Clinic Visit

Mallory had another clinic visit today. Everything is still looking good. She continues to gain a little bit of weight each week, and is as active as ever. Her oxygen saturation levels continue to sit at 79 which is good for her. (People with normal hearts will run in the upper 90's). We were told she did have an offer for a heart this past weekend, but it wasn't a good offer. What is a good and what is a bad offer? A good offer would be what we had that brought us to St. Louis on March 2nd. A bad offer would be a donor who has been on any medications to help his/her heart function and or EKG's and other testing didn't come out as well as they wanted.

Papa Kenny and Grandma Jan are visiting us right now. Mallory also calls Grandma Jan Maga. It's always good to have family around. We took them on a tour of the hospital and went to the Zoo. The zoo has a brand new baby elephant and we actually got to see it! We took some great pictures at the zoo and even a very funny one of Papa Kenny next to one of the Apes named Grandpa. I'll see if I can get that picture posted on here for all to see!

Mallory and I are both enjoying being spoiled by the grandparents and just love having them around in general. It's a nice break for me to not have to follow Mallory around with the bag all the time. She does use her shopping cart in the apartment, but sometimes it just isn't fast enough and she wants someone to get the bag for her. She has really enjoyed "bossing" Papa and Maga around, and I know they enjoy seeing how much she has grown in the last month.

It's hard to believe it's been almost a month since Mallory and I have been at home in Nebraska! When we left there was 12 inches of snow on the ground and when we get home summer will be in full swing. Thanks again for all the comments you all have posted on this blog and all the wonderful notes and cards sent our way. We are truly blessed to live in such a supportive community and have the support outside of the community as well.

Thanks again!!

Wendy and Mallory

Family

We had a great weekend! Papa Larry, Maga Marilyn and Aunt KK (Kelly), came to St. Louis to spoil me, and they did a great job! My mommy says her stomach hurts from laughing so much. She told Daddy, Bobo and Sissy to stay home this last weekend so they could catch up on some things at home and get some sleep. :)

We went to the Gateway Arch and I showed everyone my Hospital. I even took them to the rooftop garden and play room at the hospital. They thought it was neat. Saturday night Papa and Maga took all of us out to dinner. Everyone had streak and I got to eat pizza YUMM-O! We had some excitement on Sunday morning. The fire alarms went off in the whole apartment complex. Mommy grabbed me, my medicine and her purse and ran out the door! Papa, Maga and KK were right behind us. Guess what? We were the only apartment out of the 8 who followed the rules and got out of the building right away! We found out later that someone in the other building was frying bacon for breakfast and it got away from them. :)

I was sad when everyone had to leave, and even wondered where they were when I woke up form my nap. Papa Kenny and Grandma Jan are on their way to spoil me next. They will be here on Wednesday. I love it when family visits! So does Mommy.

We are very lucky, we get a card in the mail almost every day. I love it when Mommy reads the card to me and I like to look at the bright colors on the front of the card. After I do that I usually throw the card to see how far it will go, or I put it in my mouth to see how it tastes. Some taste better than others. Thanks everyone for all the card and e-mails and phone calls. We really appreciate it!!

Hugs and Kisses to all!!
Mallory

Clinic Visit

Mallory had her weekly clinic appointment yesterday. Her oxygen saturations are consistantly up(79), she is gaining weight, and has a lot of energy. What all that means is her new medication, Milrinone, is doing what it is supposed to do. At clinic they said there haven't been any offers lately for Mallory, and they have a lot of kids waiting for hearts right now. As a "heart mom" I wanted to ask how many are the same blood type and weight as Mallory and how many are ahead of her on the list. Maybe I'll ask that next week. :)

My parents and sister, Kelly, are coming to see us this weekend. I told Scott and the kids to stay home one weekend so they could catch up on everything at home and around the farm. We are about one click away from having our web cam's hooked up. We are very excited to be able to see one another when we talk. I bet our cell phone bill will look much better too! :) Thanks to the Brammier and Goering Families for giving the web cam's to us. We are very thankful. Big thanks to Paula for helping us get them up and running!

