Wipeout!

Avery learned the hard way that you cannot sucessfully sit on a little ball on a cement driveway...poor baby. Other than the initial crying she's oblivious to how painful her little face looks. This, I'm sure, will be the first of many boo-boo's.

Chicago today

So today we headed back to Chicago for Shelby's visit with the ENT doc. Remember, what seems like ages ago, when she saw one locally, but he did not feel comfortable treating her with all her issues? Today we saw one at Children's and he wants Shelby to have a sleep study done to determine if she has sleep apnea or not. Her tonsils aren't big, so it isn't very clear-cut if they should come out or not, but she does have several symptoms that could point to sleep apnea...or not. She wets the bed, is very hyperactive, snores, breathes with her mouth open. Those are all symptoms of sleep apnea in children. Anyway, they have so many kids to test for it that it is a 3-month wait to get in!!! Its o.k., this is nothing urgent.

Also...GRRRR..I am not happy with one of our home health nurses and have let the supervisor know about it. She came and did Shelby's first at-home dressing change on her PICC line and made a huge mess, not only of Shelby, but also left behind used supplies in the chair Shelby was sitting in. Well, she came yesterday to change Shelby's dressing and forgot to put on the bio-patch (sits around where the catheter enters the skin). She put the tegaderm directly on Shelby's skin where the catheter enters Shelby. When I pointed out that she forgot that she said "Oops, well, it will be o.k." WELL IT WASN'T O.K.!!! Shelby lost her line today!!!! She woke up this morning complaining that it hurt and when we unwrapped it her skin where the catheter goes in was all red and irritated - it was NEVER like that the whole month she had it! Damn that nurse! Since we were already headed to Chicago for the ENT appointment, I made a bunch of phone calls and it worked out that Shelby's liver nurse (Cindy) met us in ENT clinic and pulled the line. She said it looked "angry" and there was no way it could stay in. Granted, the line was to get pulled either tomorrow or Friday, I'm just pissed that the nurse screwed things up. What if Shelby needed that line for a few more weeks?!?!? O.k., had to vent. Shelby's arm is in really rough shape from having tegaderm on it for a month and we need to watch the redness where the catheter was, but it will get better with time.

We took Riley & Avery in with us today and had some fun! We walked down to the lake and then over to the Lincoln Park Zoo. We are all tired, but had some GREAT and much needed family time. Enjoy the pictures and videos!

Day in Chicago May 2009

He finally realized how much Avery looks like him!

I'm being a slave driver and "making" him go through some old boxes of his stuff. Don't worry, I'm making myself go through my stuff, too. Can you say "you don't still need your first box of checks, Jenn?!" Anyway, Scott ran across this picture last night and brought it to me, AMAZED. Now he believes what we've been telling him for 2 years...Avery has been called "Little Scott," and "Scottina," because we've all seen it.
BTW, Shelby went to school today :~)))))))

Friday

Today all seemed to go well. We kept Shelby home from school. Mostly because we want a few more days before she is re-exposed to the world of germs. Her temp has been in the upper 99 - lower 100 range, but we're just keeping a close eye on it. We just had a great visit with our babysitter, Carolyn, and her boyfriend, Caleb. We all enjoyed hanging out with them this evening. "Finding Nemo" was on the Disney channel and Dory's song "Just keep swimming, swimming, swimming..." makes me think of Shelby so much. She just keeps moving along, not letting anything stop her. Even the pain from her biopsy didn't slow her down that much. What a trouper! Here is the site of her biopsy. You can faintly see her Kasai scar. We are approaching her 7-year anniversary of her Biliary Atresia diagnosis and that operation. Wow! Go, Shelby, go - just keep swimming...

Negative cultures! :-)

Sorry the picture is so grainy, but I took it with my camera phone and had to lighten it. That's Shelby right now, sleeping soundly next to me, while getting her last dose of vanco. In fact, that is her last dose of IV meds in the house. The on-call fellow called a little after 10 tonight to say that her blood cultures were negative so we don't need to do more than 48 hours of antibiotics. Yippee! Who knows what caused her fever. This is Shelby, you know. The one who does nothing by the rules...

