Week Two

 03.12.2023 - Today was day 2 of a plasma transfusion, they were trying to treat a few autoimmune things in case that was the diagnosis. Today was also the day of visitors Coach B came to see how you were doing and say hi. Dr. and Coach M came to bring snacks and a turtle (fitting bc your recovery is going at a turtle pace) and see how you are doing. Mr. N came to see you before heading out of town. Coach L came and read Harry Potter; you won't let anyone else read to you. Coach C and Coach C stopped by for a few to say hello. The Teague's came to sit with you while I got away for a few minutes to get shower and change clothes at RMH. They also brought gifts and a donation from Cake, Hope & Love fundraiser. Aunt Nicole and I were able to get your hair washed and clean you up before resting for the night. 

03.13.2023 - We learned a lesson today in managing expectations as the doctors did a ramp study on your ECMO machine and thought you could come off ECMO. However, once you were down there your heart could not handle it and they put you back on ECMO but this time through the same leg so you could move one leg. This was a bit of a rough night, being up every 2 hours.

03.14.2023 - Today was day 3 of plasma treatments and moving the ECMO lines from groin to chest, centrally located so you could eventually move around the unit. Mrs. R came to sit with you while I was able to get out of the room for a few. The doctor did come in and let us know while moving the ECMO lines he was able to look at the heart muscles and determined it was not healing the way he wanted. 

03.15.2023 - Decorating your room made it so much more cheerful and showed everyone how many people are supporting you. A and Coach S brought down cards, signs and things from people at school. We were very active moving in the bed and tossing your legs all over the place.

03.16.2023 - Another day of managing expectations; I was hoping today would be the day for the ventilator to come off and you to breathe on your own. Although that was not the case, they will try again tomorrow. The feeding tube is not going well either, so they turned that off for a while today too. Today was the first day of being awake and starting to understand what happened. It was a bit overwhelming, and you started to cry; I think this is the first time you understood what was happening and that it was serious. You started looking around the room and I asked if you were looking for someone who was here, you nodded yes and as I started naming people you nodded yes to Coach B. He came and saw you and stay for a while until you were able to calm down a bit. 

03.17.2023 - Today you got a new Swan-Ganz catheterization (also called right heart catheterization or pulmonary artery catheterization) is the passing of a thin tube (catheter) into the right side of the heart and the arteries leading to the lungs to monitor the heart's function and blood flow and pressures in and around the heart. OT and PT came in today and got you sitting on the side of the bed and moving a bit. 

03.18.2023 - Nurse L washed your hair and you looked so much more peaceful. Your heart rate went a little out of rhythm and they had to shock it back to normal. It was very scary, but they gave you medicine and you went right to sleep. SP came in today, she cleaned your mouth, worked on verbalizing answers to basic questions and making your facial muscles work then you started on eating ice chips. OT and PT came back today, and you stood beside the bed twice! Mrs. B and A came to visit, and you were able to communicate with them. You told Mrs. B you were trying to get back to class. Shortly after everyone left your heart started beating irregularly again and you were shocked 3 more times. They gave you medicine to make you sleepy so you would not remember it. One of the cardiologists came in and let us know because of this you were not a candidate for the LVAD anymore and you would need a heart transplant. I know you were awake because we both started to cry, and I just wanted to climb into you bed and hug you.