Well, I was hoping to do this update yesterday....

BUT, Shelby's MRI ended up taking 2 1/2 hours! I don't know what all the confusion was exactly, but something like they needed more views to get what Dr. Superina wanted and she had to be intubated b/c she was asleep and you can't ask a sleeping person to hold their breath for certain shots, now can you?!? Anyway, when we finally got to see her about 3 p.m. (after pacing the hall right outside the room) and she was OUT. Once she finally woke up, the first thing she said in her little scratchy voice was "I'm hungry." That's our girl!! Her throat is very sore from being intubated :-(

We were supposed to have our appointment with the surgeon at 1 p.m., but because of everything running behind and Shelby's test taking so long, we weren't able to see him at all. Now we have to reschedule! ARGH! Very frustrating! Scott skipped classes to be there yesterday, not only because Shelby was getting anesthesia, but also so he could be there to ask questions and talk to the surgeon. Now that 's not going to happen.

Since it was rush-hour time when she was discharged, we threw her in a wheelchair and headed to her favorite restaurant in Lincoln Park, Bacino's, for some supper. She ate pretty good, but also was very tired. We got home sometime after 8 p.m. and all 5 of us crawled into bed together. That made the day all better for this Mama. :-)

MRI and meeting with surgeon

Crazy Avery at Tot Spot class this week

Our 11-year-old!!!! Riley's birthday was yesterday!

Me and my 11-year-old

1:27 p.m.
Shelby is having an MRI under general anesthesia right now. Her surgeon wanted her to have one before surgery. She was to go in at 10:30 a.m., but they did not come for her until 12:30! She was one hungry little girl. We are just waiting for them to page us that she's done. Once she can leave recovery, we'll head up to meet with the surgeon in clinic. Our appointment was supposed to be at 1 p.m., but obviously we've missed that so we'll have to wait until he can squeeze us in. It will be a much longer day than expected. At least Scott made arrangements to miss class today so he is with us.

Sorry for lack of updates

We saw Shelby's GI here in Rockford last Monday for her tummy pain. He thinks it is her functional pain and is not surprised that it "flared up" a week after her learning that she was going to have surgery. Makes sense to me. He put her on peppermint oil for her tummy aches and suggested that we avoid things like sugar-free gum to help minimize her discomfort. She has been doing better,tummy-wise. Scott and I did notice, though, that her HE symptoms were back. A level was run and her ammonia is up a bit to 83. Her med for that has been increased a bit and we'll re-check it again in 2 weeks. Shelby is now on 33 doses of 15 meds a day!!!

We are busy working on making arrangements for Riley and Avery while we are in Chicago with Shelby during her surgery. Scott is doing awesome in nursing school and I go to see the Nephrologist next week to see if he has figured out my potassium "issues." That's all for now.

ARGH!

So...on Thursday afternoon I received a phone call from Shelby's GI's fabulous nurse. She said it could be seen on Sunday's (Immediate Care) and Wednesday's (ER) x-rays that Shelby did have a large amount of stool in her. A CT was NOT necessary! All that exposure to that extra radiation was NOT necessary! Makes me so mad! Anyway, the nurse recommended a 2-day clean-out using Miralax. So, here we are after the clean-out with reduced tummy pain, but wondering how "clean" she actually got. Her Levsin is still a larger dose than usual and x-lax chocolate (she loved it) has been added to her nighttime meds. We'll see what that brings in the a.m. We'll follow-up with her GI this week to talk about a new game plan to keep her even more "regular." Poor kid. This on top of everything else.

Shelby in ER

4:47 p.m.
We've been here a while now this afternoon and still really don't know anything yet. For about a week she's had intermittent tummy pain that now has gotten worse. She had an abdominal x-ray at Immediate Care Sunday night that showed some "backed up" stool, but we did a clean out on Monday and thought all was good. She made it about 1/2 a day at school today. We're waiting right now on lab and x-ray results. Prayers please.

6:44 p.m.
All labs have come back as "Shelby's normal" except her Alkaline Phosphatase is elevated (and it is normally NOT). A CT scan with oral and IV contrast has been ordered. Her tummy pain keeps coming and going.

10:09
CT done. Waiting for results....Doctor just came in. CT looked fine. Showed a lot of stool. They are giving her a dose of Levsin (she's already on that; they're just giving her a larger dose) and sending us home. We are to follow-up with her GI doc in the a.m.

Meeting with the surgeon

First of all, let me just say for the record I'm NO fan of my sweet Shelby having surgery. NOT. AT. ALL. But, after spending 2 hours talking to Dr. Superina I do understand why the surgery has been recommended. Finally, he explained everything going on with Shelby in a way that made sense to me; that made doing this shunt make sense. Pretty much after talking with him today, grilling him with questions and going over Shelby's last MRI with him we have decided that we are going ahead with the surgery. It will most likely happen in December. It is not urgent, but not something we should put off, either. His schedule isn't open until December. Hopefully we can schedule it between Scott's finals and Christmas.

