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.