The following is an update and timeline on Ryan who received the gift a donor lungs on September 27th, 2018.
Posted 9/27/18 @ 1153am
Please keep Ryan, his family, and the donor’s family in your thoughts. Last night, Ryan received the call for new lungs and was admitted into the hospital. Surgery started this morning at 11:28am and will last between 8-10 hours. On this day last month, we went through the dry run and we are excited to announce that it is 100% a go!!! We are so thankful for our donor family and those that choose to become organ donors. Please keep the family that is grieving close in your thoughts today and going forward.
Posted 9/27/18 @ 813pm
Ryan officially has been given the gift of a new lease on life.
Surgery ended at approximately 6:30 pm. The surgeon said everything went as planned and there were no unforeseen complications.
We are so thankful for our family, loved ones, our transplant team, our CF team, our precious donor family and everyone who played a part in making this day possible.
Please continue to hold the donor family in your hearts tonight and give Ryan strength on his road to recovery.
Posted 9/28/18 @ 949am
We made it to the 24 hour post op mark! Ryan is alert, responding, and communicating with hand signals and writing on a white board. He understands who everyone is and is aware of what is going on. He continues to make overall positive progress.
We cannot thank everyone enough for all the support!
Posted 9/30/18 @ 947am
Breathing tube is out!!!!
Ryan is doing really well. We got to hear his voice for the first time and it was overwhelming. Ryan also was able to speak to his daughter for the first time who still hasn’t been able to see him. The doctor’s agreed to let her visit later today if he continues to do well. Nothing but positivity in the air.
Posted 9/30/18 @ 841pm
So many positives today. We are so grateful to have so many great reports. That is not to say we don’t have ups and downs throughout the day with a variety of things, including pain. At the end of the day Ryan continues to push forward, make progress and is in good spirits. That is what we choose to focus on.
Breathing Tube Out
Brushed his own teeth
Walked from Bed to Chair
Sat in Chair for a significant period of time
Ate Chicken Broth
………Drum Roll………
Reunited with his princess
Once again we cannot tell everyone thank you enough. We appreciate everyone keeping us in their hearts and minds. We couldn’t do it without you.
Posted 10/2/18 @ 346pm
Guess who is discharged out of the ICU!!! Please celebrate this success with us!!!
Ryan still has a long road to recovery and there are constant struggles and hurdles to overcome but he is meeting milestones left and right.
Ryan will still be in the hospital for some time and visitation is still very limited at this time.
We are greatly going to miss our ICU care team and especially all the ICU nurses who quickly became our second family. Thank you for being there for us and taking such great care of Ryan.
Posted 10/3/18 @ 835pm
Ryan completed his 1st walk today with physical therapy and then did a bonus walk later in the day. Physical therapy is a huge piece to helping us reach so many other goals and overcome other challenges we are facing.
Posted 10/6/18 @ 1016pm
Ryan is still recovering in the hospital and doing great overall. He continues to walk more and more everyday and has been off any oxygen support for 3 days now!!!
What does our weekend look like?!?! HOMEWORK, HOMEWORK, HOMEWORK
The transplant team challenged us to read the transplant handbook and memorize all of his meds by name, dosage and reason for taking them. To give you an idea of the task we are facing…he is currently on 24 different meds! Actually the amount of meds are not new to us. Having CF you are accustomed to laughing at the med list space that is provided on most intake forms. What is different is 95% of these meds are completely new for Ryan and have 8738397 letters. We are doing pretty good so far on our task and the nurses are quizzing us each time they come in.
God bless all of you!!!!!!!! Prayers for all with much love from all of us! ????????????????