We really grilled him on transplant vs. shunt. He spelled it out very clear. She does not have the risk of dying with the shunt surgery like during transplant. Chicago very much so believes in treating the symptoms and not rushing to transplant. Shelby's problem is with her spleen; yes, her spleen has problems because of her liver disease, BUT she has well-compensated cirrhosis so there is no reason to transplant her. Yes, a "new" liver would take care of all her existing problems BUT - and this is a HUGE BUT - it could bring many new ones with....and very well would. Immunosuppressant meds are very harmful to the body. They must be taken, but can cause many problems, including cancer. Dr. Superina was quick to list 5-7 very nasty complications from transplant surgery. One of the things we wanted to discuss was about our desire to seek a second opinion and he seemed to be alright with our wish but really made us think about what we were really looking for. He stressed that we should know what questions to ask and that we were in this situation because Shelby doesn't fit into ANY mold thus making a diagnosis from someone unfamiliar with her would be difficult at best. He pointed out that there were really only two options for most centers, transplant or no transplant and if transplants are all you do what else can they offer. I loved they way he put it " If you're a hammer, everything looks like a nail." He admitted that if we went to multiple centers we could get someone to transplant her, but that quite a few centers would say to remove the spleen. As far as we have heard this is not a good idea for a child but Dr. Superina explained that in most centers it's the adult surgeons that handle these cases even when kids are the patient. He was not trying to persuade us, but gave us very useful information and educated us.

Ultimately the decision to do the surgery is ours as Shelby's parents. After yesterday, I cannot think of a reason to NOT do this surgery. I do NOT want my Shelby going through this pain and recovery, BUT I do not want her to be so susceptible to catching "regular" illnesses that can turn deadly for her. Plain and simple.

We would appreciate prayers as we wait...

(Thank you to Scott for helping me write this entry :-)

Another "Bad" Day(s) for Me

Friday I ended up in the ER again with the same "episode" I had 22 days ago. Scott was able to drive me there so I didn't need to call an ambulance. It came on slower than the other one and didn't get as intense - as in my heart rate did not go in the 180's, but *only* the 130's - BUT the same culprit was found - low potassium. I was admitted and here I still sit. MANY tests have been run and the hypothesis as of today is that I have Salt Wasting Nephropathy. That means despite my body needing sodium I am dumping it out in my urine in large amounts (impressive amounts the Nephrologist says) and it is taking along with it potassium. So the hypokalemia (low potassium) is secondary to the hypoatremia (low sodium). Why is this happening? Who knows. The Nephrologist says he knows how to treat me, but we will probably never have an answer as to why my body is doing this - Was it a virus? Was I born this way & up until now my body has been compensating well? - who knows. I was started today on a potassium-sparing diuretic in hopes that my kidneys won't dump so much potassium. When I finally get out of here (hopefully tomorrow a.m.) I will have weekly labs for about 2 months monitoring my levels. The Nephrologist wants to see what my body does and have time to analyze it before we meet again in 10 weeks. (((Sigh))) As if we needed more on our plate!

Lots to think about

So...Scott and I have been questioning Shelby's ammonia level being elevated again due to her behavior. We requested labs be done so I took her on the 13th before school to have labs drawn. Her ammonia came back at 76 - up from 52 on August 3rd, but not as high as it was on July 20th which was 120. So, it was decided that her med would be increased by 1/2 a pill. That is going o.k. except that she is having more trips to the bathroom, but nothing horrible. The big shocker with her labs came in that her wbc fell down to 1.3 and her ANC was 471. She had been holding them up since we stopped her injections this summer. In fact, August 23rd they were 1.9 and 1045 - really good for Shelby. So this big drop had us concerned. When your ANC is below 500 you are considered severely neutropenic and at high risk for infection. We kept her home all week. Many phone calls were made to the Hepatologist who passed it over to the Hematologist. We were very unhappy with the way Hematology dealt with us. They said Shelby could go back to school without even looking at the correct labs! What a frustrating week of trying to get some answers. Scott and I are seriously considering seeking a 2nd opinion in Shelby's care because we feel like we are put on the back burner often with our concerns about Shelby. I vented quite a bit of frustration on the Hepatology nurse late Friday afternoon. It was decided that our Pediatrician would put in an order for Shelby to have labs Saturday morning just to see if things changed. They did. Her wbc went up to 1.9 and her ANC to 665. Enough to get her out of the house without a mask and back to school. Early Monday evening I got a call from Shelby's Hepatologist saying that she was recommending to the surgeon that Shelby have a Distal Splenorenal Shunt. She said we are going into our 3rd winter dealing with her numbers being bad so its time to do something. Something big. Now, we meet with the surgeon this Tuesday and he could say "No way. I don't think this is a good idea/she's not a good candidate" or he could agree with her fully. Either way, we will probably get a second opinion just to make sure this is the right path to take because this is major surgery. She would be in the hospital for a week and then home for a couple more recovering. It is so much to think about right now. We just want to do what's best for her. We would appreciate prayers that Scott and I will be able to see clearly and know the correct path to take. Thank you.