Last night was very long. It made me appreciate even more the work the nurses do while we sleep! It was nice, though, to be in my own bed while hooking up meds so I will not complain. Heck 2 IV meds is a lot better than many of our liver friends have had it! Emerson's Mom was on a schedule that would not allow her more than a few 3 hour stretches of sleep at one point!

Today my after school program ended. I do have a few more weeks to finish up some reports and inventory, but its done. Anybody hiring???

By the way, Scott pulled of a 100% in his A & P class (that's the entire semester, not just his final) despite all the stress we've been under. Way to go babe! I'm so proud of you!!!

NO MALIGNANCY!!!!!!!!!

What a HUGE relief!!! Exclamation points do not do justice to the relief we feel. It turns out this mass is a collection of normal liver cells. Nothing malignant. Diseased, cirrhotic, bile-filled, but only liver cells, not cancer cells. The samples taken showed a lot of scarring (cirrhosis) and a lot of bile. They think that some of the passes made to take the biopsies nicked the cysts she has. Those are mostly bile-filled, thus the bile in the samples. It also possibly explains her fever better. When a person has a liver biopsy, bile free radicals are released. For some, this bile causes problems. This looks like the case with Shelby since there was so much bile in her samples. So the game plan with her PICC line has changed a bit. We are to continue IV antibiotics until tomorrow evening. She is on vancomycin and zosyn. She should be getting a dose right now, but that's the next paragraph. She will have doses again at 2 a.m., 5 a.m., 10 a.m., 1 p.m., 6 p.m. and 9 p.m. If we hear tomorrow that her blood cultures are o.k., then the 9 p.m. dose will be her last. If the culture grows something, then she'll continue on IV antibiotics. If she's done with the antibiotics, her PICC line will stay in for a week. It was originally going to get pulled on Friday, but now, because of the findings on the biopsy of so much bile and the suspicion that its causing problems they want to see how her body responds to a week of no antibiotics. So far, she's only made it 5 days off the IV antibiotics before spiking a temp. She is still having pain from the biopsy site, but mostly in her right shoulder area. She decided she had enough of the dressing and pulled it off tonight. Those little holes were not as little as I had imagined.

I was going to write about the problems we've had with our home health supplies provider, Walgreens Option Care, but now I'm too tired. It will be a long night of set alarms to get all this med in. Until tomorrow...

Wednesday - Inpatient @ CMH

4:23 p.m.
Jenn just heard from the doctor and the biopsies are a mass of diseased, but NORMAL liver cells. No malignancy!!!! Jenn, Scott & Shelby are on the road headed home. She called to have me log on to the blog to let you all know. When she lands at home I'm sure she'll blog more. But for now, THANK YOU, THANK YOU, THANK YOU !!!!
Jenn's Mom

12:24 p.m.
We are getting SPRUNG! The biopsy itself could have caused the fever, or she could have a virus, or it could be ????? She does have to continue the IV meds at home until 10 p.m. tomorrow night. We'll get a call on what her culture results are. If they grow something, then the IV meds will be continued longer; if not, she'll be done and the PICC line will get pulled on Friday by home health. Yippee! After her 1 p.m. dose of Vanco, we're outta here! Hopefully we can get home before the storms hit our area.

No biopsy results :-(. Those could take a week - sigh. They'll call us with those.

10:19 a.m.
The night was uneventful, thank goodness. No fever as of last evening when it spiked to 103. She has had quite a bit of pain on her right side, especially in her shoulder area. They did go through quite a bit of muscle for the biopsy, so that will just take time to feel better. She did not feel that her pain was enough that she needed anything for it, although she did say it was a "6" on a scale of 1-10. The attending doctor should be coming in soon and let us know the game plan and biopsy results if they have some. I sure hope the plan is to go back home. I'm sure home on IV antibiotics, but that's o.k. HOME is where we want to be...

Biopsy Day

9:02 p.m.
We're in our room on the 6th floor. Her W(hite)B(lood)C(cell count) is a whole whoppin' 1.5 (very low - hard to fight off infection) so she's in a private room. Fever is still up around 103, but she's munching on chips and watching TV. She just looks rough, though. She did have a dark BM so that's a bit concerning. They'll be checking her hemoglobin soon, along with running blood cultures on her P(eripherally)I(nserted)C(entral)C(atheter) line, checking L(iver)F(unction)T(est)'s and starting her on vancomycin and zosyn (IV antibiotics). Is this the reappearance of the (suspected) cholangitis? More updates to come...

