Monday, November 30, 2009


11:32 p.m.
Ascites the same as yesterday - no increase. Labs pretty "stable," but wbc has dropped enough to make her neutropenic. Neutropenic precautions are on her door now. Miralax was given to see if some stool is "backed up," but she's been going already...and a lot. I'm not sure if that's the answer, but right now she's sleeping so we'll go with that and see what the morning brings.

9:04 p.m.
I arrived at the hospital about an hour ago and noticed that Shelby looked different than when I left around 1 p.m. Her face is swollen and her tummy is HUGE. It measures 7 cm larger than yesterday and she weighs 1.2 kilos more than when we came in. Labs have been ordered stat and she'll be having an ultrasound here shortly. Crap, crap, crap....pray, pray, pray please. This is most likely ascites. I'll update when I can.

12:25 p.m.
Shelby decided last night that she wanted to go home so sleep was very hard to come by. She cried herself to sleep and then was up for the day at 4 a.m. A nap is definitely coming soon for her, but not for me as I will be heading off to work soon. Scott took the day off and is here until I come back to stay the night. I really can't wait to go to my Mom's after work to spend time with my Riley and Avery.

Not much has changed on the medical front. We still don't know what is causing all this. Her tummy still hurts, but she is able to eat. Her fever was gone this morning. I'll update again tonight. Prayers please...thanks.

Sunday, November 29, 2009


6:22 p.m.
She's been started on Vanco and Zosyn. We'll be here at least 48 hours waiting on cultures. What was seen on the CT may just explain Dr. Deutsch's suspicion of IBS. The fever, though...we still don't know what's causing that. Daddy left for the night to be home with our very sad, Riley, and Avery, who could care less what's going on. Prayers for my middle and big girls that they deal with this admission as well as they can. Because of H1N1, the hospital restricts all visitors other than parents and grandparents. Riley is NOT happy about that. Prayers please, too, that Scott & I can juggle our work schedules and his school schedule. Sigh.

4:12 p.m.
Up on the Peds floor. Waiting to see doctor, but Shelby can eat now, so she is a bit happier.

2:31 p.m.
CT scans shows ascites, thickening of the lining of the bowel and inflammation of the
mesentery. Ummm...I hope I got that right. They are deciding which IV antibiotic to put her on. I really don't know what all that means...I'll let you know when I do.

1:14 p.m.
They should be coming anytime now to get her for her CT. Tylenol helped for a bit, but now she's getting miserable again. Labs show there's probably an infection. Where, though, is the question. She will be admitted after the CT results are in. Poor kid.

12:20 p.m.
Shelby woke me this morning w/bad abdominal pain and she was running a temp of 103. We're in the RMH ER. IV is in, labs run, urine collected, CT contrast drank, IV Zofran 1 p.m. they're going to come get her for an abdominal CT. Her pain is pretty high up there on the smiley-face scale. She looks rough. I'm sure she'll be admitted.

Grammie & Riley,
Can you whip up a hospital gown for Ruthie? See Ruthie's IV? Shelby did that.

Wednesday, November 25, 2009

Late update

Is it really Wednesday already?!?! Sorry for the "update tomorrow..." and then leaving you hanging. Dr. Deutsch thinks Shelby might have IBS, and switched her medication to Bentyl - kinda the same as Levsin, but works a little differently. She had a good day yesterday, with minimal pain. We are praying for more days like that!

Everyone have a Happy Thanksgiving! We (minus Shelby) are looking forward to eating my Mom's yummy food! Shelby has already declared she doesn't like Thanksgiving b/c she doesn't want to eat the food. Poor kid! My Mom is making Shelby friendly (dairy-free) food, but the kid probably won't even try it. Scott and I are meeting with Shelby's beloved psychologist, Dr. Jill, in Chicago, on Friday to talk about how to tackle this growing problem. She really has a love/hate relationship with food and is way, way too young to have eating "problems." Wish us luck and please say a prayer that we can come up with some good solutions! Take care!

Sunday, November 22, 2009

Sunday update

I think we have Shelby's abdominal pain under control, but now we need to investigate the "why." Why is this happening, what caused all this pain, why and will she continue the (now increased dose of) Levsin. Dr. Deutsch wants to see her tomorrow. I feel like this was all brought on by the medication given last week and now we are giving medication to do just the opposite - like her little intestines went in overdrive with the cramping and then didn't stop when the medication was stopped, thus leading to her being on medication to stop those cramps...but, its just going to lead her back to square one - the constipation and pain from that. I have been researching away about this. All I can find is that it can happen in (usually older) pediatric liver disease patients. Doctors can really never pinpoint a cause, nor quite find the medication to treat it. You just end up with a very miserable feeling kid until something else pushes them to transplant. Great. What a wonderful prognosis, but, of course, that's just the Dr. Mom diagnosis. I guess I'll let the real doctors have their hand at her, but I will fight and scream to get my kid out of pain!

Update tomorrow...