Jenn's Bad Day

Thursday is a day I never want to repeat. I had skin prick allergy testing done because my allergies are quite bad. It has been 6 years since I was tested and I was pretty sure that I had developed new ones since then. I reacted quite quickly to the test and was given Zyrtec in the doctor's office for the itching. As you can see below, my forearms were not a pretty sight.
















I left the allergist's office and ran to the bank. Still feeling fine (but itchy) I headed home from there. All of a sudden, while driving, I felt very flush and faint and my heart started pounding HARD - like it was going to jump out of my chest. Instantly I was frightened, but knew that I had to get somewhere and get some help. I didn't want to pull off on a side street, pass out and have no one find me so I made it to a Culver's. I had the presence of mind to grab my wallet (in case I passed out I could be identified) and my phone. I locked the van and went in and asked the manager to call me an ambulance. I explained that I just had allergy testing done and was driving home and all of a sudden felt awful. I managed to hit the send button on my phone and have the guy at Culver's explain to my Mom what was happening. The ambulance came and took me to Rockford Memorial. My heart rate was in the 180's and I remember them saying that my blood pressure was 180/100-something. Not good. In the ER I was given a bolus of fluid and Benadry, a steriod and Ativan in my IV. I was hooked up to heart monitors and s-l-o-w-l-y began to feel better. From the labs they drew it was determined that my potassium was low and that, in itself, can cause wacky things with your heart. The ER nurse came and gave me 2 potassium pills to take, but after a while the doctor came back and said that they had been watching my heart monitors and that my heart rate kept jumping up then going back down. They said I needed to stay overnight to get an IV potassium infusion and to be monitored. Lovely. By now my arms looked like this.


My night went fine. Not much sleep was had as I was scheduled to have vitals every 4 hours and then at 5 a.m. they drew labs and did an EKG. A few hours later I had an Echo and a chest x-ray. Everything looked good with my heart and my potassium level was in the normal range so I was discharged around 1:30.

Thursday I follow-up with my regular doctor. Who knows why my potassium level was so low. When I was sick a few weeks ago it was normal. My "official" diagnosis upon discharge was tachychardia brought on by hypokalemia (low potassium) and allergic reaction.

Not so much fun this week

This was supposed to be our week of waterparks and FUN. It turned out to NOT be that! I woke up Monday morning feeling rotten - headache, body aches, sore throat and exhaustion. Scott and the girls headed to Magic Waters without me with all of us hoping that a day of rest would put me on the mend. That was NOT to be. I had to call in sick to work on Tuesday and by early Wednesday morning my body pain was so bad I was praying for some relief. I think I was hoping some pain killers would magically appear before me. No such luck. I did get an early afternoon appointment with my doctor, though, who prescribed me Vicoden for my pain and a steroid pack. I also had some *mysterious* rash on my back that lasted less than 24 hours. He wasn't quite sure what to make of me, so he ran several labs including a parvovirus titer and a blood culture. He also recommended I stay away from the girls (especially Shelby) until we knew what I had. I stayed at my parent's house for about 24 hours and came home this evening. The labs that are done so far are all o.k. except my white blood cell count is low at 2.9...sound familiar?! This can be *normal* for someone fighting a virus and my body seems to like to drop the ol' wbc down when I get sick. It buys me another visit to the lab in a month for a re-check. This seems to be a recurring yearly theme for me if you remember how sick I got last fall with H. pylori. The parvo titer will not be back until early next week, but if I have it I should be past the contagious point. I'm going on 24 hours without feeling the need for Vicoden (yea!), and, obviously, by the time I am writing this post, am all screwed up on my sleep schedule from sleeping so much during the day. This thing/virus/whatever has knocked me out! Shelby and Avery did have some mild diarrhea this week and Shelby had a stuffy nose for a couple of days, but otherwise everyone else is feeling well. Just me. The lump on the couch.

Scott begins working 12-hour shifts tomorrow night so please say a prayer he makes his adjustment well. Thank you.

Update

Avery, Annika with her GOLD medal from the Transplant Games, Shelby and Riley having fun in Chicago yesterday when we were in there for the girls to meet with Dr. Jill.

Shelby's labs this week looked stable, with her wbc remaining at 2.0 (no need to re-start shots at this point) and her ammonia DROPPED from the 120's to 52!!!!!!!!! This is wonderful! She will continue on the new med for the ammonia, but only has to take it once a day. No labs for 4-6 weeks! She is having some issues with the skin on her eyelids and next to her nose that is quite annoying, but not bothering her otherwise. She is an 8-year-old little girl and wants to look GOOD! Of course, she does, but it is not "pretty" to her. Prayers please that the 2 new creams from the dermatologist clear that up.

We will (or at least hope to be) busy this week using up pool passes and other passes that are only good for this summer. Scott does not have to work until next Friday night, but will start working 12-hour shifts to work out with his nursing school schedule. That will be another adjustment for him, as if staying awake and alert for 8-hour shifts at night wasn't hard enough!

We will be busy until school starts and then a whole new type of busy, but are enjoying everyone being HEALTHY! Hope this update finds everyone doing well! Take care!

Wow!

