It is Tuesday morning and we are home!  Thomas is happily playing with his sisters in the living room while I sit at the computer to type this.  I wanted to take a few minutes to write out our experience and to thank everyone who lifted prayers for us or were involved in some way in this whole process.

Thomas and I headed down to Milwaukee Thursday evening to check into the Ronald McDonald house.  Due to the hospital restrictions, all pre-op procedures had been moved to the morning of the surgery.  Surgery was scheduled to start at 7:30 AM, so we needed to check in to pre-op by 6 AM.  However, at 5 AM I received a call that our morning schedule had changed.  Thomas’ COVID test did not work the day before (they did not get enough of a sample to get a result) and therefore his COVID test needed to be re-done Friday morning, as he would not be allowed on the surgical floor until they had his test results.  So, after running around to different parts of the hospital and outpatient buildings Friday morning, we were able to head up to pre-op by 8:30 AM.  

Once up in pre-op, things went very quickly and by 9:30, Thomas was taken back to the OR and I was escorted to the Parent Surgical Waiting area.  I had had a slight headache all morning.  I attributed this to stress, dehydration, and lack of sleep (poor Thomas did not sleep well the night before and woke up several times in the middle of the night, saying he was scared).  However, once in the Surgical Waiting Area, I began to feel sick.  I started to text Pete that I wasn’t feeling well, but I kind of brushed it off that I probably just needed to eat and would get food once the surgical nurse and the doctor came to see me.  I will not bore you all with the details, but I now know that I was having a panic attack.  I had never had one before and I was convinced I was sick and I was terrified that someone would realize it and kick me out of the hospital. It took about an hour, and an emptying of my stomach (yep, thank GOD no one came into the bathroom during that time), for my breathing to regulate and for me to feel normal again. During that time, Pete made the decision to leave our other kids at home and hop in the car to come down to give me a break, if needed.  

While waiting in the surgical waiting area, one of the surgical nurses would come in every hour to update me on how the surgery was going.  The surgery would take 4-6 hours. At the second update, the nurse stated that by the next update Thomas would be on bypass and the repair would begin.  What was shocking, though, was that by the third update, the nurse came out to stay that Thomas was already on, and off of bypass!  He only needed to be on bypass for 18 min and they were able to allow his heart to beat the whole time he was on bypass!  The nurse said that the team was nearing the end of the surgery and the surgeon would be out to talk to me in about an hour.  But, I was in for another surprise . . . about 15 min after the nurse had come out, Dr. Haraska walked through the door and sat near me.  I smiled (although he couldn’t see it due to my mask!), and said to him, “I’m a little surprised to see you so soon!”  He then went on to share that he was done.  The surgery went well and the repair seemed to be successful! He shared details about Thomas' heart anatomy and function that could only be truly known through open-heart surgery.  Thomas was transferred from the OR to the CICU around 1:30 PM and I was taken back into the hallway to see him during the transfer.  I was so happy to see him!  The anesthesiologist filled me in on how he was doing and the next few steps (They were able to successfully extubate him in the OR, which was HUGE!).  And, around 2:45 PM, I was able to go into the CICU room and be with Thomas!  

By that time Pete was at the Ronald McDonald House, waiting for me to say I was ready to leave the hospital.  I spent some time with Thomas and then Pete and I spent the next few hours switching off in the CICU.  Thomas spent that first day and night under sedation and it wasn’t until the next morning that he was more awake and talkative. Pete went back home Saturday afternoon.  Thomas was doing incredibly well and the whole CICU team was really pleased with how great everything was going.  Thomas spent most of the day Saturday getting many tubes out, he even got out of bed to sit in a chair for a little while! By Sunday morning, he was cleared to get his chest tubes out and to move out of the CICU to the acute care floor!  During rounds that morning, I asked, “I know you cannot say for sure, but how much longer do you anticipate that Thomas will need to stay in the hospital?”  The cardiologist basically said that he was flying through his recovery in a rockstar fashion and that Monday morning they would order an echocardiogram and as long as the echo looked good, Thomas would be able to go home Monday!  

Thomas eating his beloved popsicle in the CICU!