Friday, November 20, 2009

Shelby's tummy

So I've written about Shelby being "backed-up." Her tummy problems subsided for about 4 days and then started up again. This kid was not only having on-and-off abdominal pain, but also was just looking wiped out. She went to school on Monday, but ended up in the nurse's office with tummy pain in the afternoon. I picked her up from school and took her to her GI doctor. He presribed a new medication to help her go to the bathroom and she's pretty much had pain since. Cramping, especially after she eats or takes the med. I have not given it to her this morning, but she is still not feeling well. I'm waiting on a call back from the doctor. [[sigh]]

Three weeks from today, we'll be on Shelby's Make-A-Wish trip!!! Let's hope we can get this resolved by then....

8:22 p.m. update
Doctor prescribed Levsin and said to give her tylenol. In a few hours she's "supposed" to feel better. Let's see...

Sunday, November 15, 2009

10 years ago...

I was starting to feel like a med-free labor may not be the route I was going to be taking. So far, walking, rocking and sitting in the tub were helping manage my labor. But, the nurse kept making me get out of the tub every so often so I could be hooked up to the monitors to make sure the baby was tolerating labor o.k. I was dilated to 5 cm...that's it! I had been at 1-2 cm for weeks and after 12 hours of labor (not hard, though...that's when my water broke) I was only at 5! What a rotten deal! Finally, there was just a time that I got out of the tub and didn't want to go back in. I asked for something to help with the pain. No epidural, though. I am pretty sure they gave me dilaudid for the pain. It worked. I felt all out-of-it, but was aware of things. I really could have cared less what was happening, but at one point remembered thinking "I don't want to feel this way when they hand me my baby." My dose was wearing off around 11 p.m. I did not want another one and that was just fine because I fully dilated in those 2 hours. It was an easy delivery with only 5 pushes to get her out. She was gorgeous!
And still is....

Happy 10th Birthday my first-born! I love you so much!

Wednesday, November 11, 2009


So, when Shelby is a teenager she is going to shoot me for writing about all took 22 capfuls of Miralax and a follow-up x-ray to make sure she was "cleaned out." Twenty-two.....22!!!!!!!!! How does this happen when the kid is already on a daily maintenance does of this stuff?!?!?!? We will be monitoring her bathroom habits much closer to make sure this doesn't happen this bad again.

Today Avery will get her H1N1 vaccination. Its has been so wonderful to have her back to her old self!

No one has to go to work today and there's no school. Riley and I will be birthday party shopping, but otherwise we hope for a very relaxing day :-)

Friday, November 06, 2009

Avery update; Shelby's tummy; Riley, a decade?

So, little Miss Avery finally started acting like herself after today's nap. She has not had a fever since Sunday, but, boy-o-boy, had a rough week. Now we have a 2 1/2-year-old who is very off her schedule. We'll get her back on track soon...I hope.

Shelby started having abdominal pain yesterday at school. She is on Tamiflu and she and Riley did get their H1N1 vaccinations yesterday morning, but I wasn't convinced that either of those had any thing to do with her tummy pain. Her abdomen was very distended so today I decided to have her looked at. An abdominal x-ray was ordered before we saw Dr. Deutsch's NP and, guess what, she's "backed up" AGAIN. So we (and I mean Grammie as Scott was working and I had a meeting) got to come home and start a "clean out." Its 10:18 p.m - she's had 5 capful's of Miralax and only pooped a little. Sorry to be so graphic. Tomorrow will be a long day, too, for her as we need to do the "clean out" again since we didn't accomplish much with the 1st round. She hates "clean outs" and I don't blame her one bit! Poor kid!

Riley...Riley....Riley...will be 10 in 9 days. No way - it just can't be! My 1st baby - 10! Yikes!

Monday, November 02, 2009

On the upswing?

I hesitate to write that title, but after sleeping for 21 hours, Avery woke and stayed awake around 7:30 this morning. She is very congested and is running a really low-grade temp on-and-off, but is much better compared to yesterday. Go Away Flu!

Sunday, November 01, 2009

I HATE the flu!

9:21 p.m.
When Avery was going on almost 9 hours of sleeping, only waking briefly to change positions, we decided it was time for convenient care. What a waste of time. We are concerned about dehydration. We changed her first diaper at about 6:30 p.m. and it wasn't very wet. She did test positive for Influenza type A (no surprise there!) and they said her tonsils looked questionable, but couldn't get a good culture swab. The doctor said give it until tomorrow and then she might need to be admitted for fluids. I'm thinking, why wait, but I will be patient unless she worsens in the night.

Please send prayers to my baby.

10:49 a.m.
Shelby's temp keeps coming and going. She has a cough that comes and goes. She's on Day #3 of Tamiflu.

Scott seems backs to normal.

Avery...Avery, Avery, Avery. She bounced back on Friday, but her congestion slowly got worse. Today she woke up running a temp again and not looking good. I called the on-call Ped and she said unless she is having trouble breathing, do not take her in to be seen. Nothing can be done for her - too late to start the Tamiflu. This is scary stuff. I asked "how do I know when she's over it?" She replied "When she is symptom and fever-free for 2-3 days." Yikes! {{Sigh}} Back to sitting with my sick baby.