With Scott working at Rockford Memorial, we now have new health insurance. I am getting familiar with their website, how to review our claims, etc. For the month of July ALONE, with NO hospitalizations, NO home health, just 4 days of doctors appointments in Chicago, Shelby has racked up $5886 in medical bills. WOW! WOW! WOW! Her most recent COTA account balance (as of June 30, 2010) is $53,224.55. If you link to her COTA page it shows $75,782.13. That is a bit misleading to me because it does not reflect the true balance of her account. Yes, we've used up $22,557.58 and she is not even listed for a transplant YET. In fact, all her clinic visits this past month have revealed that she is doing *relatively* well. :-O So...if anyone has an idea for a fundraiser please let us know. Its been a long time since there's been one. Scott & I are "technically" not to head up one per COTA's rules, but are always willing to do a ton of work for it. Enough of that!

Shelby's new medication for her ammonia level has had to be cut back because it was giving her horrible diarrhea. That awful side effect was the whole reason the doctor did not put her on the Lactulose. The frequency of going has finally slowed down, thank goodness, but let's pray that there is enough medication in her to be clearing out that ammonia. Monday she'll have labs so we can see where her wbc and ammonia levels are at.

This past week, we used one of the *freebies* that came with her Give Kids the World Village passport and went to Great America. Enjoy the pics!

Great America

Then, on Friday, Scott, Riley & Shelby went to see the Thunderbirds practice at the Rockford Airfest. This was a special invite-only event extended to local Make-A-Wish families.

Thunderbirds

I will update with Shelby's lab results this week!

Yesterday's clinics

Shelby, Dr. Superina (transplant surgeon; performed her Kasai procedure) and her beloved Dr. Jill

Yesterday Shelby had Cardiology and Liver clinics. Cardiology was lllooonnnggg as she needed an EKG (quick) and and Echo (lloonngg!). We had a 10:40 appointment and we finally saw the doctor around 12:30! Yup, that's clinic :-( We ran downstairs for a quick lunch and then got into Liver clinic early. Of course, we were still there for 2 hours! Her labs drawn earlier in the morning showed that her wbc has remained stable (good!), but her ammonia level is elevated (bad). We had requested that they check it because Scott and I have noticed some changes in Shelby the past month - forgetfulness, easily irritated, spaciness, confusion - not all the time, but enough to be concerning. This is called Hepatic Encephalopathy. It can be very serious, but Shelby's is mild right now. She needs to be a on med called Rifaximin, but insurance is questioning the need for it because it is very expensive ($600 for 1 month!). Her "liver" numbers are holding at just about *normal* normal and she is growing like a weed....so they are not looking at transplant right now. Its such a double-edged sword, her whole situation. She's having so many *mild* side effects, but combining them all together makes for a lot. I'm glad she is doing as well as she is, but how much is enough? Labs will be repeated the beginning of August to check on her wbc and ammonia.

Hematology Visit

Long day. There really isn't much to report other than that if Hepatology (liver drs) o.k. it, Hematology (blood drs) are recommending the shots be discontinued so we can see what her body can do on its own. If she doesn't get sick before the beginning of August, then she'll have labs to see where things are. If she gets sick, then the shots may need to be re-started, but we'll just have to see. We're just fine with that. At $300+ a shot, I'm sure insurance will be very pleased, too. Now to pray that her body can stay healthy on its own. Enjoy the pics!

House on the Rock

(Today we drove to the House on the Rock in Spring Green, WI. We had free passes to go there from Shelby's "passport" she received from staying at Give Kids The World Village on her Make A Wish trip. It was a long day. We had fun, but, once again...LONG day. I'm sure Riley and Shelby have the same amount of pics from their cameras as in this album, but I haven't downloaded those yet. Enjoy!

By the way, her wbc came back at 2.1 (I was really hoping for it to be much higher.) Her ANC was 1050, though - that's good. We'll see what Hematology says on Thursday.

Busy week!

Last week Shelby had NO bad side effects from her shot - YIPPEE!!! She attended day camp and Riley went to sleep-away camp. Friday, we picked them both up and headed to Moline to see Justin Bieber in concert. Our fabulous Wish Granter, Ann, hooked us up with tickets. The girls LOVED the concert. Avery got to spend the night with Grammie and Papa. Scott worked Saturday and Sunday night, but arranged his sleeping time so that when I got off work at 5:30 we headed over to our friend's neighborhood for a kids' bike parade and to watch the fireworks. All of us girls slept in this morning and Scott crawled right in bed when he got home at 8 and is still sleeping. We need some R&R time! Enjoy the pics! By the way, Shelby will have labs today so we'll see how good those shots are working.

Justin Bieber

Hmmm...how to do an update....

Shelby has been doing o.k., so-so, some days good, some days bad, some days fantastic, some days half-and-half. Its confusing. Her G-SCF injections make her feel rotten for 2-3 days after she gets the shot. Each week its gotten a little worse. This past week the tylenol wasn't making her feel better so we changed to motrin. I don't know if it made a difference or if the time of feeling yucky was coming to an end. Scott and I have each done an injection and home health feels were ready to be on our own. I know we are; I just don't want to be. I'm her Mom; not her nurse, but I am. And that's just the way it is.

