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...