Thursday

The PICC line

Getting her infusion this morning. She felt the need to get all dolled up with her fake ponytail and all.

6:10 p.m.
All is fine. Shelby's med has run o.k., Riley was fever-free and back to school, Scott got one of his make-up sessions completed and I got an antibiotic for a throat infection. Of course, that makes it all sound so smooth...it wasn't. Riley really did not want to go to school because "you just got my sister home to me and now you're making me leave her!" We talked a lot and there were many tears before I finally got her to school (late!) this morning. Scott's make-up session meant that he sat by himself in a room with a homework packet for a little over 3 hours and antibiotics and I don't mix intestinally-wise if you know what I mean. So, for now I'm feeling worse than better, but am hopeful that I'll be able to swallow without cringing in the next 24 hours.

No word on the biopsy. That's o.k. I didn't want to think about it today. I'm just enjoying being HOME.

Wednesday

1:58 a.m.
So far, so good - that is, for her PICC line infusion. This is the first one on our own since the nurse came today. I just woke Shelby up, moved her to the couch and she fell right back asleep. I thought I'd catch up on e-mails and stuff the 45 minutes while her med is running.

We were overjoyed to be reunited as a family. Words cannot describe it. So glad to be HOME.

11:52 a.m.
So, here's the news. It is not a complete answer because they need more testing. So the mass does not look fluid-filled (which would be good). It does appear solid (not good), but they need to take a biopsy to know what it is. It is 1-2 cm (small) and on the back side of her liver. Whether or not it can be biopsied with a needle or an open biopsy needs to be done has yet to be determined. They will talk to IR (Interventional Radiology) to see if they think they can reach it with a needle. They do want to be proactive about getting this biopsy done. This is nothing to sit on. In the next week or so she'll have the biopsy. We are bustin' outta here, though. Her IV med is running for 1/2 an hour and then we're gone.

Our hearts are heavy and full of worry...
10:57 a.m.
So we were told this morning that the "team" was going to sit down and go over her MRI results...at 9:30. Still no word. We still wait. The plan was to be discharged by 10 a.m. to make it home in time for Scott's clinicals at 1 p.m. Now that's not going to happen. In fact, depending on the MRI results she may not be discharged at all. They may want a biopsy of the mass. Sigh, sigh, sigh.

I came down with something last night. Most likely what Riley is at home with. A fever of 100, chills, achy...miserable. I'm a bit better today, but still not feeling good.

We did have a consult with Hematology about the GCSF (neupogen) infusions. They are not recommending them. Although her ANC runs low, they looked back at her labs and said that they do rebound on their own so they do not want to start something with as many possible side effects as GCSF. We are to follow-up with them in clinic in 3-4 weeks. One more specialist...

Tuesday - MRI Day

5:37 p.m.
We've been back at the room since about 4 o'clock. The MRI went well. They did put in a breathing tube as they needed to "make" her hold her breath for certain pictures. She's awake, but content laying in bed and watching SpongeBob. Dr. Superina already came in...but, we still don't have "THE" news. He said he needs to sit down with the radiologist and go over her films. He pulled them up on the computer and showed us that in some the images it looks fluid-filled, but it some it doesn't. ARRRRGGGH! I gave him my best puppy dog look and asked if he could give me some medication to sleep another night without an answer. In the morning he said he would come see us, but we'll probably be discharged by then. They're planning on cutting us loose by 10 a.m. Home health is already scheduled to come to our house at 5 p.m. tomorrow. We wait some more...:-(
2:16 p.m.
She's finally having the MRI done. Only a few hours later than expected - ha, ha! That's how it goes. They gave her some medication through her PICC line and off to snooze-land she went.

Here's how funny this kid is. When we were moved down to MRI and they were asking all sorts of questions Shelby told them her name was not Shelby Martin (hoping to get out of the test b/c they'd think they had the wrong kid). When they asked what her name was, she hesitated and replied "Emma Carrotpoo." So, they kept referring to her as Emma/Shelby. Too funny...now we wait and worry and wonder and...more later.

By the way, the birthday boy made it here safely and is now sitting across the table from me studying.
7:50 a.m.
We actually slept pretty good for being in a hospital. Shelby is feeling fine. All is still go for her MRI to be at 10:30 a.m. and I am still hearing that we will hear the results today. Scott will be heading in soon to join us for the day - and its his birthday. HAPPY BIRTHDAY! I miss my Riley & Avery sssssooo bad. I'll keep this short as Shelby is waiting to play on the computer. I'll update when I have anything new to report.

Monday

4:54 p.m.
Surprise, surprise...the PICC line is in! Shelby did fantastic (from what I hear - I was not allowed in the room...grrrrr). She seemed very chipper when I got to see her afterwards so I will take it at our awesome child life specialist's word. She did get to go back with her (Thank You!). Except for confusion in the its going to happen, its not going to happen, its going to happen...well it happened. Its in. She is doing really good.

I finally got a shower in and am thankful for that. My Riley has been home all day with a temp in the 100-range. Sound familiar? Yeah, well when you don't have liver disease it just means staying home and riding it out...but this Mommy should be snuggling on the couch with her - sigh.

We're trying to nail down a time for her MRI so Scott knows when to come in tomorrow. I'll update later...

12:58 p.m.
Dr. Ekong (she is great Becca!) came in and gave me the game plan. They DO NOT think it is a UTI or kidney infection. Just not enough bacteria to indicate that. But it does not look like her fever was related to her cold, either. So, as of right now, she is being treated for suspected cholangitis. Usually their plan of attack is to biopsy then treat w/6 weeks of IV antibiotics if the biopsy shows the Big "C." Since she's already been on antibiotics, but her biliruben has gone up, they will treat w/2 weeks IV antibiotics, we'll return to clinic in a few weeks, have the PICC line removed and see what happens then. Yes, she'll have a PICC line put in while she's under for her MRI tomorrow. We're still looking at being here until Thursday, but going home w/a PICC line instead of staying here for 2 weeks sounds just fine to us.

