T+175 She's Laughing Again!

Despite having another positive blood culture on Monday, Torie is feeling so much better, and she's finally laughing again! She's more talkative, and she's starting to get a bit more active. We saw Dr. Mike yesterday morning, and she even talked to him again. She hasn't done that since we got back from Minnesota. After we left his office, we went to get more blood drawn.

Donna gives Torie the tops from heparin bottles and flushes in a specimen cup. Torie thinks it's lots of fun to shake them and make as much noise as she can with them! She had another blood culture drawn and so far it is negative. Hopefully it will stay that way!

Besides being Day +175, this is also the 175th post on Torie's Story. Thank you for following us this far, and for all you've done for Torie and the rest of our family. We are forever grateful for your support and love...Vic-Torie!

T+173 Back Home!

Torie was discharged from Peds today and she is home in her own bed tonight! She'll be on home antibiotics (Vancomycin) for 2 more weeks. Tomorrow morning she has an appointment with Dr. Mike, and then lab work after to check her CSA level. Thanks for all your help getting her home...Vic-Torie!

T+172 Home Tomorrow?

Again, I'm sorry for not updating sooner. Torie is still on Peds, and I have been too. Working, that is. Torie's blood culture from Friday was negative, and we thought she would get to go home Sunday morning. But, since she likes to keep everybody on their toes, she started running a fever Saturday night...up to about 101. Instead of going home, she got started on the 48-hour Vanco/Fortaz routine. She got her first dose of Fortaz Sunday morning, Heather was able to get her line working again, and by the afternoon she really turned around. She was talking more than she has for a week! Today was another good day - Torie was up with PT, and she is starting to move a little more. Her labs look better, and we are cautiously optimistic that she will go home tomorrow! Please cross your finger and toes, and send some happy thoughts Torie's way...with your help, I'll be posting that she is home next time! Vic-Torie!

T+169 Still on Peds

I'm sorry for not updating yesterday...it was long, and, I must admit, I was tired. Torie had a blood culture and a CSA level drawn yesterday morning, but her other labs were missed. They had a hard time drawing those, and then when we tried to get the rest, her line wouldn't work. We tried tPa (the clot buster) with no results. Karen came up from the lab to draw, and she was able to get some blood, but the results were really wacky. Now what to do? We tried more tPa, and it didn't work either. We were now faced with a dilemma. Try a new line under anesthesia (not ideal) or a PICC line (another poke)? Neither is ideal. We decided to wait until this morning and try tPA one more time, and if that didn't work, we'd look at placing a PICC line. Luckily, Heather was on, and besides being "PICC-placer extraordinaire", she is also my very best friend. I definitely wanted her to do it, because if she didn't get it, I could kick her in the shins again. I got to the hospital early this morning, and Torie and Lexie were just waking up. My cute furry puppy was laying on her tummy, and she had a curly tuft of hair poking up between her jammies and her shirt...it looked like she was wagging her tail!

Heather came in very first thing after shift change with tPA. She was getting ready to put it in Torie's line, and drew back on it out of habit. Glory be, it worked! It drew back with all the blood we could have dreamed of, just like it was supposed to. Heather and I started jumping around.."Get this! Look at that! Go grab me one of those!" and so on. Heather has been a great support (as have so many others!) through all this. We both looked at all the blood that drew back like we were looking at winning lottery numbers. So, for now, we'll stick with this line, and try to treat this infection through it. And we'll take it one day at a time.

Torie's blood culture from yesterday was positive this evening. I'm not comfortable with her being discharged with home antibiotics until she has a blood culture that is negative for 48 hours. Her CSA level has been really high...700's. I think that she was so dehydrated that her kidneys were holding on to all that CSA. Her urine output is picking up finally, and her CSA level is coming down. She'll have another one checked in the morning, as well as another blood culture. Her other labs are normalizing a bit. She has been up with PT, and she's moving a little bit more. Today she also had a visit from Robin, one of the Wound Care nurses. Torie has a granuloma at her G-Tube site - the edge of her site has extra tissue coming out around it. Robin cauterized it with silver nitrate, so hopefully it will heal up and start looking a little better (Don't freak, Kim - I'll explain it more in depth to you. [Kim and Pat are looking at a G-Tube for Joseph.] It's not a big deal!) and Torie has special "pink button cream" to go on it. She's taking baby steps, but that is what it takes to go on after BMT.

