During our last month here at Lucille Packard I met a very special family. Sweet little Savannah is a 17 month old with heart and lung disease. Her parents, Mike and Denie have been so dedicated to their precious baby. They have lived here at hospital with her since January day in and day out. She had been listed for a heart-lung transplant since August, but as she got sicker recently she was put at a hold status for transplant. She was too sick to go through surgery. She fought a long and hard fight, but yesterday her body decided it was time to return to our Father in Heaven. Please pray for her family at this time as they mourn their loss.
It's days like yesterday that make me all the more appreciate every moment I have with Miracle Mason, as well as each one of my kiddos! We need to LIVE IN THE MOMENT and appreciate our loved ones while we have them here with us!!! I am also grateful to truly BELIEVE and KNOW that families can be together forever.
How is Mason?
Mason is doing well except for his "ICU psychosis or delirium" . He gets extremely agitated when anyone comes in his room right now, but at least last night he slept a total of 7 hours. Over the last several days the docs have tried different meds to help him settle down and sleep. Last night we finally found one that helped.
Last Friday Mason's white blood cell count was higher than normal so they drew cultures and started him IV antibiotics. Today the team got the results showing a bacterial infection in his IJ line (This is the large catheter line in his neck that was placed for the plasmapheresis treatments). The good news is that the infection was treated early on so it never caused Mason to be sick.
The IJ line was left in until a second DSA (antibody level test) was drawn to make sure there was not a significant rebound of his antibody levels that would require more plasmapheresis. This level was drawn today with results hopefully by tomorrow night. But, with the blood cultures showing an infection in this line the doctors decided not to wait any longer and had the line removed. Mason has to feel better with it out! It was a huge Iv catheter!
Then Mason will go for a CATH and BIOPSY 3 on Thursday morning. We hope and pray that his rejection does not rebound back up!! He will also have a port placed in his chest which can be used for blood draws and IV infusions. We will go home with this. The PICC line he got the week after transplant, which he was meant to go home with, quit working for blood draws in less than a week and was removed. Mason's poor veins have been used one too many times!!!
The plan now is too stay in the CVICU until Thursday. Then he will not have any lines in (right now he still has an ART line in his wrist being used for blood draws) and there shouldn't be any problem getting him an isolated room on 3 West. The concern last Friday was placing him in an isolated room but where a nurse could check on him very frequently because of his ART line. In the end they said he would need to be in their large room that has 4 patients and 2 nurses to be monitored well enough, but because he is a transplant he needs to be isolated. It's really just too confusing, but at least we will get up their before the weekend.
The nurses and I take Mason on several stroller walks a day to help cheer him up. We usually just take laps around the second floor and then out on a patio for a few minutes, but it definitely helps Mason's mood!! The nurses here are wonderful (almost as wonderful as Primary's !!!) and really try to help keep these hospitalized kiddos happy. They really have helped us feel very welcomed and loved while we've been here.
It's time to close my eyes and get some rest, because Mason just fell asleep! Yay! I'll update soon with anything new.
PS....Mason's Night of Celebration Fundraiser will be in June in Alpine Utah. I will post with details as soon as I get them.