Her allergy testing that was done while she was inpatient showed her dairy allergy to be "absent or undetectable" so we have been s-l-o-w-l-y adding dairy to her diet. She's had tummy pain complaints before we started and the complaints haven't changed. They are still the same. We are starting with such small amounts, too, that Scott and I really don't believe that the dairy is changing anything for the worse.

I don't even know who to talk to about her tummy pain. She was just fine this evening swimming in the pool then got out abruptly and said her tummy hurt so bad she thought she needed to go to the hospital. :-( She's just been acting very tired since and quiet (for Shelby).

Last night this happened, too...and the night before...and during the day before that...you get the idea. So frustrating!

OMG!!! I can't believe I forgot to write about this!

This Saturday is the American Liver Foundation's "Liver Life Walk" here in Rockford. "Team Shelby" has raised $865!!! Our goal is $1000. With all the craziness of Shelby being in the hospital, Scott starting a new job and school ending I forgot to tell you all about it and ask for donations. PLEASE donate if you can!

THANKS - Jenn, Scott, Riley, Shelby & Avery

8 years ago today...

Very jaundiced less-than-a-week old Shelby held by 2-year-old Riley

Scott and I handed over our tiny 10-week little Shelby to the surgical nurse. She was carried away to have exploratory surgery to test for Biliary Atresia. If Shelby's little body "failed" the test, then, indeed, she did have this awful disease that kept ringing in our heads. About an hour or two (my memory fails me) into the procedure we received a call on the waiting room phone. "Yes, she has Biliary Atresia. Dr. Superina is proceeding with the Kasai procedure." . . . . . . Scott and I hugged each other and cried and cried. How could this be happening to our child? We were surrounded by my parents and my brother Tony throughout that day, but it seemed so unreal.

Fast forward 8 years: YES, Shelby has had many ups and downs on this crazy roller coaster ride, but that Kasai that the skillful Dr. Superina performed is hanging in there. It works! Had it failed, she would have been transplanted as a tiny baby.

Even after the rough journey we've had recently, I am still SO thankful that she is doing as well as she is. It could be a lot worse and I know that. But, it isn't.

Have a great weekend!

Me getting to hold Shelby for the first time after her Kasai

Matthiessen Falls

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

HOME

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

So behind

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

Saturday

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

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

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

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

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

Friday

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

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

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

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

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

Please continue to pray for her.

Lost in the "hospital time-zone"

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

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

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

May 2010 RMH

Tuesday update

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

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

Seriously?

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

Colette

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

Sunday

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

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

Saturday

I've sat down 3 times trying to update this today, but it just was not happening. Very busy. Busy in a good way. Aunt Lori, Uncle Bruce, Grandma Nea, Papa DD, Daddy, Riley, Avery, Grammie & Papa all stopped in. It was very good for Shelby. No fever today and her tummy pain was a lot less, but her diarrhea is back tonight and her tummy is about 2 cm larger than last night. Not too bad of an increase, though. She is on neutropenic precautions AGAIN...its the same 'ole story over and over again. Fever and abdominal pain upon admit, then she gets neutropenic, nothing grows from the cultures and we head home. [[Sigh]] Let's hope that's how this stay goes.

Headed to the ER

6:24 p.m.
Getting admitted. Just waiting to head upstairs.

4:28 p.m.
IV in, urine & stool collection, blood cultures & labs taken, chest x-ray done...now we wait. Her tummy hurts pretty bad, but she's firing down ice chips like nobody's business. That's my girl.

12:54 p.m.
Shelby woke with a fever in the night and then diarrhea started this morning. Her fever dipped a bit, so we were just watching her closely, but now its headed back up. Chicago says get her looked at. Here we go...prayers please.

Sorry for the lack of updating...

I'm not abandoning my blog by any means, but this past week its been easier to gripe about what's going on with Shelby on Facebook. It was just easier to post one-liners about the situation out of my frustration.

But I do want to keep you loyal and faithful followers in the loop...so Friday in Chicago she had labs (like a trooper!), full PFT's, an abdominal ultrasound and an appointment with her therapist. Her labs showed only a slight (.2 of a point) change in her wbc, but her ANC did go into the 600's making it o.k. for her to go back to school yesterday. Her pulmonologist said her PFT's looked o.k., but to repeat them in 1-2 months and see him in clinic. The GI in Chicago said it was finally o.k. to give her the Elavil for her tummy pain since her PFT's looked o.k. So now she is being treated for her tummy pain, but her med can make her sleepy and can take a while to build up in her system. We shall see. Its been hard for her to go back to school after being gone for a week, but today was better than yesterday for her.

When I read the paragraph above, it looks really simple. Not complicated. But, it isn't easy. Scott and I are torn so many times on how to react and help Shelby get through her pain. Do we push the doctors more for answers? How do we explain this to Riley who is mad to come home and see her sister acting fine, when an hour before Shelby was feeling rotten? We just manage.

Stupid WBC!