10:38 a.m.
Finally, we got some sleep. I questioned her sharing a room due to her neutropenia and they moved us to our own room. I said it could wait until morning, but they move fast around here. So, at 4 .m. I was told to not get too comfy b/c we were moving and around 5:15 the actual move happened. Then an hour later, her IV alarm was going off - ah, the joys (not!) of sleeping in a hospital. I think from about 6:30-8 we got some solid sleep. At 8 a.m. the lab tech was in here to draw blood - not off her IV - no EMLA. Shelby was not happy, but it was quick and he was good. Tomorrow we will be prepared with numbing cream. I've already spoken to the nurse about that. We still haven't seen the doctor today, yet, but she is being treated with Gentamyacin and Zosyn. They're going in with the big guns to knock out whatever's been causing trouble. Good news is that she's been fever-free since we arrived here. I'm hoping to catch a few zzz's here soon.

Riley is running a low-grade temp, but Grandma Nea is keeping a close eye on her. Sounds like Avery is doing good being her usual toddler self. Scott is exhausted! After taking me back to the ER last night (after I came home to pack) he had to come home and do some homework that's due tonight. This morning he has his CNA classes, then goes straight to his "make-up" clinicals (since he'll be missing tomorrow) for 2 hours, home for a bit and then off to Anatomy & Physiology until 8:40 p.m. Poor guy! He has an A & P test Wednesday night so tonight's lecture is very important. Tomorrow he'll be joining us for Shelby's test. We still don't know what time that will be.

{{Sigh}} Missing home, Scott, my Riley and Baby A.

In the ER (again)

3:15 a.m.
I don't like riding in an ambulance. Shelby does. She thinks its cool. Of course, she slept for all but, maybe, 15 minutes of the ride. We're settled somewhat. Shelby wants to go home. We are spoiled in Rockford with single rooms; here we have a roommate. Its just different, you know. Not what we're used to. I guess in the morning we'll see what the game plan is...
12:08 a.m.
Our ambulance is here to transport us to Chicago. This is all new to us. I'll update when we arrive and are settled in our room.
10:12 p.m.
Change of plans. The hospitalist here thinks it would be best if Shelby is transferred to Chicago. Calls are being made by the ER doc. We are scrambling...I totally didn't expect this.
9:40 p.m.
Being admitted. Turns out the bacteria for her (now upgraded to) kidney infection does not respond to anything in the penicillin family. It only responds to the antibiotics that she's allergic to :-(. There is an antibiotic she can take, but it only comes in IV form. So, that's the plan. Because of her test on Tuesday, they may try while she's inpatient to give her one of the antibiotics she's allergic to and see how she reacts - scary! Now we wait to be moved upstairs.
6:57 p.m.
Shelby's temp has not gone lower than 100 since Thursday evening. It should since she's on an antibiotic. I have her back in the ER to be checked out. We have to get rid of this fever for her to have her MRI on Tuesday! More updates to come...

Another curve ball

2:06 a.m.
HOME and in bed. She's on 5 days of antibiotic for her UTI. Phew! Prayers for smooth sailing so she can get her MRI done on Tuesday.

1:05 a.m.
Welllllll...Shelby woke up with a temp of 100 this morning. Avery had her 2-year check-up with the pediatrician this morning so I called and they could see Shelby, too. Everything looked o.k. Seemed as if she had caught my cold, but we were to watch her temp. She felt so-so all day; ate so-so; just ached all over. Her temp kept climbing and when it hit 102.9 Scott & I decided it was time for her to be checked out. So, we're in the ER. We came here around 10:30 p.m. Blood has been drawn, urine collected and chest x-ray taken. We are just waiting to hear the results. ***Doctor just came in. So far her WBC is 3.2 (that's pretty good for Shelby), chest x-ray is good, she DOES have a urinary tract infection, though. We'll see what the rest of the labs say...

MRI scheduled

Shelby's MRI of her liver will be this Tuesday, April 21st at Children's Memorial in Chicago. It will be done with general anesthesia. They'll call the day before to tell us what time it is scheduled for. This happens to be Scott's birthday. Please pray that he gets great news on his 42nd birthday. Please, please keep the prayers coming. We sure can use them.

By the way, neither Riley or Shelby knows anything about this test and we would like to keep it that way until Sunday afternoon when we sit down and tell them that the doctors need another picture of Shelby's insides. Please help us keep this quiet from them. Any test Shelby has gets Riley worked up and Shelby will be none-too-pleased to know that she has to have "sleep medicine" again. Thank you.

Also, please say extra prayers for my Uncle Freddie as he is hospitalized with pneumonia and Emerson, who received her 2nd "gift of life." You can link to both their blogs in the right-hand column.

Surgeon not pleased with CT results

Our joy and excitement has ended. We heard from the surgeon and he believes that the angle in which the CT was taken just did not show the lesion/tumor/mass - whatever you want to call it. He has ordered an MR of the liver (the same as an MRI, I think?) under general anesthesia at Children's Memorial. We will hear from the nurse tomorrow on when it will be scheduled, but could be some time this week or early next.

We are sick again with worry.

Please, please pray.

BRAGGING!

Go ahead, click on it and make it bigger! See what I'm so excited about. He's 1st in his class (after falling a few spots) and kicking butt! GO SCOTT!!!!! I'm so proud of you!!!!!!!!!!!

Easter

Easter 2009 Avery's 2nd Birthday

I'm 2 now!!!

I LOVE BIRTHDAY CAKE!

