One Month Since The Nightmare; One Week Post Transplant

Wow, I cannot believe it has only been a month since the nightmare started. In a month, our son has been to 3 hospitals, diagnosed with cardiomyopathy, gotten a mechanical heart, and a new heart. Whew! It all still has not sunken in and I am not sure when it will. I do know I am forever grateful for the donor and their family. My cousin Paige sent me this and I thought it was so beautiful and well said.

Sunday I got a big surprise! An email with a flight confirmation for my dad, older sister, and my niece Grace! They are coming out next month to see Beckett and I. I have the best family. Their support has been everything to me. I wouldn't have half the strength I do if it wasn't for their love and support. Sunday night we watched some football! We were cheering on a CCHS alumni that plays for the New England Patriots. Beckett must have been a good luck charm because they are going to the Superbowl!

Monday, was Alex's last full day with Beckett. We are going to miss her so much! Today, she got a great picture of Beckett. Scar, mohawk, and drugs...Beckett is already a rockstar! We couldn't stop laughing at this picture.

Yes, Beckett is being weaned from the sedation drugs, but is also enjoying them. Everyday he gets better and better! Alex also played barber shop! He looks so handsome and smells so good!

They decided to take out the other two chest tubes! All that is left in Beckett's chest/abdomen area are the pacemaker wires, which they haven't needed to use. Gigi and Alex finally got to hold Beckett!

Tuesday, the day I had been dreading has finally came. Alex and I got up early and headed to the hospital, while my mom stayed to do laundry. I let Al hold Beckett as much as she wanted since she was leaving. I drove her to the airport. I hate saying good bye and watching my family go back home. It is the worst. Knowing how sad I was, my sister let me in on a surprise...she is coming back when my dad, older sister, and Grace come out! I always knew what an awesome aunt she was, but I also got to witness what an awesome nurse she is. Thank you for everything Alex! Love you! Meanwhile, back at the hospital my mom called to say that Beckett broke out in the hives. They think one of his immunosuppression medicines gave him the hives. So next time before they give it, they will also give him a dose of Benadryl. I decided to stop by our house on the way back to get some toys for Beckett. I cannot believe how long it has been since I have been home. I was nervous going back. I didn't know how I would emotionally feel. Right before I got home I got word that my Pappou had passed away. So my focus changed to hurry and grab what I needed to get back to my mom and Beckett. I felt so bad that my mom was alone. My grandpa was amazing! He passed his Greek culture on to all of us. Not only will I never jump out of a plane,but he did it at the age of 89! He had a great life. Love and Miss You Pappou! OPA!

Joe landed from Vegas and came right out to the hospital. We said good night to Beckett and headed back to RMH. We were all so tired.

I got woken up early Wednesday morning by Beckett's nurse. My heart was racing, but everything was ok! She wanted me to know that they moved Beckett back into his old room.  Today, was going to be a crazy day...we were going to see Beckett's old heart!  It's hard for me to believe I made a bad heart, yet alone about to hold it! At 12:00, Kara brought Beckett's broken heart to the room. It still had the connections in it from the mechanical heart. It was decompressed so it was smaller than it was in his chest. They had it sliced so you can open it and see inside. His heart walls were so thick leaving very little chambers causing a much lower cardiac output. They do test the heart to see if it will tell what went wrong, but results can take up to a month.

 After seeing the heart, Kara sat down with Joe and I to start teaching us all about post transplant. We are even tested over all the information. Beckett had a very cranky day. They think it is a combination of being hungry (he is getting a small amount of feeds via nasojejunal) and weaning him off the drugs. ENT came in to look at his vocal chords since he was intubated for awhile. Beckett's vocal chords look good and are both working properly! After that they brought speech and OT in to do a swallow test. Beckett was so agitated that they decided to come back tomorrow morning to redo it. OT looked at Beckett and noticed he was holding his hands in a tight fist. He has been doing that since he got sick. She showed me exercises to do with his hands to stretch them out. Joe and I have been doing them daily with Beckett. I stayed with Beckett last night. I am starting to feel like a hands on mom again! It is great! I have missed it so much and I realize how lucky we are for something that should have been a very much longer stay is now pretty short!

Today, Beckett woke up so happy! I got so many smiles. They are the best! At rounds, they talked about removing Beckett's PICC line. We noticed yesterday that his arm was super cold compared to his other arm, a little swollen, and it was looking mottled. They decided to keep it in and keep an eye on it. However, Dr. Fricker came in to look at it and he over ruled everyone and wanted it out.  I instantly got scared! He did not want to chance a clot to form. I was very happy with his decision. At rounds, they also said the DC word....Discharge!!! It has been a day I have been dreaming about, but when I heard it my heart dropped and I thought NO I'M NOT READY!!! It's weird but this place in a way has become home. I love seeing the nurses and doctors and I feel safe here. I feel like when I get home it will be like starting all over again. But I can do it! God sent me to nursing school for this!

PT came in this morning to do an assessment with Beckett. They didn't want to do too much since OT was coming in soon to repeat the swallow test. When OT came they had me hold him and he instantly fell asleep in my arms. So they decided to come back when he woke up. Our nurse had to step away for a few minutes, but knew a medicine was about to finish and it would alarm. She told us to hit the nurse call light and another nurse would come in to turn it off. Well, my mom hit a button, an alarm went off, and all of a sudden about 10 people came running into the room in a panic. My mom hit the code blue button on accident!!!! It was pretty embarrassing! OT came back and this time with someone new who held Beckett. They finally got Beckett to take 10 ml by bottle! It took awhile, but he did it! They say he is protecting his airway, which is good and just needed a little encouragement. It is going to take some practice to get used to having liquids in his mouth. It has been a month without liquids. Thanks to a generous friend I got to get a pedicure at a local spa. It was amazing to relax. I just closed my eyes and my mind actually rested. I did not think of anything. I needed that. I picked out a red nail polish called Bastille my heart. Yes, I have a new obsession with hearts. When I came back they have removed his pace maker wires and his PICC line. Beckett seemed so happy! OT came back and this time we tried breast feeding. I was super nervous because I was pretty upset when he wasn't taking the bottle. It is hard to see your child regress instead of moving forward. I do not like pumping as much and couldn't wait to go back to breastfeeding, but was scared he wouldn't want that anymore. By the fourth try he did it!!! I was crying yet again! We did a very small feed since he hasn't had much go into his stomach. So now every other feed with be from the breast.

Dr. Bleiweis, our hero, stopped by to see Beckett.

He cannot believe how amazing Beckett is doing. He even wanted to take Beckett's NJ (now NG) tube out, but the PA said to give it 24 more hours. He then said that Beckett has even beat the textbook odds. He is a true miracle. He went on saying how sick Beckett was, and how scared everyone was for him. It is still SO HARD to swallow those words. How could my baby have been so sick? He was smiling the day he went into respiratory distress....well doesn't matter now because I try to focus on the now and my baby now is doing great!  Sorry for the long post. My days go by quickly with snuggling, changing diapers, and feeding my adorable rockstar. When I look at my son and he smiles at me, I quickly thank everyone who has been with me on this journey because I never knew if I would see that smile again...

                                                                           Much Love,
                                                         Joe, Taylor, and our Rockstar Beckett
                                                     #teambeckett #futurerockstar #ourlilmiracle