Monday Shelby came home early from school with tummy pain. Different tummy pain than her "usual" in that when it was going on 8 hours of her complaining I took her to the ER to get checked out. No fever, just pain. Labs were drawn showing her already low white blood cell count to be even lower at 1.4 - YUCK! She was not admitted, but is at home on "house arrest" until she has labs that show that number to be getting better. Those are scheduled for Friday morning along with pulmonary function tests for some chest/lung pain and palpitations that she has been complaining of the last few weeks. Oh Shelby...so sweet, so complicated...prayers please.

April is...

National Donate Life Month. Unless this is the first time you've visited my blog, you well-know how important organ donation is to our family. IT WILL SAVE SHELBY'S LIFE ONE DAY. Please, be an organ donor.

Avery's birthday weekend

Avery's 3rd Birthday

Avery's 3rd Birthday Party

Day after party & misc.

Spring Break week recap

We did a bit of this and a bit of that. We took advantage of several free activities in Chicago and really made it a budget (but FUN) trip. The captions on the pics pretty much sum it up.

Spring Break 2010 Chicago trip

Today I heard from Dr. Saps, the Chicago GI, regarding Shelby's gastric emptying study. There is some delay in her stomach emptying, but since she's been pretty symptom-free (Yippee!) the past few weeks we are just going to sit tight right now. That means not starting the Elavil or anything else. Not even anything for the delayed emptying. Scott and I have talked a bit and think we will call Dr. Saps and talk to him some more about this delay, though. Some things she feels, we think could be helped by medication for that. So, we just pray right now that her health stays STABLE. We go back in to Chicago on the 19th (I think?) to see a dermatologist. Yes, 1 more specialist!

My (baby) Avery turned 3 today! I just can't believe she's 3 already! I'll post Sunday all the birthday party pics. Enjoy!

Happy Easter!

I hope you all had a blessed Easter! We did! This week Shelby has her gastric emptying study in Chicago. We're going to try to make some fun out of our trip. She finally got the approval to start the med for her tummy pain, but there's still a discrepancy on what dosage she is supposed to get. Two doctors, two different opinions - fun ~ NOT! I took her to Immediate Care today because she has a sore in her nose that has been there for about a week-and-a-half and is not healing despite putting Neosporin on it several times daily. It was cultured and she is to use Bactroban on it 3 times daily for a week and follow up with her Pediatrician next week. Let's pray nothing grows from the culture.

Easter 2010

Prayers for others please

Dear Friends and Family,

Please add these people to your prayers.

My Aunt Angie and family - her father, Angelo, passed away unexpectedly after having surgery last week.

Ayanna, our little friend from Liver Families - what an ordeal they are going through. Please flood the heavens with prayers for this little girl.

Thank you so much.

Shelby's 8th Birthday

My Shelby turned 8. Eight, Eight, 8!!! Wow! I loved it when she asked to hear "her story." We talked about how fast she came into this world - 1 push, 1 pull (the doctor had me put my hands under her armpits and pull her out) and what a little peanut she was. I then had to get out the picture album - that was way back before we were digital (ha, ha)! Her birthday weekend started out Saturday morning with a visit to the Discovery Center for their "Bubble Festival." Shelby loves to blow bubbles with soap and her hands as the bubble wand when she washes her hands. We watched a live performance by Geoffrey Akins which was amazing! We then played with lots of bubbles. She had a ton of fun Saturday afternoon/night with a friend sleeping over. The party theme was "Monkeys." They played at Monkey Joe's, made sock monkey heads, had all sorts of little monkey trinkets in their goody baskets, ate chocolate covered bananas and had, of course, monkey bread for breakfast! They wore matching monkey nightgowns, too. Yesterday, the big girls and Daddy played at a few parks while Avery napped and Mommy got some much-needed housework done. For supper, Grammie, Papa and Grandma Marian came over for Subway - Shelby's choice. It was a great weekend.

Shelby's 8th Birthday

Happy 8th Birthday my beautiful Shelby!

CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Scott received his acceptance letter into Nursing school yesterday!!!!!!!!!!! Yippee! Whohoo! He has worked so hard for this! We are so proud of him!

Watch for later in the day for Shelby birthday updates. Today she is 8!

Dr. Saps visit

This afternoon we met with Dr. Saps. He is a GI - yes Shelby already has a FANTASTIC one here in Rockford - but he specializes in motility issues and Irritable Bowel Syndrome. He does not think Shelby has either of those. What he does believe she has is functional pain. He does not believe it is from her liver disease, but believes that it is aggravated by her body not being in "balance" from her liver disease. Make sense? Does to me. Basically, her abdominal pain would probably still be there with or without liver disease, but it wouldn't be this bad. She is being put on 2 new medications. One is for the pain and one is to try to eradicate any "bad" bacteria in her gut. He's not so sure that she actually has a dairy allergy despite her RAST test results. If we can get her gut pain under control then, maybe, possibly we can re-introduce dairy into her diet. When Shelby heard this she exclaimed "You are the BEST doctor ever!" and ran and gave him a huge hug. Along with her medication for the pain will come cognitive therapy (back to our beloved Dr. Jill) and possibly hypnosis. I'll have to research that one. Dr. Saps said he didn't believe it when it first came out that hypnosis helped, but the research results are very impressive. Shelby has to have an EKG before she can start her medication and have a gastric emptying study done. Dr. Saps also agrees that Dr. Deutsch is a wonderful and smart GI and he can manage Shelby's care. We'll check in with Dr. Saps to let him know how things are going. Good visit. Good plan. Now, let's pray that it works!