So, to continue my story. I had my midwife appointment and it was determined that I was dilated to 4 cm so it was a "go" for that day. My membranes were stripped (not fun!) and we headed home to grab our bags and head over to the hospital. At the hospital my water was broken and my hopes of hypnobirthing were thrown out the window once I reached 7 cm. I really wanted that epidural. It went in and Avery showed up minutes later.

She is such a wonderful part of our family. I'm so happy she's ours.

More pics to come. We spent the day at the American Girl Store and at an appointment in Chicago and then I started feeling sick on the way home. My throat is killing me and I ache and just feel blah. When I feel better there will be more pictures.

2 years ago tonight..

I was lying on the couch MISERABLE. I was only 37 weeks pregnant with Avery, but measuring the size of someone 44 weeks pregnant! I didn't even know that that was possible. I could not sleep; it really stunk. I just wanted to have my baby! I had a appointment the next morning with my midwife and I was really hoping that she would find I was dialated enough to be sent to the hospital. The night drug on...

"Normal"

Dr. Deutsch just called. No mass, no tumor; still the old cyst, but nothing new. What was it that they were questioning then? He said ultrasounds can be tricky (how many people have been told they're having a boy only to give birth to a girl or vice-versa?). Maybe what was seen was a loop of bowel or something. We will still wait to hear Dr. Superina's opinion before finally putting this to rest, but we are breathing very easy right now.

THANK YOU FOR THE PRAYERS!!!!!

Test is over; we are home; now we WAIT

12:44 p.m.
Shelby did fantastic. I'm so proud of her. We're home, she's eaten some lunch & looks really tired. I hope she naps this afternoon. Dr. Deutsch said he'll call today. I said "Are you sure it will be today?" Yes. So we wait...

Why sleep when you can...

worry?!?! I mean, why lay in a warm, cozy bed instead of staring at the internet so long your eyes are starting to cross?!?!?

Shelby's allergy appointment went well this afternoon. I asked to speak with the NP privately and explained to her the recent development. Since Shelby's symptoms (daily tummy pain, diarrhea & excessive drainage) have all disappeared with the removal of dairy from her diet, she sees no need to pursue the other foods right now. Phew! She gave us some different supplement samples to try, too. Shelby seemed excited about them because she is not thrilled about the current one.

While we were at the clinic we stopped by the hospital to pick up the oral CT contrast solution that she has to drink in the morning. I really don't think she'll mind that. Really. Between 6 and 8 a.m. she has to drink that at regular intervals and then we have to be at the hospital at 8:30 for her 10 a.m. test. I told her about her test while we were eating supper at Subway tonight. She started to cry and in a 7-year-old way cursed at her rotten liver. No she didn't really curse, but she did mumble enough for me to hear "rotten liver." I just told her that they needed better pictures of her insides and because the test took a while, its best that she napped through it. She was not as happy as I thought she'd be about the IV going in after she was put to sleep. She said "But, I'm good at getting IV's!" She did quickly remember that the gift shop at the hospital has Webkinz and "oh, if I do good can I have one please?" Sweety-pea, that's already in the works. Grammie is all over that one! Mom & I met at Target this afternoon for a little lets-help-the-stressed-out-Mommy-forget-about-things-for-a-while shopping. I bought Shelby an orange purse, orange chapstick, an orange notebook, an orange pen, orange tic-tacs, orange trident...do you see a theme here? Yes, orange is HER color. Most of the things I bought came in 2 or 3 packs and had pink so Riley will get those. Tomorrow night Shelby will stay at my Mom's for her sleepover that my Mom "owes" her. Oh yes, my girls keep track and Riley always gets ahead when Shelby is in the hospital.

Scott will be at class while Shelby is having her test done. He is always there for everything up until his CNA classes started. I know its killing him to not be with his little girl, but she understands. She is so proud to tell everyone she meets that HER Daddy is going to college to be a nurse.

I don't know when we'll get the results, but I'm sure I'll be on-line tomorrow once they take her back for her test. I'll update then.

Pray, please, pray...

CT scan scheduled

Its all set up for Shelby to have her CT scan tomorrow at 10 a.m. It will be done at Rockford Memorial with sedation. No way will she cooperate to lay still for 30-45 minutes. She has come a long way in cooperating during medical procedures, but she will not lay there that long without being put out. She probably won't care too much; I think she'd rather sleep through it. We haven't told her or Riley yet that she is having this test done. I plan on telling Shelby after her allergist's appointment later this afternoon. I thought her and I would grab a bite to eat, just the 2 of us. We'll see what the allergist says as far as adding the egg, wheat and soy to her list of no-no's.

Also, I had to take her for labs this morning because she has some big-time bruising and her gums have been bleeding. Her culture from Monday grew nothing. So who knows what is causing those boils on her nose.

Please send many prayers my Shelby's way. Thank you.

Oh shit.

Shelby's new "mass" discovered in her last ultrasound IS something the surgeon is worried about. Something about the make-up of the mass is leading him to want to rule out a tumor. If it is a tumor, then he needs to know if it is benign or malignant. Please pray. In the morning I will hear from central scheduling and her CT scan is being set up "urgently." She will be sedated and have oral and IV contrast. Please pray. I'm scared to death. Please pray...

Stuff

I'm in a real catchy-title rut these days. Sorry. Today sucked. I have been getting headaches ever since I gave myself a concussion. Today's was definitely a migraine. That's A MIGRAINE!!! I wanted to make sure I put that pain emphasis in my writing. I was in tears it hurt so bad - how wimpy is that?!? The neurologist gave me medication, but I read that it can interact with another medication I'm on. Forget trying tylenol or advil. He did suggest 4 aleve, but I just wanted to sleep it away. Finally I was able to fall asleep for about 3 hours and woke up to a smaller "regular" headache that did not go away until about 9:30 this evening. Also, my ear ringing has been in full-force since the migraine hit so sleep is not something I'm contemplating right now. I have music playing to drown out the ringing. Fun.