Not much else to report at this time. It's been raining here so we have been spending more time inside. It's amazing how long a container of bubbles can entertain a 20 month old! :) Take care everyone, and thank you for all the offers of help you have extended. Right now we are taking everything one week at a time and we promise to let you allknow what we need help with when we figure it out! THANKS!!

Smile.

Thanks!

Hello everyone! First and foremost I would like to thank everyone who a attended the Prayer Vigil for Mallory on Thursday, March 15. Big thanks to Robyn for organizing it. Thanks also for everyone who continues to pray for mallory and our family, and for all the cards, calls and e-mails. It's always nice to hear from home.

Mallory and I were able to attend Disney on Ice on Friday, March 16. A very generous person donated their private suite and tickets to the performance. Since Mallory is the youngest resident who is not in the hospital at this time, she and I had the suite all to ourselves! She just loved all the lights and music, and most of all Mickey Mouse! She doesn't know about all the princesses yet, but when Mickey and Minney would come out she was very excited!

Scott and the kids were down this weekend. I took Logan and Madison to the St. Louis Science Center while Scott hung out with Mallory at the apratment. The kids loved the Science Center andf are ready to go back there on their next visit. Mallory quickly let Daddy know what our routine is. They finished playing a game, she walked over to her stroller and said "Daddy, walk, walk". She knew it was time for our afternoon walk! Scott and Mallory toured the neighborhood.

Home Health Care continues to come to us weekly to change the dressing on Mallory's arm, and we still see the Cardiologist weekly as well. I will update again after appointments, or when we get some exciting news.

Thanks again everyone!!

Back To St. Louis

A lot has happened since I last posted any information here. As most of you may know Mallory and I are back in St. Louis. It has been a very eventful two weeks .

• Mallory was scheduled to come to see Dr. Canter in St. Louis on March 5th for a re-check. Her cardiologist in Lincoln felt her condition was getting worse and wanted her seen ASAP. While we were waiting, and dreading the drive to St. Louis, we ended up getting 12-14 inches of snow. The kids were excited because there wasn't any school. On our second snow day, I decided it was time to start cleaning out closets. The kids and I had just gotten up stairs and started pulling everything out of closets when the phone call came in.
  
• 12:50pm March 2, 2007 : When I answered the phone and heard it was Tracy from the the transplant team, I assumed she was calling to remind me about our appointment for Monday. Then I heard the words, "We have a primary offer for Mallory, AeroCare will be contacting you within the next five minutes to let you know which airport to meet them at". I had to ask, "You mean you have a heart for Mallory?" The answer was yes.
  
• 1:00pm AeroCare called and asked us to meet them in Lincoln at 3;30pm


• A couple of frantic calls were made to Scott and the Grandparents and it was time to get a few things thrown in a suitcase. Logan packed for Scott and both kids were a great help getting things together to go.


• Scott had his dad call the County to have them come out and open the roads for us so we could get to the highway. They came out, no questions asked, and opened the roads to the highway. Scott was actually working in Lincoln and made it home in record time so we could once again "fly" up to Lincoln.


• 3:20pm We are at the airstrip to meet our plane.


• 3:30 pm Our plane takes off for St. Louis. Our flight nurse Wende was wonderful with Mallory. Mallory required some oxygen while in flight, but other than that she tolerated the flight, even slept through some of it.


• 4:28pm We've landed and the Ambulance is waiting to take us to the hospital. Mallory loved the Ambulance ride. No lights and sirens were required.


• 4:53pm We arrived at St. Louis Childrens Hospital. We checked in at admitting and were taken to 7 West to prepare for surgery.
  
• We were told Mallory was scheduled for the OR at 9:30 pm. While we were waiting they had to draw lots and lots of blood, and do a bunch of other prep you don't even want to know about. Nancy, one of the transplant coordinators came to check on us. All she could tell us about the donor was it was a 20 month old, Caucasian, male, and all the important numbers looked good on paper, as well as his Echo. We were so excited, and nervous and still in disbelief that this was actually happening.


• 9:20pm We walked Mallory down to the OR. They gave her some medicine to make her drowsy so the separation would not be as hard on her. We were told it would take about one and one-half hours to get her prep ed, intibated and all the lines in that would be needed. Scott and I were taken to the waiting lounge, told to get something to eat, and given blankets and pillows. We were in for a long night. The surgery itself would take approximately 7 to 8 hours.


