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