The ENT that Shelby saw here in Rockford last week decided he did not feel comfortable doing her T & A so now she needs to see an ENT at Children's and see what he/she thinks. The ENT in Rockford asked if she stopped breathing in the night and then made the sound that we would hear when she caught her breath again. We have heard her do it before, but I've already heard her (she's in her bedroom and I'm in the living room with music playing) do it 3 times tonight. I think she has some sleep apnea going on there. Tomorrow I should be able to schedule the appointment and maybe we'll get lucky and be able to do it when we're there on the 10th.

Shelby saw the Pediatrician Monday after school for these boils that keep coming and going on her nose. They've been re-occuring for a year now. He said its bacterial and put her on an oral antibiotic, a topical antibiotic cream and took a culture of it. Also, she is getting several canker sores and some really dry skin around her mouth. Her face is having a rough time :-o

Just an update

So...let's see. Wednesday's appointment with the ortho doc went well. Her spondylolisthesis is about the same; maybe a tad more, but nothing alarming at this point. She is to see him again in 9-12 months for repeat x-rays. We (Me, the 3 girls, our babysitter, Carolyn, and her sister, Tara) ventured over to Pocket Puppies. This is a ultra-cool pet shop that sells little, teeny tiny dogs that fit in a purse. They only get like 4 pounds. Unreal. And expensive, but a HUGE treat for Shelby to go visit. Avery thought the bigger dogs (the people working brought their pets) were hilarious. No fear there.

Tara whipped up a hat for Shelby's Webkinz while we waited in clinic.

The girls keeping busy.

Avery hanging out on the exam table coloring.

Riley was kneeling down petting this dog so Avery just plopped on her lap! Too funny! Thank goodness her big sisters don't mind her doing that at all.

Shelby next to her favorite dog for the day.

"Avery, watcha doin'?"

Then we galavanted off to Ikea for some shopping. That went well and so we headed over to The Container Store. Carolyn & Tara were very happy shoppers! Finally we arrived back in Rockford safe, but exhausted!

Eating 3 meals on the road with Shelby's food allergies is tough. No other way to put it. A lot of frustration and anger came from her because she just can't have everything. A lot of foods she wants are off-limits. She wanted noodles for supper so I remember a small Italian restaurant in Belvidere. When the food came (with garlic bread on her plate that she could not have) things spiraled downward FAST. She laid her head in my lap and cried. I feel so bad for her...soon we will be visiting Dr. Jill in Chicago to talk about these feelings. Sigh.

Thursday Shelby saw the ENT here in Rockford. He recommends that she get her tonsils and adenoids removed. They are both moderately enlarged, but that, coupled with the fact that she snores and her nostrils are very dry and scabby is enough to indicate the surgery. We DO monitor our humidity levels in the house. It is not that. It is from the adenoids. As long as Chicago is o.k. with the T & A, we'll proceed with that. Hopefully it will benefit Shelby as much as Riley's helped her.

After Daddy was done with his CNA clinicals we headed home to pack up to spend the day at Coco Keys. I still hate that place. And that's the nicest thing I can say about it. The girls had fun until the massive amount of people came in and Shelby got knocked down. Oh yes, they will be getting a nasty e-mail or letter from us!

So that's where things are at. I think the girls will be surprised to see the snow (if we get it) in the morning. Monday, its back to school!

Comment How-to

I realized that many of my readers may not know how to post comments on here. I thought I'd give a brief tutorial. See under this posted where is says "posted by Jenn," then it says 0 (or whatever # of) comments?" Just click on that. Then comment away. Good luck!

The Birthday Pictures

Shelby and her BFF, Kate

Avery LOVED the balloons!

More awesome decorations

More fun with the balloons

The cake, just as Shelby wanted. There are actually 8 candles, but Shelby only turned 7. She said the extra candle was for "good luck."

Must be an important secret.

Carolyn and Shelby being goofy!

The girls settling down for the night.

My Shelby is 7!

Well, Shelby turned 7 yesterday. Friday night she had her BFF Kate over. We ate supper with my parents at Happy Joe's then came back to our *super-awesomely decorated house for cake and ice cream. Kate stayed the night as being 7 is the requirement in our house for a friend sleep over. When High School Musical 3 ended at 11:30 p.m. they promptly fell asleep. Shelby had exclaimed earlier in the evening that this was the "best birthday ever!"

Then came Saturday, her actual birthday. She was upset that all the festivities did not happen on her actual birthday day. Now I want to stop here and say that many of you may be thinking "she sounds like a spoiled brat." BUT, this is Shelby. The child who has been through so much recently. We do our best to treat her just like her sisters (she has spent time in time-out in the hospital). BUT this month has been hell for her. She's a 1st grader and just wants to be like all the other 1st graders. I don't think that's too much for her to want. O.k., back to my story. We met my parent's at Burger King (they have some breakfast foods that Shelby can have with her dairy allergy) for breakfast so that Grammie could give Shelby one of her presents she forgot to bring the night before - a Webkinz (see picture above). After that, the realization that no more birthday festivities were going to happen set in...and so did a sort-of depression. The day finally ended around 10 p.m. with her sobbing hysterically. I know she was tired from the sleep over, but she's had late nights before and not been like she was last night. Sigh. I feel so bad for her. She did not want to fall asleep because "then she would have to wait a long, long time for her birthday to come again." She is still in a funk this morning. What's a Mommy to do? My heart breaks for all her heart ache.

I will post birthday pictures later. I just don't have time now. Us girls are going to leave the house today so Daddy can study for his big Anatomy and Physiology test tomorrow. Later...

*I thought it would be really cool to have someone come and decorate the house while we were at Happy Joe's. Who else fit the bill as perfectly as Carolyn, our babysitter, and her parents?!? It was so awesome what they did and Shelby (and all of us) were thrilled. Thank you Stuart, Monica and Carolyn for the amazing gift you gave our Shelby.