Please keep up those prayers for Torie, and for her friends. Josiah got his line out today - Way to go, our dear twin-triplet! Torie has always been about 2 weeks behind Josiah. I hope it's still that way! Send some extra happy thoughts that her blood cultures come back negative soon so she can get home...Thanks! Vic-Torie!

T+167 Change That to 2 Steps...

Torie was admitted to Peds last night with a positive blood culture. She is doing much better today, so let me catch you up. Yesterday morning, Lexie and Scott took Torie to PT. Her new therapist, Beth, was also concerned about Torie's lack of movement. She wants to get Torie in 3 to 4 times a week to start. Torie did walk a little bit, but she just wasn't feeling too perky. Yesterday afternoon I went to Dr. Mike's with Lexie and Torie. We told Dr. Mike that she hadn't been eating or drinking much, although she wasn't throwing up anymore. Dr. Mike stopped Torie's Bumex (diuretic) and cut her Labetolol (blood pressure med) in half. I told Dr. Mike that I just felt like something was going on, but we couldn't nail down anything specific. Lexie had to go to work, and Torie was going to have a sleepover at the Great's, so I took her over there. I hadn't been home long when Trisha from Peds called me. Torie's blood culture from Monday morning was positive. That sure explains why she hadn't been feeling so hot! Mom and I took her up to Peds so she could get started on Vancomycin...again. Torie and I had another hospital slumber party. The highest her fever went was 100.4F/38.0C and it came down with some Tylenol. She had another blood culture drawn, as well as a CBC and some chemistry's. Her WBC's dropped to 3.6, and platelets went down to 121. Her sodium was still low - 129, but potassium came up to 3.1 after stopping the Bumex. She had to get poked for another blood culture. She was so brave with her poke...even though she was crying, she kept saying "Torie get a bandaid when poke all done." Even with all I've seen her go through, she amazes me with her bravery every time.

She had a much better day. She's starting to eat more and talk more. She got up with PT and played with the kitchen in the playroom and zoomed around in the firetruck. And she was laughing! Hooray! I think of all the things I've ever heard, Torie's laughter is the sweetest sound in the world. It's contagious - when Torie giggles and laughs, you can't help but join in! Her blood culture from her line last night has come back positive, but so far the peripheral (the poke) culture is negative. Tomorrow she'll have another blood culture and more labs. She'll also have over 24 hours of antibiotics in her little self. And hopefully we are all 24 hours closer to getting the Tor-Nado tearing around again. Thanks for hanging in there with us. You are appreciated and so are your happy thoughts and prayers...please keep sending them! Vic-Torie!

T+165 Line Working Again!

After using tPA again today, and a few other tricks, Heather got Torie's line to draw! Hooray! We finally got labs, and her sodium and potassium are still low - 130 and 2.6 today. Torie got some more IV fluid, and she has an appointment with Dr. Mike tomorrow. I still think we have to get some of her diuretics decreased! We'll see what happens. We did get some good news today - Torie has an evaluation with PT (physical therapy) tomorrow morning at 9:00. Finally. She hasn't taken more than just a few steps since Mother's Day. More than TWO months now. Her little legs keep getting weaker and weaker. Hopefully with her weight down and some extra help, she'll start moving more. You've maybe seen some comments about "Tor-Nado" or "Torie-nado" and I had said that when we left Minnesota that we were taking the "Tor-Nado" with us. But I don't know if I ever explained WHY we say that. My Dad was the first one to call her that. It started about as soon as she could walk. She'd go through a room and get out EVERYTHING. If it was in reach, she'd get it. And it looked like a whirlwind had been through. Papa-Great said, "Yep. The Tor-Nado blew through."