6:38 p.m.
So...Shelby and I took a snooze for a little over an hour and she woke up with a temp of 102.5. And her hemoglobin has dropped some. Both not good. The IR doc came in to see her and said that she'll be admitted for the night. What's going on?!?!?! I'll update when I know more.

Shelby in recovery inhaling a popsicle

2:15 p.m.
We are in recovery. All went well. It was just over 2 hours that she was back there. The doc took 8 biopies! She's pretty sore. We're just trying to keep her content, thus I must hand over the computer....later.



11:00 a.m.
They gave her the white stuff in her IV and off she went. That was about 15 minutes ago. Here are some pictures of her waiting. Really she was very relaxed. She only got upset when she knew that it was time to go to sleep and that happened so fast. We were told by the IR doc to not worry if we don't see him for 2 hours. He wants to take 3-4 samples. He said that he is really stumped, like Dr. Superina is, on what this is. We were crushed to find out that we were told inaccurately that we would have results today. There might be some preliminary results...maybe. We just pray that all goes well during her procedure. Scott and I are stuffing in McDonald's...time to finish eating.

Tomorrow

Its almost here. Scott and I are wrecks. He managed to take his A&P final despite hearing really crappy news from the unemployment office this afternoon. (I'll update more on that saga later in the week.) We've shipped out Riley to Scott's parents house and Avery to my parent's house. Shelby is still playing on the computer...at 9:47 p.m. Just in the past hour she's eaten 2 chicken patties (in addition to the 1 she ate at supper) and a bunch of ice chips. She woke up with a cold/allergies(?) this morning so we kept her home from school to monitor her. She's really blowing her nose a lot, but does not have a cough or fever. Let's pray those don't develop or they won't do the biopsy.

We're going to leave around 5:30 a.m. for her 9:30 biopsy. We have to be there at 8:00 a.m. If all goes well, 6 hours after her biopsy we can leave the hospital and head over to the Kohl's House. Hopefully the weather will be nice enough to take her for a ride in BOB. Maybe we'll head down to the Lincoln Park Zoo...

She should get her PICC line pulled while she's under...we'll see on that, too. I don't know much else to say other than please pray for my Shelby.

Thank you.

5:55 a.m.

I am tired of automatically waking up at that time. That is when the shooting happened. My body just wakes up every day at that time now. We are lucky enough that I don't have to be up then; none of us do. Tell that to my body.

Scott and I are getting more and more worried about the biopsy. We will finally know what this mass is and what paths our lives will be taking. It could be benign and something that has to be watched closely to make sure it doesn't get too big or turn malignant OR it could be malignant, and, once it has been determined if it is contained to her liver, the (quick) road to transplant will be taken. I say "quick" because most likely we would use a living donor. Unless exception points are easy to come by with liver cancer (which I honestly don't know), the wait for her to get sick enough to make her PELD score high enough for an organ would allow too much time for more malignancies to form...and then she wouldn't be eligible for a transplant. WE WILL NOT LET THAT HAPPEN. I do think from my researching that you get listed by how far the cancer has progressed. Cancer is staged on a scale from 0 - IV. I think I read a stage 2 gets you listed, but any higher does not.

Today is Mother's Day. Guess what my wish is? Please, don't let Shelby have cancer.

May 12th

The biopsy date. I've asked how the IR doc is planning on going at this mass. I mean, its on the back of the liver. So, if you think of a needle used for biopsies (hallow & straight), how the heck are they going to get at this? All the way through the liver from the front? Through her rib cage in the back? I just don't know and so I've asked. Hopefully Cindy will get an answer and call me back in the next few days. Because they are taking a biopsy of a mass and not just "liver," they want her to stay in the Chicago area for the night rather than coming home. Just to be close for complications. Just in case. Like internal bleeding. I guess we'll tell the girls this weekend that the doctors need to do another test on Shelby's liver. We'll tell them that she'll have sleep medicine put in through her PICC line. Shelby will want to know more specifics and we'll tell her. "What are they going to do to me while I'm asleep?" You can't lie to a 7-year-old who will wake up having to lie on her side for 6 hours. We'll say "they're going to put a needle into your body where your liver is to take out a little, tiny piece so they can look at it under a microscope." She'll worry and be scared, but she'll know the truth and in the end, for this particular test anyway, I believe that will be best. If she asks "Why?" of course I'll sugar-coat that with a "they just need to check on your liver" type of answer. Not the truth of "well, they need to know if that thing on your liver is harmless or sinister (Dr. Superina's words)." So much to think about. So much rambling in my brain.