Chicago's news

Well...everything looked pretty good. I know, I know, hard to believe after the past 2 weeks she's had, but its true. They didn't even do labs on her! :o Her abdominal ultrasound revealed a new "mass" right below the current cyst. The current cyst is still the same size - which is smaller than it was originally. As for the new "mass," a CT may be ordered to get a closer look, but they say these "cysts" really do happen frequently, especially with ultrasound technology continually improving. These are usually things that they see on the actual liver at the time of transplant, but now can see them through ultrasound. We're not too worried about this new discovery. We'll just sit back and see what the surgeon decides if and/or what he wants to do with this new information. Her spleen has grown another 2 cm in 4 months. It now measures 17 cm! Remember, for you non-medical people reading this, doctors shouldn't be able to feel your spleen. Yup, Shelby's is huge which leads to her portal hypertension. Her complication with PH is her low white blood cell count as a result of splenomegaly & pancytopenia. Dr. Alonso said that bacteria/viruses that live on our bodies were more of a threat to Shelby than her being out in public. Interesting. It was decided upon today that Dr. Alonso will consult with Hematology and find out more about Shelby receiving GCSF injections. This may just be a plan we keep in our back pocket in case she gets hospitalized again with a bacterial infection or virus, or this may be a treatment we start now. Those would be administered at home by us }:-( YIKES!!! Once again, we'll just wait to hear from Chicago on that. If all goes well, we'll see her Hepatologist again in 4 months. In the meantime, we'll have a check-up with Dr. Deutsch (local GI), see her Orthopedic doctor in Chicago (next week to check on her spondylolisthesis), visit her Pediatrician for her 7-year-old (this Saturday is her birthday) check-up and her allergist to follow-up on all these stinkin' food allergies. Speaking of the food allergies, we did get to speak with the nutritionist today about them. We expressed our frustration in wanting to feed Shelby more than potato chips and our concern of a supplement (think Pediasure) to give her on the days where she just won't eat much. She did let us know that feeding her was different than feeding a "picky" eater. Shelby has medical reasons why she cannot have certain foods; of course, so many of them seem to be foods she loves, but it creates havoc on the whole eating situation. Sometimes she just seems afraid of food, especially new foods. The nutritionist also recommended a book by Ellyn Satter that would be helpful in dealing with Shelby's eating.

O.k., I think that sums it up for today. Time to cuddle with my hubby (or go goof off on Facebook!) It was a lllooonnngg day. Please pray for Shelby to stay healthy!

(P.S. I like to keep people informed about Shelby's health via this blog, but am not sure if the work I put into it is worth it. Do I have any readers out there? Please leave a comment if you are a regular reader so I can decide on whether to keep this up and running.)

Chicago tomorrow

Well...so far, so good (shhh, I don't want Shelby's body to hear that!). A low-grade temp Sunday night gave me a bit of a scare, but it magically disappeared by morning. Today she ate and played good. She is having some pretty big worries, or "bad thoughts," as she calls them. She just came off a rough 9 days, though; I think those "bad thoughts" are normal and to be expected. I can take many pictures of her smiling and happy, but there are many moments of upset and tears.

Scott started his 7-weeks of CNA classes today. When he's done around Noon tomorrow, we'll zoom off to Chicago for a 2:30 p.m. abdominal ultrasound to check on the pesky cyst(s) and then we have 3:30 clinic. It will be a lllloooonnnnggg day. I will update throughout the afternoon. Prayers please. We need to come up with a plan to deal with Shelby's low white blood cell count. Thank you.

Back for labs

5:50 p.m.
Phew! Just heard. All numbers stable or very slightly improved. Prayers, please, for a CALM weekend.

5:06 p.m.
Around Noon I got home from some appointments this morning. I looked at Shelby's eyes and was surprised that they looked even more yellow; Scott agreed. We were told that her jaundice was most likely caused from the IV antibiotic she was given. If that was the case, then why would she still be yellow (or even more yellow)? Dr. Deutsch was called and labs were ordered stat. Now we wait to hear on those results.

Some of you have asked "Why don't they just transplant her?" While she is experiencing more complications lately, transplant is not something to enter into lightly. Transplant would cure her Biliary Atresia, but she would be open to all the complications that can and probably to some extent will, come with having an organ transplant. Our little friends Annika and Natalie have experienced more than their share of complications. Even those who have a pretty smooth post-transplant road will always be immunosuppressed. Very frequent monitoring of blood levels and immunosuppressant medication must be done. Transplant is very risky surgery for anyone. So...until she's really sick, her doctors will not pursue it with her. As of today (if she were listed) her PELD would be 0. Zero. You don't get an organ at 0; its not unheard of, but not very likely at all. I hope that answers the question for those of you who have asked or wondered. :-)

Home!

She got released right before lunch, but I had to rush off to work so I couldn't post then. Her WBC went up to 1.6 bringing her ANC right above 500. She'll be staying home and going no where between now and clinic since she's neutropenic again. So many questions will be asked in clinic Tuesday. PLEASE pray for no fever AT ALL between now and then so we don't have to go back to the ER.

Still inpatient

The hospitalist was ready to cut Shelby loose today, but Scott and I just were not comfortable with it. Her WBC is at 1.0 (that's very low, folks) making her ANC 430 (low, again). We know that her body can do this, but we just want to see those numbers creeping back in the right direction before she heads home. If that doesn't look better in the morning, I'm not quite sure what the game plan is...we'll have to see. I do know that when we are in Chicago this Tuesday there will be a lot of "new" game plan talk. This kid has been getting sick way too easily this past year.