Please consider supporting fellow "liver" Mom, Crystal as she runs to raise money for liver disease research. Thanks!

Some progress on the "new" med front

"The squeaky wheel gets the grease."

That is the approach I often have to take in dealing with Shelby's doctors and nurses. No, she isn't the sickest kid around, but she's my kid and she hurts, dammit! If they don't understand that it is a hard situation to deal with day-to-day, then I will *help* them understand by letting them know how much it is affecting my daughter's life. So, its been 6 days since clinic. No med has been prescribed - we haven't even been contacted about it. So yesterday we called...and this morning I called. Lo and behold, turns out Shelby has to see the GI in Chicago to get his input on what med she should be on...it was made out to sound much easier than that in clinic Tuesday. Because of our insurance, she can only be seen at the Lincoln Park location (main hospital, not suburb clinics) and they did not have an opening until JUNE. Yes, I said JUNE. Three...1, 2, 3...months away. NOT o.k. Shelby's liver nurse waved her magic wand and, voila, she has an appointment with Dr. Saps this Monday afternoon. Now that's what I'm talkin' about baby!

Tomorrow...5 days later....I'll get around to it eventually

Sorry to leave you all hanging there with the "I'll update tomorrow" line. Jeez! What kind of blogger am I?!?!? Shelby's check-up with Dr. Langman was good. Her bones look fabulous - "normal" - that's what we like! She'll have blood work done again in a year for him to make sure her levels are holding steady.

We are still waiting to hear on what med the GI's want to try her on. I think I'll be doing a "checking-on-the-progress-of-that-decision" phone call tomorrow. Dr. Mom & Dad (uh, me and Scott, that is) miscommunicated and just realized today that she has not had her Levsin (hyoscamine) since lunch time on Friday. Yikes! (That's the one she's currently on for tummy pain.) Since she still has such chronic pain I was thinking it was not working - wrong! She is supposed to have it 3 times a day and her little body was missing it tonight. We got her script filled today and got a dose in her tonight, but the pain had already set in. Poor kid had a tough time getting to sleep. Major guilt-ridden parents here. :-(

We've had a busy weekend taking a road-trip yesterday in the North Aurora and Wheaton 'burbs to pick up some loft beds for the big girls off of craigslist. We met "Aunt" Tony (Martin girls joke) for lunch and managed to shop a bit at an outlet mall. (Wish we could have seen you, "Uncle" Julie!) Last night and today were consumed by assembling the beds and the bedroom. I'm tired, but for some reason am up typing this update at 1:23 a.m.....hmmmm....better head to bed.

Tony, Me and Avery

Uncle Tony and his Nieces

Clinic news

So, Dr. Alonso agreed that gastritis can cause abdominal pain, but not the kind of gastritis caused by portal hypertension. She believes (is hoping?) that Shelby's abdominal pain is a motility issue that a new type of med will help. She is e-mailing a GI here in Chicago and Dr. Deutsch so they can work together deciding what med to put her on. We are to give it about 6 weeks. If we see no improvement after that time period, then transplant talks will start. It would have to be a living donor because she would be no where on the transplant list - not w/her type of complications. Jaundice, poor growth, bleeding - those issues would put her on the list, but not Shelby's issues. Dr. Alonso, though, feels that if we cannot get this pain under control, then Shelby's quality of life is being compromised (many, many, many weekly/daily trips to the nurse's office for tummy pain, laying in bed at home when her tummy hurts, not wanting to play when it hurts - a LOT of missed school) and, along w/her other side effects of liver disease, it is time to get her transplanted. She said Shelby's time is getting closer, no doubt, w/the severity of her portal hypertension. Dr. Alonso is very impressed w/Shelby's excellent growth & muscle tone. Some things we're starting to see in Shelby were evident early this evening as we took her to a "Family Jump Time" at Pump It Up here in Chicago. Shelby played (hard) for about 20 minutes then just looked like all her steam had been let out. She sat, was very quiet, and we needed to go out in the lobby and sit w/her for a while. We told her it was o.k. if she couldn't play any longer, but she just wanted to rest for round 2. And she did. She never needed that rest before; now she does. She also was very winded as we were walking outside later on the way to supper. These are little signs that her liver is crappy. No other word for it - it sucks. I just want my little girl to not have pain. Dr. Alonso did say that kids w/GI problems did have a lot of pain, but kids w/liver disease alone did not have pain, but very threatening complications. We'll see what this new med is and pray that it works.

We are at the Kohl's house for the night and will be going to see Dr. Langman in the morning. I'll update on that news tomorrow. Night.