Tonight my Mom came and stayed with us while Scott went to class. I'm terrified to be the only adult here. Day or night. Terrified. I won't go in our basement because I'm scared. I have to sleep with the light on. I only want all of us to go from the van to the house and vice-versa. No playing outside. This "murder across the street" stuff really messes with you. I'm sitting on my couch thinking "if the shade were open, I'd be staring directly at where it happened."

I needed (yes, needed) yarn the other day. A week ago Sunday, remember in my post? I purchased this. Partially because it was on sale, partially because I just needed more yarn to keep my hands and mind busy. I started making a prayer shawl thinking I would give it to either RMH or CMH for a parent of a sick child. Then the murder happened. And I knew that this was Terri's shawl. She told me today that she just found out last weekend she was pregnant. They were so excited. She said she usually sits on the couch and waits for him to come home in the morning. Something - in her words "a God thing" - kept her from doing that that particular morning. She just couldn't get herself out of bed and ready from work. That saved her from seeing her husband get murdered or her shot. Eerie. Tomorrow she buries her husband. Unreal. I hope making this shawl will bring some healing to me and a lot of comfort to her. I can only pray.

Sleep?

Well, I didn't quite sleep like I had hoped. I slept for about 2 hours, but when it was time to run Shelby's meds (about 12:30 a.m.) I just could not doze back off...for 3 hours! I tried going back and sleeping with Riley, then came back out to the living room where Shelby & Scott were sleeping. Finally I just surfed the net until I couldn't see straight and crawled back in bed with Riley & Shelby. I then was able to sleep for about 4 hours. I did sneak in a nap today, though. We were still at my parent's house, Scott took the big girls to the park, and Avery was napping. The girls had a fabulous time playing outside today. That made me sad, though. I'm scared to death to let them play outside at our house. Even with us out there with them. I wish that murder never happened. I want to go back to my little world where I believed everything was safe. It will be a long, long time before I feel anything like that again.

When we got home this afternoon we realized that we only have 2 salines to flush Shelby's PICC line. We should have 18! We panicked and called the supplier of her IV meds. We got out our packing slips from the supplies we have received so far and counted. Turns out they started shorting us on the 2nd delivery. We know this because I made a spreadsheet. You see, when she gets her antibiotics, you use 1 saline, then the antibiotic, another saline and then heparin. Our salines and heparins should match the number of antibiotics we have - they don't. So, midnight's dose should be all good, but we'll have to wait until they get here with supplies tomorrow morning (they're supposed to be here by 10 a.m.) to run her 8 a.m. dose. That means missing school most of the morning. Grrrr...

Here's for some rest tonight...

Please pray for Emerson. Her health has deteriorated so much and she really, really needs prayers.

A get away

I just had to get away from our neighborhood for a night. Too many thoughts race through my head. The girls wanted a sleepover at my parent's house, so we (Scott, Avery & I) said we had to come along because Grammie didn't know how to do Shelby's IV meds. Pretty good excuse, huh? But, really this is for ME. The one who can't get the murder out of her head. The one who wishes they could move. The one who doesn't feel like home is HOME anymore. My heart is so heavy. Hopefully tonight I can get some peaceful sleep; not the panic-stricken awakenings I've been having the past 4 nights. I know staying up here for the night is no guarantee that I'll get a good night's sleep, but hopefully I'll be able to reassure myself when I wake that I am in a safe place.




We did hear from Chicago, but not an exact date. The IR doctor said May 12th or 13th would work for him. Shelby is still doing good.

Avery is breaking out in hives again. All on her face. ?????? is the only answer I have.