We were hopeful that they could use her (3rd) IV for labs in the morning, but we lost that one, too, due to the irritation from the Nafcillin. Rats! She'll have to have a regular blood draw. I think we counted 6 pokes in the past 8 days for IV's and only 3 of them worked.

Please, please pray for better numbers in the morning and nothing new to develop. THANK YOU!

Tuesday update

Technically its Wednesday, but since I have not gone to bed yet I'm still considering it Tuesday. Things have gotten better around here. There was concern about her tummy being very distended, but it seems to be back to "normal" now. Also, she is on her 3rd IV! It took 3 pokes tonight to get it in - what a bummer. Those once wonderful veins are getting tired of all this and not cooperating. She is still having loose stools, but NOTHING like Sunday. She is jaundice and I'm very curious to see what tomorrow mornings labs look like. The game plan as of right now is to discharge her after her last IV antibiotic infusion tomorrow afternoon, but it really depends on how those labs look. We shall see...

Icky day

12:10 a.m. (Monday)
A new IV had to be placed b/c there was redness coming from her IV site. She was very scared (for some reason she really prefers for them to be put in in the ER), but super brave. It took 2 pokes, but its in. Since that had to be done, labs were just drawn then, too. I should have those results in a few hours. It was decided to not do any more testing for the diarrhea as of tonight. She's still awake, as I. I did plan on being at home tonight - plans changed...so I had Scott bring up my work to the hospital. I have NOT gotten to even look at that yet - plans changed...I'll just roll w/it. I am beat. Goodnight (I hope!)

7:30 p.m.
The C-diff test was negative. Now what? I'm waiting to hear what the game plan is now. I also requested labs in the morning b/c this mama sees some yellow in those eyes.

Shelby just handed me a picture she drew of her as a princess and crying. The word balloon says "My tummy hurts!" She's breaking my heart...

We did have a nice supper visit from Daddy, Riley & Avery. Avery was generous w/hugs for me :-) and seems to be over whatever she had. Riley even let me give her extra long hugs, but was not happy that I am now staying the night w/Shelby instead of coming home. I told her to keep my side of the bed warm. This is so tough on her.

Please say some prayers for our friend, Jay. Scott has known him since high school and he's a really great friend. He called this afternoon to let Scott know that his girlfriend, Kathleen, passed away suddenly last night. Something about a blood clot and heart attack. She died even before the paramedics could get there. This is such a shock. We just got together with them for supper at Water Tower Place after Christmas when we took the girls to The American Girl Store. So tragic. Less than a year ago she moved from New York and he from Minneapolis so they could live together in Chicago. They had a great apartment and a dog named Charlie. Unreal. Hug all your loved ones extra tight tonight.

5:30 p.m.
Today started out w/Shelby being very quiet. She wasn't interested in breakfast and said her tummy hurt. Her abdomen is very distended; as distended as it was after her colonoscopy in November. A few large BM's have been followed by about 7-8 episodes of diarrhea. I've requested that she be tested for C-diff and the specimen is on its way to the lab. She is having abdominal cramping and is just NOT happy at all to be here in the hospital. Poor kid. She did perk up to Skype w/Grammie & Papa, but that was short-lived. I'll let you know if we hear on results.

Thank You!!!

Thank you thank you thank you Uncle Freddie and Auntie Lu!!!!!! Fffffffoooooor the awesomeness of the awesomeness of the FFFFFFFlowers & Balloon!!!!!IV picture for Uncle Freddie

We are so lucky

See that little white spot on her lower lip? I believe that was the welcome mat for this Strep bacteria to move on in and take over. Having such a low wbc makes it easy for those things to happen.

I do believe that this week; a lot of other times, not so much. This week, yes. Lucky that Shelby received treatment so quickly. Have you googled Strep A bacteria in the blood? Don't. Scary, scary stuff. Shelby's was caught very early. I truly believe Scott & I talking Tuesday night after she was in bed is what helped so much. We discussed how it would be such a weird coincidence to have pink eye & impetigo. Then we started talking about how it was probably the same thing causing it. Then she wakes up with the blisters looking even worse. We paged our beloved Dr. Deutsch who advised us to get it checked out NOW, even though it was 10:30 p.m. instead of waiting until the morning. While that trip to the ER just ended up sending us home, I still believe it was helpful in putting the pieces together. Lucky.

Seeing her have the chills, yet feel like fire was scary. The moaning & mumbling she was doing - she was headed into sepsis. Lucky. She had already had 1 round of IV antibiotics. Lucky. The night nurse, Amy, was more than willing to keep coming in & checking her temp b/c we kept asking. Lucky.

I know 2 families who have lost children to Strep A. They were blood infections, just like Shelby's. It can have such a rapid onset that it can kill a person before the doctors even know what it is. Look at this picture. It was taken late-afternoon Sunday. How can a person go from doing so well to being so sick so fast? So frightening!

Today, she got "sprung" from her room. It was determined that she had been on antibiotics long enough that her now healing blisters were not contagious anymore. My Mom spent a lot of time w/Shelby in the fabulous playroom today. This evening, Avery & I stopped up for a quick visit & both girls found ride-on toys to play w/in the halls. Shelby found a trike big enough for her and Avery had a little foot-powered toy. They had so much fun. Shelby IS feeling better. The IV antibiotics are rough on her little gut, but she's dealing w/it well. Remember, though, she has only completed Day 2 of the IV antibiotics as of this evening. Five more days to go.

Please, visit or call if you can. I'm sure she would love balloons, flowers, or just to see familiar faces. She does have dairy & egg food allergies so bringing in a food treat is tough. She asks a lot if she can go to the hospital. She likes the playroom, ordering your own food, and, I think its a "home away from home" for her, BUT the reality of having to stay so long is not sitting well w/her. There have been tears. She just wants to go back to school and be normal.

