prayers to the donor family as they made such an important and wonderful decision in their time of sorrow.

Friday, October 03, 2008

A Sister's Heart

The good 'ole stomach bug has hit our house this week. It started off with Shelby & Scott. I thought Shelby's could possibly be that we backed off on her Miralax and that Scott's was his pain meds giving him trouble. Wrong. I developed it yesterday afternoon and Avery woke up at 2 a.m. vomiting and proceeded to on-and-off (more on than off) for the next 4 1/2 hours. Then, today I got a call from the girls' school that Riley's stomach hurt. Fun. Avery is quite perky again, but very tired and not quite back to eating and drinking again. So far Riley has managed to keep everything in. Shelby is having trouble from backing off on her Miralax, but we think she also had a touch of it earlier this week. We are to up her dose again and get things a movin' more, if you know what I mean. If her on-and-off tummy pains don't subside in a couple weeks then we may have to start treating her lactose intolerance as a milk allergy. Fun again.

Anywhoo...Riley is so affected when Shelby is sick. She remembers many of Shelby's hospital stays and late or middle of the night trips to the ER. Shelby not feeling the slightest bit o.k. really upsets my Riley. Thank God she has an outlet for her feelings in writing. I hope that her writings prove to always be helpful and healing for her. This is her latest song since Shelby was not feeling well.

When you're close and near
I want to shed a tear
Why was a child like you stuck with this?
I know you're in pain
The hospital's your game...
I miss you
I want you near
I miss you.

Speaking of children in pain and who have seen too much of hospital life...please pray for Annika. She is listed for her 3rd liver transplant. Pray that she receives her perfect gift soon.