• 10:35pm Bad News. Dr. Huddleston, Mallory's surgeon, came out to tell us the donor heart is no good. The right ventricle does not pump like it should. They were 5 minutes away from making the skin incision on Mallory when they got the phone call that the surgery wasn't going to happen. We were warned that this could happen but you just never think it's going to happen to you. We were told we could see her in about an hour when she was moved to the PICU so they could wake her up and get her breathing on her own again.


• March 3, 2007 12:50am Mallory was finally taken off the vent. Scott and I were sent off to catch a few hours of sleep while Mallory was still sedated. At this point we had no idea how we were getting home and where we were going to stay. We had reservations to stay at the Parkway Hotel on Sunday since we were scheduled for a re-check on Monday. We were told they would keep Mallory in the hospital and discharge her on Sunday so we could stay in the hotel and make it to our appointment on Monday.
  

On Monday, March 5th, we saw Dr. Canter, did an Echo and EKG, and the decision was made by Dr. Canter that Mallory's condition was getting worse and she needed to stay in St. Louis and wait for a heart. She would be moved up to a status of 1A-the most critical- and would need continuous IV medication. Mallory was admitted to SLCH once again so they could put a continuous IV in her arm and start the new medication-Milrinon. Scott and I had rented a car in hopes that the three of us would be going back home together. No such luck.

At 6:00pm Dr. Huddleston put the PICC line in Mallory's left arm and the Milrinon was started on Tuesday morning. Mallory was kept in the hospital until Friday so her heart rate and blood pressure could be closely monitored.

Being the trooper that she is, Mallory tolorated the new medication very well. She had no problems with it at all. She actually started eating better. That is one of the positive side effects of this medication. :) Since she was doing so well she was able to go to the Child Life play room and play with all the different toys, and was able to participate in music therapy. She was also inducted into the SLCH Play Room Princess Club, and became an official member of the band with the music therapist-she even has a t-shirt to prove it!

On Wednesday March 7, I was told we were able to get into one of the apartments at the Ronald McDonald House. So I signed all the papers and picked up my key.

Mallory was released from the hospital on Friday, March 9, 2007. She still has weekly cardiology visits at the hospital and a Home Health Care Nurse comes by every other day to help change her IV medications. As of Tuesday, 3/13/07, I have passed the test so I can now change Mallory's medications on the pumps she has to have here. It's kind of funny, the backpack which holds the pumps for the medication is as big as Mallory and weighs as much as she does. So, she is like a puppy on a string. She can only go so far, and when she wants to move outside her radius she say "Mom! Bag!" That means Mommy, pick up the bag and lets go over here.

Scott and the kids come down on the weekends. Other family is planning on coming to see us during the week so Scott and the kids can have the weekends.

Sorry this update is so long, I promise the next ones will not be as lengthy as this. Just know that we are doing well, and praying the perfect heart comes very soon. We do know that post-transplant, Mallory will have to stay in St. Louis for one month. We would like to get going on that month ASAP!

I have my cell phone with me if anyone wants to call: (402)432-2852 and our address here is:

Wendy and Mallory Mueller, 4381 West Pine Blvd., Apt.A, St. Louis, MO 63108 And our e-mail address is swmueller@windstream.net

Thanks to everyone for all the good thoughts and prayers sent our way. We would love to hear from everyone! Thanks! Wendy

My Brother and Sister

Look at this neat photo of Logan and Madison. I am so proud of them for being the top jumpers in raising money for Hearts at Syracuse-Dunbar-Avoca Elementary School.

Logan is a first grader and was the top donation student, he brought in $250. Madison is a kindergartner and she raised $220 and came in second.

Here's a picture of me and my Mommy on Halloween, 2006. I'm so glad I got to be home...our family loves Halloween....especially my brother and sister. Right now, Mommy and me are in St. Louis spending lots of quality time together. We're not sure what lies ahead for us but each day that goes by means that I am one day closer to getting my new heart! We miss you all and thank you for all of your love and support!

Me and my Daddy on Christmas Eve 2006. One of my favorite places is in his arms!