We FINALLY heard something!!!

So, it took contacting Dr. Superina's secretary to get an answer but it worked! He wants a needle biopsy done by Dr. Kim. BUT...Dr. Kim is gone next week. Dr. Superina said we can have it done by someone else. We said "No thanks. If you recommend and want Dr. Kim, then that's what we're going with." That means waiting another week, but at least there's a more definite plan. Tomorrow I am to hear from scheduling on the exact date. Phew!

Our neighborhood is still in shock from Tuesday morning's murder. So far, I can fall asleep at night, but I keep waking up in a panic. I don't think our one neighbor across the street is sleeping at all. That poor family. Their loss is so sudden and so tragic. My heart just aches for them.

Avery's allergy testing results came back showing she is NOT allergic to anything. We can try the peanut butter again in a few weeks and see how it goes. The nurse said sometimes hives can be a reaction to a virus (we've all been sick around here, but Avery has not come down with it) or stress (say, like Mommy, Daddy & Shelby disappearing off to Chicago for a few days) or who knows. Hives are very mysterious sometimes. Whatever caused it, we're glad they've settled down to just a few small ones on her face.

Riley's tooth infection is not bothering her anymore. The on-call pediatrician ordered a different antibiotic for her and Scott ran to a 24-hour pharmacy to pick it up. She's wanting to read the entire Harry Potter series over again.

Shelby...is just Shelby. Fantastic about her PICC line and as energetic as ever. Every day she doesn't want to go to school, but comes bouncing out and has had the "best day ever" each day.

Scott is rockin' his classes. He's still 1st in his A & P class and managed to get a 100% on the test he had to make up because he missed it when we were in Chicago. Despite all the stress here, he is studying hard. I'm so proud of him. I guess in his CNA classes his classmates call him the valedictorian - he, he!

That's all for today...

Not a good alarm clock

Gunshots, that is. Our neighbor across the street and to the east was murdered at 6 a.m. as he came home from work. I counted 8 shots, but the little yellow cones the police put up showed 12 or so. I know the little girl, a 1st grader, and her mother through my job in the after school program. This was the little girl's stepfather. I am just in shock. Just at a time when I really need to feel that our home is a safe haven this happens. I am so sad for the family. They seem to have a lot of support as so many people have been coming and going all day. Food has been brought in. I cannot imagine what they are going through. I fell asleep in the living room last night and so I heard the shots loud and clear. I cannot get that "pop" sound out of my head, nor the sight of him laying on the ground. I feel like I'm about ready to go over the edge.

Riley came home from school yesterday around lunch time with a stomachache. After the shooting this morning we just planned on keeping the shades pulled and the girls home so they didn't see what was going on. They don't need to question the safety of their home right now. They need to feel secure and we'll do everything in our power to keep it that way. Well, when Riley did finally wake up she had a temp of 100 and she complained her gum hurt. She said her gum hurt last night, but I looked at it with a flashlight and it looked fine. Well it didn't look fine this morning. A trip to the dentist resulted in a diagnosis of pericoronitis. She's allergic to amoxicillan so she was prescribed clindamycin. She has not mastered swallowing pills yet, but I got the capsules because we were told by the pharmacist that the liquid is just absolutely horrible. I thought, no problem, I can open the capsule into chocolate pudding and she can eat it up. Riley is flat-out refusing it; she'll swallow the pudding, but not the pill; just about throw up, etc. We feel very well-versed in giving medication to children because of our 7 years of experience of doing it with Shelby. But...this is crazy ridiculous. Our dentist is off until Thursday and there's no way this infection can go untreated until then. I've put a in to the on-call Pediatrician for some help. This is CRAZY.

We heard from Chicago saying that Dr. Superina was called into emergency surgery today. The nurse reassured us that first thing in the morning she'll be on him for an answer.

We're having a rough time here. Please send some positive, calming vibes and prayers our way. Thank you.