Friday Fun ;-)

So...all seems to be the same here. No fever yesterday! Yes! So far the most recent culture is negative so that means her 7 days of antibiotics can be started from the time she was put on them. I'm not quite sure how it works out exactly, but she has to have 2 negative cultures in a row. Despite the negative cultures she still needs 7 days of IV antibiotics; she just might need more if a positive culture comes up. Make sense? I have hospital brain so I'm not sure if I understand it that well, let alone explained it right.

Daddy reported that little Avery was up in the night throwing up. He says she doesn't appear to be feeling sick. Since this is the 3rd time in about a month that she has done this, I've scheduled her to see her Pediatrician on Monday. We're starting to think its an issue involving her GERD (reflux).

My Mom is on her way up to relieve me a bit and spend some one-on-one time w/Shelby. Riley is going to a friend's house for a sleepover tonight. I think we've got it all figured out ;>}

They found out what's causing all this!!!

1:40 p.m.
New cultures have been drawn to confirm the findings b/c if it is correct, then Shelby is looking at at least 7 days inpatient on IV antibiotics. No fever as of yet today, but she's not hungry and just not herself. Who can blame her?!?!

We are looking at a lllooonnnggg stay, so anyone wanting to visit can. She is contagious if you touch her open scabs on her face, but no one is coming over to do that ;~) so it is o.k. to visit her. You can't catch her bacteria by sneezes, coughs, or anything like that. I would suggest you call our room (815.971.8813) or my cell phone first to see how she is feeling, or if she's napping, etc. And remember, everyone doesn't need to rush to visit her today or tomorrow. We'll most likely be here at least a week. There's plenty of time. That's all for now. I hope I have boring, boring news to report later. No more crazy fevers!

9:13 a.m.
Her blood culture actually grew something!!! She is positive for Strep, a gram positive bacteria. The nurses told me this, so I haven't actually spoken w/the doctor yet. I'm just amazed a culture actually grew something - it NEVER does. I'm sure her IV antibiotics will be changed to be more specific to this bacteria and it will be treated aggressively.

Her fever broke in the night, but it was scary. She was hallucinating and it finally took doubling up the tylenol and motrin to make it lower. She woke up drench this morning. I hope that nasty fever does not rear its ugly head again.

It was nice to be home for 5 1/2 hours

10:00 p.m.
The tylenol is not helping. The last temp was 104.6. Something has got to start bringing this fever down! We have cold wash cloths on her now. She is so thirsty, too. This is scary.

9:42 p.m.
Mom, you won't believe this, but that bouncy kid you were Skyping a little while ago has now spiked a temp up to 104.5. She is really uncomfortable, shivering & her heart is racing. She has me worried. She has tylenol on board now; let's just pray that it works SOON. She sleeps for about 10 minutes, but moans & tosses & turns then wakes up. She is miserable. What is causing this?!?!?!? She is on IV Nafcillin for her blisters & eye.

2:10 p.m.
She's being admitted. Labs came back "strange" again. So, for her that means that her white blood cell count is high (normal for the rest of us). There's no one specific thing that's out-of-whack; just the whole situation is weird. Her fever is still hanging out in the high 103 range. She's attempting to nap now while we wait to be moved upstairs. I should, too. I think I'm beyond exhausted now and sleep will be hard to come by :-(

12:40 p.m.
Flu swab negative, IV in, labs drawn, chest x-ray taken, swab for shingles taken, temp still 103. We wait for results. This ER is BUSY BUSY today. Tons of ambulances have come in while we've been here. It will be a long day. It was even before it started. I did manage to get a smile from her, though.Oh no! She grew elf ears! :~)


9:40 a.m.
Back in the ER. She woke around 7:30 burning up w/a temp of 104.6. She is miserable and looks miserable. That's all I know for now. Pray please.

Guess where we are?

Mom, don't freak that I didn't call you. If she's admitted I'll give you a call.

3:30 a.m.
Asleep. In our own bed. Impetigo is the diagnosis as of now. She is being treated for shingles with Acyclovir, though, just in case b/c early treatment helps lessen the pain & severity of the blisters. She has a topical ointment, Bactroban, for the blisters, too. She is to continue w/her pink eye drops. Tomorrow we follow-up w/her Pediatrician & an Opthomologist. Typically, you cannot get shingles unless you've had chickenpox. She has NOT had chickenpox. I asked the doctor if it was unheard of; he said, "No, but not common at all." I said "That's Shelby." Not one to go by the book. He said her cluster of blisters, their location & her eye involvement all leans towards shingles and advised me that if it is that then things will get much worse at least pain-wise. On the little smiley-scale (whatever its called) she ranks things at about a 5 right now. Poor thing. She needs to catch a break. She just wants to go back to school.

2:05 a.m.
The doctor first said impetigo, but then wanted to test her for shingles. He's leaning more toward shingles right now b/c her blisters keep filling then bursting. It's late, so when we get our discharge papers (I hope) I think its been mentioned that she'll go home on antibiotic ointment & an antiviral oral medication. The MRSA swab was done, but that takes a few days for those results. You can see one of the blisters in this picture (sorry for the poor quality of the picture, but I'm taking it w/my computer camera), but the shadows on her face cover the other ones. There is one in her nostril that almost completely blocks the opening. She is NOT a happy camper.


12:30 a.m.
So...the eye "thing" is pink eye. She woke up this morning w/her eye not looking horrible, but, by no means better. It progressively got worse as the day went on. She went to the Pediatrician's & was prescribed antibiotic drops. She had a red area under her nose then & the Pediatrician thought it was from her blowing her nose. I said she wasn't. We just left it at that. The day went on and by the time I got home from work the area under her nose had formed about 4 blisters, 2 of which already scabbed over. She went to bed & we talked about how strange it was that she could have pink eye & something like impetigo. Then I googled. MRSA came up too many times. Then she woke up around 10:30 saying one of the scabs was bleeding. I called her GI (thank goodness he was on-call) & he suggested tonight she get swabbed for MRSA. I'm really hoping we walk out of here in a few hours having just taken the precaution of getting it checked, but being reassured that its nothing. We'll see...more later when I have info.

