Going Home....

Well, today is supposed to be our last day here at Dell Children's.  Reagan will receive her last dose of i.v. antibiotics at 5pm today and then we will be discharged.  She will unfortunatley have to have oral antibiotics at home for another 2 weeks but at least it will be at home.  Other than starting the i.v. the first night, I think Reagan has enjoyed her time here.  Seeing that she feels fine and all, we have gotten out of the room many times to go on wagon rides (her i.v. is in her foot so she hasn't been able to walk since Thur. night). 

getting all settled in Thurs. night before getting her i.v.

hanging out by the waterfall with my new crown

checking out all the water features here at Dell

enjoying her food trays

Yummy Cream Cheese & bagels

giving herself a breathing treatment

having a sucker party

finally, relaxing & watching her favorite movie, Toy Story

I'm not even sure if her blood culture that grew salmonella was real or not but the infectious disease dr. did say she had one other child that this happened too and they treated her the same way as Reagan and she was fine.  I'm thankful Reagan's team of caretakers heir on the side of safety for her because we would not have wanted the salmonella to spread and make her really sick.  I was able to retreat home Friday to go to a doctors appt. myself and spend some one on one time with Nolan.  I tried to get him to go to a movie with me and out to eat but he preferred Chuck E. Cheese instead so that's where we spent our date night. 

Mimi & PawPaw stayed with Reagan Friday night and then I relieved them on Saturday.  Thank you so much for helping out.  Also, thanks to Warren & Lori Kostencski for having Nolan spend the weekend with them so I could come back to the hospital on Sat.  I'm sure Nolan had much more fun with your boys than he would have in the hospital.  Thank you so much!!! 
Well, Reagan has her follow-up appts with cardiology and hematology on Tues.  The cardiologist will probably do an echo and check on the blood clot and then the hematologist will do a lab draw to check Reagan's lovenox levels and discuss how long of a course of these shots she will have to do.  Hopefully, a shorter than longer course as she is bruised all over from the shots and has only been on them a week now. 
Lastly, when we were in the hospital in California, we met the LaPointe family- baby Arden's parents.  Reagan fell in love with Arden and played with her big brother Elliot at Ronald McDonald House. 

Arden LaPointe

Arden has spent the majority of the time in the hospital since her birth with only a short period of time at home.  Please pray that the doctors can decide the best treatment for her heart so that she can be able to go home with her family. 

Unfortunately......

Reagan had to be readmitted last night (Thurs.) to Dell Children's in Austin.  Because she had the positive blood culture from Sunday that grew salmonella (go figure on that one) the Infectious Disease docs felt it better to treat it as real given the fact that Reagan is such a high risk patient and is immune compromised.  Although she has no outward signs of being sick, if the culture were real they would not want the salmonella to invent her blood clot or her "artificial" parts in her heart or nothing else, to say the least.  They are being safe rather than sorry because if she did start getting "sick" from the salmonella in the blood it would not be good.  Hopefully, she will only need 5 days of antibiotics given her clinical healthiness.  Wednesday when I took her into the pediatrician and got her a rocephin shot counts as Day 1 so it looks like Sunday could be her last day for the i.v. antibiotic (with all fingers crossed that no other cultures come back positive).  As of now, the culture from Monday is still negative and the ones from Wed. are still pending.  Also, please pray her i.v. holds until Sunday because it is only half way in but is flushing o.k. for now so we're holding onto what we've got with positive thoughts.  She also continues to get her twice a day lovenox shots while in the hospital.  At least, I get a break from giving them to her for a short while and someone else gets to be the bad guy.  Although she is in the hospital for now she seems perfectly healthy and happy so I actually drove back to Temple this morning to make a doctor's appt. for myself that had already been rescheduled once from our hospitalization earlier this week.  My mom, Mimi, is staying with her now and they are hanging out, playing, eating and watching movies.  I pray she stays this way through completion of the antibiotics and we don't 'pick up' anything else while in the hospital.
Last night after admitting, we had some special visitors to see us.  SFC Mahannah's wife, Nadia & 2 kids came by to visit and brought Reagan a get well gift from "all of Daddy's friends".  Nadia's husband and Rod work together in the same unit but we have never met.  Thank you Nadia for taking the time to come by.  It was very nice meeting you and we appreciate your sweet spirit!
Thanks again to Mimi, PawPaw, Aunt Kay & Marisa Conley for helping me with Nolan so far.  I'm trying to avoid Nolan having to spend time in the hospital as it's not fair for him. & since Ronald McDonald doesn't have a place to retreat from the hospital we are all taking turns spending the nights with Reagan and driving back & forth to Temple.  As long as Reagan remains stable, I am going to spend the evening at home with Nolan, maybe have a mommy/son date night tonight and then take MiMi and PawPaw's place at the hospital tomorrow through discharge.  Thank you, thank you sooo much for all your help!!

Crazy change of events!!!!!

Crazy day yesterday..was about ready to have my prozac dose upped!!  When Reagan was in hospital Sunday, labs were drawn.  Monday she came up with a positive blood culture but they went ahead and let us go home thinking it was just a bad sample.  Now that culture is growing salmonella?!?!  Yesterday, dr. was getting ready to readmit her to start i.v. antibiotics to treat it but there wasn't a bed available at hospital so we were able to stay home last night.  Instead had to take her to pediatrician for another lab draw (took 3 pokes to get enough blood) and get a rocephin shot.  That's four pokes with needles in one dr. visit.  Needless to say, she and I both were worn out afterwards.  We are waiting today for news from dr. on what is going to be done.  May still have to admit in hospital.  I pray not as Ronald McDonald House has no openings right now. 
She looks wonderful and is playing non-stop.  So hard to go admit her where she'd be tethered to a monitor round the clock!  Pray, pray, praying for good news!!

Hospital Update

Just a quick update from our short hospital stay.  First of all, let me say "Thank you, Lord" that is was only an overnight stay.  One of our shortest hospital stays ever!!  We checked in Sunday morning and Reagan received her first shot of Lovenox around 2pm.  4 hrs later labs were drawn to check the lovenox level.  Thankfully, it was perfect so her dose did not have to be altered.  At midnight, she received her second shot.  Monday morning, Kay and I practiced giving shots.  Aunt Kay actually let me give her just a shot of normal saline to practice before giving Reagan hers.  I then bravely administered my first shot ever.  It wasn't as bad, for me at least, as I was expecting.  I'm sure Reagan might feel a little differently.  Anyway, we started giving her stickers after each shot so now she's asking for stickers all the time, ha!  Monday afternoon, she was discharged and we all three came home.  Kay comes over to the house everyday at 9am and 9pm to hold her while I give her the shot.  We have follow-up appts. next Tuesday in Austin with cardiology and hematology.  The hematologist will do a lab draw to make sure her levels are still good and talk with me about duration of therapy and how often lab draws have to be done.  I've heard anywhere from 3-6 months of shots.  Yuck, I'm praying for the shorter course but most importantly, that the Lovenox takes care of the blood clot.
Everyone at Dell Children's could not believe how big Reagan is.  The last hospital stay we had there was in Oct. of '08 so needless to say, she looks a little different now.  They were all coming in and saying hi to her and she would just look at them like who are you.  I told her these people took care of you when you were a very sick baby & she would just smile.
Here are some pics from our short stay.

enjoying some of my mom's lunch

outside Sunday night by the waterfall (I took 3 pics and she closed her eyes for all 3)

watching Toy Story on the laptop with her new Elmo she got off the hospital Toy Cart

Thank you all again for your prayers!  Keep praying the clot is resolved quickly.