Sunday

Today went well. Shelby's temp stays in the high 99, low 100 range constantly. I will talk to Chicago tomorrow about it. Today we visited with my parents as they just returned home last evening from their trip to Oklahoma. The big girls had a blast playing in my parents' "bonus" room. Grammie & Papa even joined in on a game of charades for a while. Avery's hives seem to be calming down, but we're still giving her regular doses of benadryl. Daddy just hooked up Shelby for her infusion (12:37 a.m., o.k., technically Monday, but I haven't gone to sleep yet so its still Sunday to me) and I'm the one who will unhook her in an hour. As of right now Shelby is going back to school tomorrow and I am going back to work. I feel so distant from the "outside" world. Hard to believe that this time, a week ago, Shelby and I were in an ambulance on our way to Chicago. The worry is surfacing again. The pit of my stomach is churning. I've eaten so many chocolate chip cookies tonight and I still don't feel better! Please, stress-eating, work for me! ;-] O.k., deep breath...where is my crocheting?

A normal? day

9:52 p.m.
I think today was fine. I say I think because it seems so strange. Plus, the day isn't over so I don't want to say anything too final. I'm not superstitious, but I did brag pretty hard how we weren't spending my birthday this year in the hospital only to have Shelby admitted the next day for 9 days. So, I just won't even go there.

Shelby's temp is still running in the just-below-we-have-to-call-Chicago stage. She's feeling just fine, though.

Riley made a trip to the Pediatrician today. Her temp was up again and her throat was hurting. I called at 10 a.m. and they had a 10:45 opening. We made it. A strep test came back fine, so it was deemed viral. She took some tylenol this afternoon and it helped her throat, but she wouldn't take it tonight. She's not a good patient at all. She got very (hysterical) upset about the strep swab and complains A LOT the few times she has to take medication. Sometimes I just want to say "Snap out of it Riley!!! Do you have any clue what your sister goes through???" BUT, she doesn't. AND that is good. Its all relative. To Riley this stuff is a big deal; to any kid this stuff should be a big deal. Kids shouldn't be o.k. with getting IV's and medical tests and PICC lines and anesthesia and....so I take deep breaths and remember that this is normal with a bit (a lot) of stress from a tough week all coming out and hold her hand and tell her its going to be alright. Our Pediatrician was very patient, thank goodness.

While we were waiting for the strep test results, I left Riley in the exam room to rest and walked over to the lab with Avery for her RAST testing. Of course, she fought from the word "Go" but they got a good vein right away and her crying helped the tubes fill very fast with her blood. Instead of a bandaid on after I just held the gauze. She rips bandaids off as fast as you put them on. In about a week, we'll have her food allergy test results.

Please pray for Emerson. If you haven't already, you can link her blog in my side column. She is having a really rough day.

Calgon, take me away!!!

10:51 p.m.
No call from Chicago. They must still be deciding how to go about this biopsy. I am really o.k. living in the land of denial for a few more days. Seriously. Its an o.k. place for us parents of chronically ill children to let ourselves wander to for a little vacation. She has been a ball of energy today. Her PICC line has some markings that looked like bruising, but now we're not so sure. We are watching it very closely. Her temp has been in the 99-range all day.

Avery's hives have calmed down a bit with regular doses of Benadryl. We observed her tonight in a bit of a Benadryl-induced fog. Poor baby. She did take a long nap today, but was more than happy to sit in the dirt and dig when she woke up.

Riley is still having concerns and worries. We talk and hug and laugh and she moves on...until the next one comes up. I so wish I could promise her that we will be home forever. But I can't. So I won't. I will just be as truthful as is appropriate for her when she asks her questions and voices her concerns. I want to take away her hurt in the worst way.

10:18 a.m.
Avery has broken out in hives. This started yesterday and has continued to get worse. We suspect peanut butter is the culprit. Benadryl is being given and RAST testing will be done today for several food allergens. I think she's itchy because I just found her standing next to her diaper. I think she took it off because with hives they are usually worse where something rubs against your skin. And, when I chased her down to put a new diaper on, sure enough, they're really bad right in the diaper area. Sigh.
Shelby's temp today is 99.9. We only have to 100.4 before we have to call Chicago. Please, temp, DO NOT move up .5 degrees, o.k.?! Sigh again.

My stomach is in knots today. I did good yesterday not thinking about the biopsy, but now today it is on my mind. Sigh, sigh, sigh.

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...