I, and the rest of our family, have a lot of wants for Torie. I want to see her engraftment levels at 100%. I want her to be able to go outside without her mask. I want her to be done with steroids. And CSA. And blood pressure medicine. I want her to feel like she did before she got Nephrotic Syndrome. There are a lot more. But right now, I want her to walk. I want her to run. I want the Tor-Nado to blow again. Please send some extra prayers to our sweet Tor-Nado, that she can gather the strength and energy to start being her whirlwind self again...Blow, Tor-Nado, Blow! Vic-Torie!

T+164 Only a Half Step Back

For the last week, Torie has been throwing up in the morning again. But today, it's been all day. After talking to Dr. Zind, we decided to check some labs and give her some fluid. You can tell she's not feeling great from her picture. Just kinda puny. Unfortunately, we are having problems with her Hickman line (the one that goes into her heart to get blood from and give fluids through). Last week she had to have tPA put in to try to dissolve any clots, and it worked great. Not so great tonight. We are able to flush her line, and give fluids through it, but we can't get blood from it. After waiting for almost 3 hours and trying all kinds of different tricks, we decided to just give her some fluid and try to get blood in the morning. Jeez. We're quite envious of Josiah - he gets his line out on Friday! And speaking of Josiah, be sure to check his blog for some great pictures of our twin-triplets and the rest of our Tennessee family. Between barf bouts today, Torie looked at their pictures and was so glad to see the Carman's. "That Ojiah. That Jay. That Sisters. That Paw-Paw. That the Mommy and Daddy." Torie and Mom and I miss that gang a bunch.

Since being on her steroid wean, Torie has really slowed down on the groceries. Especially today. Her weight today is down to 15.6 kg, and last week she was 16.5 kg. That's about 2 pounds in 6 days. She hasn't been drinking her gallon of milk every day, and her diuretic dose hasn't changed. I'm worried that she's having too much fluid pulled off. We see Dr. Mike on Tuesday, so hopefully he'll have some new ideas. And hopefully that little bit of IV fluid will perk her up. Did you notice how curly her hair is getting? We're hoping it will look like Rylie's when it gets longer! Anyway, please send her some happy thoughts and prayers that she'll feel better soon....Vic-Torie!

T+160 Better Every Day!

I'm sorry I haven't posted anything for awhile, but there hasn't been a lot going on. Until yesterday. Last week Torie had engraftment levels drawn. These have to be done in Minneapolis, because that's where Torie's donor sample is. By the time the blood is Fed-Ex'd and run, we have to wait longer. Anyway, Teresa called me yesterday with results, and (Drumroll, please!), Torie's engraftment levels are UP! CD3 is up from 33% to a whopping 59% and CD15 is now 100%! I wish I had the words to tell you our joy at hearing this. I jumped up and down and cried. What a relief this news is! Her other labs are looking good, too. Liver enzymes are down in the 20's. Her potassium is still low, 2.6, but it is coming up slowly. Torie's blood pressure is down, and her labetolol was changed from 3 times a day to only 2. WooHoo - Progress! Her weight has come down quite a bit. Since starting her steroid wean, she has slowed down on her eating a bunch. But she's talking, laughing, and playing more. And best of all, her sense of humor is coming back! I think she just feels better. She's starting to act more like her old self. Tom's brother Eddy and his wife Lanny were here last weekend. Torie talked to them more than she has other people in a long time, and we had a great visit with them.

Engraftment is something we'll have to worry about for quite awhile, but we love to see these levels rise. Thanks for the prayers and happy thoughts...we know that you're helping. So, in the meantime...Engraft! Vic-Torie!