On the Acute Care floor, Thomas and I spent time playing games, building Legos, and having a movie night.  It was a pretty special Mother’s Day.  Days before, I could not imagine my little boy being able to do so much so soon after surgery.  Monday morning came and we headed down to the Heart Center for his echo.  By late morning, I began getting texts stating that he had a scheduled appointment with his local cardiologist the following week.  Since I hadn’t made these appointments, I figured that that was a sign that the team had met and they would be allowing Thomas to go home later in the day.  So, we had visitors throughout the morning at that point.  PT came by to show Thomas how to navigate stairs and to tell me what we can allow him to do at home and what to avoid.  OT came and gave us a list of exercises to do at home.  A PA came by and removed and replaced bandages.  And, finally, the cardiologist stopped by.  He filled us in about the team meeting in the morning, Thomas' echo results, and then said the words we were both waiting to hear, “You can go home today!”  Thomas began crying at that point and said, “I am just so happy!”  The cardiologist said that Thomas had amazed the team and that his numbers and stats for a child just 3 days post-surgery were incredible. We were told by the team, in the beginning, to prepare for 5-10 days in the hospital, so to only spend 4 days in the hospital was a happy surprise to everyone.

Life will be pretty slow for the next several weeks.  Although Thomas’ recovery has amazed everyone, he still did have major surgery and needs to be slow and intentional in his recovery.  However, I woke up this morning and immediately walked into his bedroom to see him.  The whole family was up and Thomas was sitting on his floor with his sisters and a couple of his brothers, happily playing. I immediately asked him a million questions, making sure he was ok and then I sat down on his bed, just to watch him a little. As I sat there, I began to cry.  I honestly do not use this word lightly, but I truly believe that his surgery and recovery have been miraculous.  And I attribute that to all of the prayers that so many lifted up for Thomas.

Why am I sharing all of this with you all willing to read it?  Because I want to thank you all.  I want you all to know that you have sustained our family and we are grateful for every prayer, for every meal, that everyone has offered for Thomas and our family.  So, please bear with me as I take a moment to thank everyone.

First, to all of you who have prayed.  THANK YOU!  Thank you for lifting up prayers, especially when we could not.  I was useless while Thomas was in surgery!  I could not even think straight during that time, and you all lifted up my little man and carried him in prayer when I could not.  So, thank you! For all of those who joined in our Novena, for the teens on the prayer call who prayed for Thomas, and for those who lit candles, offered up holy hours, and remembered Thomas in your prayers, we are forever grateful!

To all of those who have made meals and who will bring us meals (or gift cards) . . . THANK YOU.  This mom thanks you for providing a basic need for our family, when my attentions need to be elsewhere. 

To our neighbors . . .and you know who you all are :-)  . . ..  THANK YOU for keeping an eye out for our kids when Pete had to come down to Milwaukee to be with Thomas and I.  Thank you for the cinnamon rolls for the kids!  Thank you to the neighbors who made signs and participated in the jump around!  Thomas was brought to tears when he saw the video!  Thank you to the neighbors who made special meals and those who prayed and sent texts!  We are forever grateful to you all and could not imagine having better neighbors!

To the staff, donors, and volunteers at Ronald McDonald House of Eastern Wisconsin.  And, to the local restaurants that donated delicious meals. You made this time so much easier.  You made Mother's Day Special and gave us a haven to go to in the midst of the stress of all of this.  Thank you for serving families!

And finally, to the doctors, nurses, and staff at Children’s Hospital of Wisconsin - Milwaukee.  Each and every staff member we encountered was caring, kind, and helpful. I would recommend it to anyone. Thank you to Dr. Hraska (the surgeon), Dr. Stuth and Dr. Kale (the head anesthesiologist and his assistant), and the surgical team . … you took such good care of our boy and were amazing every step of the way!  To the CICU team, especially Thomas’ nurses: Kaitlyn, Amy, Kirsten, and Allison.  You all were AWESOME! To Leslie, the cardiac Child Life Specialist, you made Thomas’ stay at the hospital so special.  The acute care team and nurses (Zouha, Shain, and Sarah) and Dr. Ginde (who gave us the final report and “go home orders”), THANK you! Even though Thomas was with you just a short time, you were so attentive to us! And, to my adoptive friend Diane (a PT at the hospital), your visit with me in the Surgical waiting area meant so much to me. Thank you for taking the time out of your schedule to visit me and help calm this mom’s anxious heart!

Know that we are remembering you all and your kindness to Thomas and our family in our daily prayers!