Matthiessen Falls

When you're sick and tired of being cooped up, this is what you do. We got up this morning and decided we needed to get Shelby out of the house (more than just to Grammie & Papa's house). I made a call to my friend, Moreena, inquiring about this place as she and her girls went there not too long ago. They headed north and we headed south and met up at Matthiessen State Park. We had a great time! Enjoy the pics!

HOME

8:32 p.m.
We came home early this afternoon. As of right now, the plan is 2 more days of IV antibiotics and weekly injections (at home :-O) of G-CSF done by us (:-O :-O). Home health came and gave us a review on running the meds. She's on her 2nd dose already. One thing we're watching, though, is her temp. She just looks "off," and her temp is 99.9. Not high, but it has been in the 97-98 range for days now. It better not get any higher as her ANC is still only in the 300's. I added more pictures to the May RMH 2010 album.

So behind

Let's see...a recap since Saturday. Shelby's ANC was at 900, but promptly fell on Sunday to the 300's again and has remained there ever since. Hopefully the docs here will hear from the docs in Chicago regarding what dose of G-CSF to put Shelby on. Sounds like they want her to have a dose weekly all summer. I don't know yet if they will be shots (at home :-o) or infusions in the hospital. At least there's somewhat of a plan. There has to be. She has a wbc of 0.9. (((Sigh)))

Saturday

11:46 p.m.
Oh yeah, found out that her 1-week-after-starting-Elavil (for chronic abdominal pain=functional pain) EKG showed even a more prolonged QT interval than the baseline one. Great. So her dose has been cut from 25 mg to 15 mg. She'll have another EKG probably on Monday to see if that has improved.

Hmmm, now I'm thinking I never "talked" about the prolonged QT interval. Well, it can happen when you're on Elavil and Shelby's was slightly prolonged to begin with so it took the docs (several of them) a while to decided whether or not she should even start the med. Its not a side effect I'm thrilled about at all.

5:39 p.m.
I asked the doctor if I could gown, glove and mask Shelby and take her OUTSIDE in the wagon for a bit and she said "O.k." THANK YOU! We spent just under an hour out of her room. It was good medicine! I added the pics of it to the album I referenced in the earlier post.

1:08 p.m.
Super Grammie spent the night with Shelby so this Mama could sleep in her own bed and love up her peeps! It was wonderful! The PICC line placement went fabulous. Her wbc dropped to 1.1 and her ANC is at 380. Grrrrr! Those numbers need to get their act together. I'll be heading up to RMH soon to relieve Super Grammie and then Daddy will be spending the night up there. Riley and Avery were super medicine for Mommy's soul! I love my girls! Snuggling with Scott wasn't too bad, either :-o :-)

Go to Wednesday's post to see pics updates. I keep adding them to that album. Here is a pic, though of her PICC line.

Friday

12:03 p.m.
I can't believe its Noon already! Where has the morning gone?!?! We had a nice visit from Grammie, Avery, Grandma Nea and Papa DD as they did the Avery "switch-off" here at the hospital. Avery kept Aunt Lori busy all day yesterday and now today she'll run Grandma Nea and Papa DD ragged :-). This evening Grammie will spend the night with Shelby - she is so excited and keeps telling everyone about it!

She will have a PICC line placed sometime this afternoon after 2:30. She is not thrilled about it, but I think understands pretty well (for being 8 years old, at least) how hard it is to get to her veins now. She is not looking forward to the procedure, but will at least get sedated for it. She knows once its in, no more pokes for quite a while :-).

Riley is hanging in there good with school to keep her busy, but the weekend will be tough. Hopefully a good dose of being at home with Mommy & Daddy tonight will help. Please keep her in your prayers as it is so hard for her to work through all the feelings that Shelby's hospitalizations bring about. I don't talk about her as much as Shelby, but she is amazing. Just amazing. Brilliant and beautiful. My Ri.

Scott will finish up his first week of training here at RMH today - he is just a floor above us, in the same wing! This has been a trying week for us all as I am wrapping up the loose ends of my afterschool program, he is starting a new job and we are trying to make things as "normal" as possible for Riley and Avery.

Shelby's ANC fell again today, but her wbc went up. Huh? I don't know. If I could explain the whole white blood cell situation in layman's terms, I would. All I can provide is the links I already have.

Please continue to pray for her.

Lost in the "hospital time-zone"

I was just going to update my last post, but it hit me that I didn't do that today, but yesterday. Geesh! What day is it?!?!?!

The Game Plan: Treat her as if she has cholangitis. That means, on IV meds until Monday, then home on oral antibiotics for 2 weeks. If her wbc doesn't start shaping up even more, then a G-CSF infusion will be considered. Today it was 1.0 and her ANC was 290. A tad bit better, but still severely neutropenic.

We've been busy decorating her hospital room with a garden theme. Enjoy the pics!

May 2010 RMH

Tuesday update

Shelby continued to have a fever until late this afternoon. Her white blood cell count (wbc) is almost non-existent at .6 (or 600 for many of you) and her absolute neutrophil count (ANC) is 204. She is severely neutropenic therefore she is at very high risk for catching ANYTHING. ARGH! Tomorrow Hematology will be consulted. As of right now, nothing has grown on her new cultures and she has tested negative for tons of viruses.

This is scary. Please pray that Shelby's numbers improve or that the doctors can figure out a way to help her.

Seriously?

6:41 p.m.
Shelby had a direct admit to RMH about an hour ago because she spiked a temp of 101.6. We are still going through the admitting process; she is answering questions for the student doctor. She is giving him a good education. :-)

Colette

This is Shelby with her favorite RMH Child Life Specialist, Colette. Colette is the best medicine for Shelby; much better than any meds they put in her IV! Colette always has time for my (often demanding) daughter despite having a whole floor full of kids. She makes time for them all. Shelby usually ends up cooped up in her room because of neutropenic precautions, but is still a bundle of energy. We can't thank Colette enough for how important of a role she plays in making Shelby's inpatient stays as bearable (and fun) as possible. She is always patient; she wears many hats. I've seen her sterilizing toys, entertaining a baby without any family to comfort it, going into the procedure room with a child who is about ready to feel some pain, appeasing my 3-year-old who thinks every little ride-on bike is "too hard," training (if they'll listen!) the student doctors in the ways they should and should not interact with patients and taking a ton of teasing from my husband about her being a Bears (yuk) fan. Thanks Colette. Thank you.

Sunday

7:28 p.m.
HOME!!!!!!!!
Still neutropenic, having intermittent tummy pain and liver numbers elevated, but cultures came back NEGATIVE so that's good, good, good. We have her on "house arrest" for a few days until her numbers improve.

It is wonderful to be sitting on my couch with my peeps :-) :-) :-)

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.