T+153 Back Home Again

Torie was discharged from the hospital last night about 7:30 and was happy to be going home with her Mommy and Daddy. Her CSA level dropped to the 400's yesterday afternoon, and today she was down in the 200's. We'll go back tomorrow to check again. When her level is down around 150 - I'm betting tomorrow - she'll start back on her CSA. Her other labs are looking good except for potassium. Yesterday it dropped to 2.2, so she's back on that. Her BUN is almost normal, and her liver enzymes are better than they've been. After much discussion between the docs here and in Minnesota, Torie is off VFend(voriconizole). This is the antifungal she's been on. Unfortunately, after she's been on it for about a week, her liver starts protesting. Then it takes about 3 weeks for enzyme levels to drop enough to restart it. She ends up with very little coverage this way. Now she's on fluconizole. I picked it up today and I was so excited to see the price tag...it's only $491.00 a month. Sure beats $1700! We're trying to get her back into PT, and they saw her yesterday in the hospital. Hopefully that will get her into the outpatient system a little more quickly. She has gotten so weak (and fat!) that she has to start moving more. Cross your fingers they'll get her in soon! Vic-Torie!

T+151 Farewell, Cowboy DaNNY

Today our angel friend, Cowboy DaNNY, was laid to rest in his hometown of Lakefield, Minnesota.
We took a few moments to say a prayer for Danny, and for his family to find peace and strength in the days ahead.

Torie had to be re-admitted to the hospital today because her CSA level was REALLY high. We just got her most recent level back and it is coming down nicely. She's doing great and she'll probably be able to go home in the morning. It's much different being here. I've been able to catch up with some of my night-shift girls, and Torie finally got to meet Kati, our monthly Santa Claus! Kati took such good care of us when we were in Minnesota. She sent cards and candy, blankets and books, presents and prizes, stickers and Starbucks, and love and support. And she wasn't the only one! Another plus...the chair-beds are way more comfortable. We truly are blessed.

Today is our friend Joseph's very merry 6-month Un-Birthday. Unfortunately, he has to celebrate it in the hospital, so please send him some happy thoughts and prayers that he will be able to go back to Ronald McDonald House soon. Again, thanks for checking in! Vic-Torie!

T+150 & Fireworks!

What a celebration for Torie and Josiah's day 150! The whole nation is showing their support for the Twin-Triplets! I hope you are all celebrating this day as much as we are!

Our other reason to celebrate today is the start of Torie's steroid wean. She has been on 15mg of prednisolone twice a day for the last 6 weeks. (Has it really been that long? I guess so.) She will now be getting 24mg once a day, every other day, for another 6 weeks. She is still eating anything and everything, but maybe she'll slow down a little bit now. Her last weight was up to 18.1 kg. She had an XRay of her belly to make sure she doesn't have more fluid or poo, but they didn't see much on it except for her great big liver. And hopefully she'll start feeling a little more like her old self. Steroids aren't pretty! A few of her favorite things to say are "NO." And "NOT." And "NO WAY." But most of the time she puts them all together, and I can't help but laugh. It goes like this..."No Mama. NO NO NOT NO WAY." I know it doesn't sound very nice, but it really is funny in her cute little voice. I think sometimes she just doesn't feel very good. Like I said, steroids aren't pretty.

She got to go home to her new house and her polka-dot room on Thursday. We had packed most of our stuff and shipped it back right before she decided to do the Hemolytic Anemia and Nephrotic Syndrome thing. So she had a ton of toys and "stuff" that she hadn't seen for more than a month. She was super happy to see her Elmo and Abby Cadabby balloons from her birthday party, and her jungle, just to name a few. She's still got boxes to open with more "stuff." She couldn't wait to play on her slide, too. And she loves being with her Mommy, Daddy, Paris, G-Dog, and Catman. It's taken awhile, but I think we're all finally settling back into some of our old routines.

Happy 4th of July to all and thank you for your continued happy thoughts and prayers, not just for us, but for all our friends that we've become so close to along our way. Torie still has hurdles, but she's made it to this milestone, and I can't wait for the next ones! Vic-Torie!