Clinic tomorrow

Please keep Shelby in your prayers as she has "liver" clinic tomorrow. We have a lot to talk about with the doctors. We will be in clinic on Tuesday and then Wednesday morning we meet with Dr. Langman about her DEXA, blood and urine results to see if her osteoporosis is gone. He was not anticipating seeing any problems, so let's hope that's what he says.

(Oh, and by the way, tomorrow is my birthday and Shelby's little body seems to think that's time to get sick and hospitalized - at least that's what the past few years have been like. Please pray her little body ignores my birthday :-)

Biopsy results

Normal duodenum biopsies - NO sign of Celiac's or allergy cells present - lymphoid aggregates present - stomach biopsy showed mild gastritis likely secondary to portal gastropathy.

I just got that info from our FABULOUS nurse who is still at work at 8 p.m. We LOVE her! No input from Dr. Deutsch, just the "official" biopsy report.

From what I've read so far about this it seems as if this IS all directly from her liver disease. I have been trying to say that!!!!!! We'll see what Chicago says on Tuesday at clinic.

Test Day

10:29 a.m.
"Clean-out" day went o.k. Drinking all the clear fluids (popsicles, sprite, chicken broth) was fun; drinking the magnesium citrate was NOT. We had to page Dr. Deutsch around 9 p.m. to see if he wanted us to give her a 3rd dose as things weren't coming out that clear yet. We'll see when he comes out and talks to us how "clean" she got. She didn't want to put on that stupid mask and go to sleep, but was super-brave and laid down and just breathed the gas in like a champ. I wiped away her tears. Now we wait.....

1:56 p.m.
She did just fine and was discharged less than an hour after she came out of the procedure. We headed up to Roscoe to get Avery from having lunch with my parents, made a visit to a gift shop and now are hanging out at my parents while Shelby tries to refill her tummy. She weighed 3 lbs. less than her usual and her tummy was about 6 cm smaller than usual. She was cleaned out good!

Dr. Deutsch found redness in her esophagus, stomach and intestines which is to be expected with portal hypertension. She has 4 grade 1-2 varices in the lower part of her esophagus. Those are about the same, but I think she only had 3 last time she was scoped. He did find, though, some nodular mucosa (nodules on the inner lining of the intestine) on the lower portion of her duodenum. This possibly indicates Celiac's or H. pylori or nothing...but, he's never seen this before in her. This is something new. Could this be the answer to her pain? Wednesday we should have biopsy results.

Shelby: Friday tests

Shelby's continual tummy pains have led to tests being ordered. Today we found out that Friday morning she will have a colonoscopy and endoscopy at RMH. Tomorrow at 10 a.m. she will start her clean-out. Prayers, please, that it goes better than last time.

I just realized I really have not posted much about this "tummy pain." I've been doing little updates on Facebook. Back to the blogging for me. Bye, bye Facebook - at least for Lent, anyway. Shelby's tummy pain started in early November, was under control for a while and now back again. Since her abdominal CT back in November (her last admit) showed some thickening of her bowel walls...we'll see what that means.

I really shouldn't be laughing at this, but...

how can I not? I mean, I do have to deal with this child's 2-year-old stubbornness every day, but this is a cute one. Gotta love her determination. She said "I NOT sleep in sister's bed!" She was right. So, I threw a blanket on her and that's where she'll stay for the next few hours. Sweet dreams, Avery. I hope you wake up happy and not grumpy.

Update

I don't think Shelby had a stye; or, maybe, she did. Either way, our Ped prescribed antibiotic ointment on Saturday and we kept up with that and warm compresses every so often. It then spread down her face a bit, and looked like pimple, but was gone this morning. I took her to the dr. anyway. And, Little Miss Onry (I mean, Avery ;-) went, too, b/c she has had what has looked like little mosquito bites, but then the next day they're red and raw. They have been coming on slowly, but now that we look back a few weeks ago she had a blister-like sore on her palm and one on her finger -duh! Impetigo. So, she is on an oral and topical antibiotic. Shelby does NOT have impetigo, but what, we don't know. We are to use antibiotic ointment on her eye still, another antibiotic ointment on her pimple-like things and then a steroidal cream on her skin near her nose that is really, really dry. She also has been referred to a dermatologist. Great, another specialist to add to the list. Sorry for such a sarcastic post, but it's just been one of those days. Later.

I can't get this off my mind

Shelby has what looks like a stye in her eye. But, that's how all this started last March. The picture below is some from the day (or day before) she was admitted. I don't know if I'll sleep much tonight. I keep waiting for her to come out from her room with a fever. Prayers for some peace, please.

Prayers for a friend please

I just found out that a friend I grew up with, Michelle Kovanda Iasparro, was diagnosed this week with Stage IV colorectal cancer. It has already spread to her liver. Please, please pray for her. She will be heading up to Mayo soon to meet with doctors there. She is just 1 year younger than me. Thank you.

Happy 2010!

Last night we celebrated New Year's at the church at an event put on by the Youth group and the UMW. Board games, food & fellowship were enjoyed by all. Here's our pictures. Happy New Year! Always praying that this year is better than 2009...

New Year's Eve 2009