"Hey, I'm not spending my birthday this year in the hospital w/Shelby!!!"

That's a GREAT birthday present, don't you think?!?! Here is my birthday celebration, held at my parent's house, yesterday, in pictures.

Getting ready to make the pizza crust.

Cake decorating. Avery was MAD that she couldn't eat it right then.

Making my pizza. Yum, yum!

No sense in trying to hide my age!

Lighting my cool squiggly candles. As you can see, Avery is all set to get messy eating cake.

Thank God there's not 33 candles on there!

Telling everyone to be quiet so I could think of my wish.

Parties can really poop little girls out.

By the way, Shelby woke with a temp today and has something going on with her eye. We're keeping an eye on her...

Shelby, sick? And the update...

Update 2/27 10:45 p.m.: Labs are a bit better today. Her counts are moving in the right direction, with the exception of her AST, ALT and Alk Phos. Those are all slighter higher. ??? I don't know; Dr. Deutsch's office didn't call today so they must not have been too impressed with her labs. She's feeling fine. Let's keep it that way.

Update 2/27, 10 a.m.: Dr. Deutsch DID agree that a lot of her labs were "off" and most likely a lab error, but did not want to commit to an admit w/her liver numbers looking pretty stable. Once he admits her its pretty much at least 48 hours on IV antibiotics while waiting on blood culture results. She's looks fantastic, but she had labs this morning just to make sure they're moving back in the right direction. She's at school (yea!) and I'll update again after we get lab results this afternoon.

We've all had some form of the stomach flu in the past week. Avery was throwing up and, we'll, the rest of us, you can fill in the blank. Everyone except Shelby had caught it....that is, until Wednesday. She woke up saying her tummy hurt and just sat at breakfast. When I felt her forehead I knew there was trouble. I just watched her for a while, then her fever just kept going up. It was just under 103 when I called the Pediatrician and asked if he just wanted labs run (Shelby has standing orders) or the complete work-up at the ER. He voted for the latter. Shelby and I spend about 4-5 hours in the ER Wednesday and it was determined that her labs were stable so she was sent home with orders for the labs to be repeated the next day. This did not sit well with me. Several of her labs were "off." They were actually in the normal range, but a far cry from her "norm." I know that sounds confusing, but there was such a discrepancy that I cannot believe that her doctor did not want to investigate further.

She is feeling better. The fever broke Wednesday evening and her tummy pain disappeared w/no vomiting or diarrhea; in fact, she was hungry all day Wednesday! Yesterday's labs looked horrible (but much more like her "normal" when she is ill) so her GI wants to see her today. Our appointment is in a few hours, so I'll update later today. She is neutropenic (again) so I don't know when we'll be able to send her back to germ-land, a.k.a. school. Sigh...

Ironing & "crack"

I found this on clearance at Wal-Mart in an effort to keep Avery out of our ironing board (see in background). Scott would do a bunch of ironing and she would try to crawl through the legs of the ironing board. NOT very helpful (or safe)! She got up the other morning, paci still in, (Packer) blankie in hand and started "ironing" her new little Mexican dress from Grandma Nea & Grandpa DD. Cute, huh?!?! See Riley in the background, too. That's how you can find her most days. She DEVOURS books. By the way, check this out - Riley's performance at the Variety Show. Isn't she awesome?!!!!!!!

Crack...yes, Scott and I joke if we really like something (like my cup of coffee in the a.m., or my Diet Coke) that its "crack," or in other words, very addicting. My new "crack" is crocheting. Thanks Riley and Mom and Carolyn. I'll never be the same. ;~)

Check out this great ministry and please, please keep all the sick kiddies in the world in your prayers. Hold them close and lift them up often.

Cute stuff!

HAPPY VALENTINE'S DAY!!!

Fourteen, I mean 9-year-old Riley, all ready for her school's variety show. She rocked the house with two solos. If I ever get the correct cord, I'll download the video.

Our toothless wonder. This is just a precious face - I love it! Losing her tooth was no easy task for her as she hates losing teeth. Period. Plain and simple. It came out while she was brushing her teeth Thursday morning and there was MUCH blood involved. I've never seen a kid bleed so much when they lose a tooth. (Liver parents out there, be reassured that her clotting time IS normal.) Once we cleaned her and the bathroom up she was very relieved that it was all done and over with. Me too. :) Also, amazingly enough, she is even more energetic since we've completely removed dairy from her diet. Could it have been that she was not feeling well from the dairy, but compensating quite good? Me thinks so.

What can I say?!?!? She loved her Daddy's homemade spaghetti sauce and ate 3 platefuls of it. This is her saying "Cheese." What a kid! Straight to the bathtub she went after this meal. By the way, she does attempt to use utensils. The fork just happens to be in her other hand!

ENJOY!!!

Osteoporosis on its way out the door!

On Wednesday Shelby received a GREAT report from the Nephrologist, Dr. Langman (a bone & mineral expert), who handles her Osteoporosis. From her most recent DEXA scan, her bone density is ABOVE average for her age!!! This is the same child who's bones were so thin 4 years ago that they could hardly see them on x-rays! Whoohoo!!!!!!!!!!!!!!!!!!!!!!!!!!!! The plan is to reduce her Fosamax from once weekly to twice a month for the next 6 months; then, the 6 months after that, no Fosamax. In one year, they'll repeat the DEXA just to make sure her bone density is holding its own. Dr. Langman has no reason to believe she'll need to go back on the Fosamax; in fact, he's very optimisic about her situation. So are we :-)