Carlos's surgery is now on Monday 12 November.
Saying cheerio to Vivian on the floor on our discharge day, and our sons actually meeting for the first time after many weeks in adjacent rooms in the PICU
Carlos is 9 months old, was born with partial DiGeorge Syndrome, and was admitted to the PICU next door to Reuben on the same day, 12 July. The nurses would think of the boys as two peas in the pod, both having heart defects and Gtubes, and both syndromatic. Carlos was transferred to the floor after 6 weeks and since then has been on the cusp of discharge, but sadly one infection after another has delayed his homecoming and thus the decision was made to bring forward his cardio bypass. On Monday 12th, and after 2 postponements brought on by infection, sweet Carlos is scheduled to undergo his cardio bypass to fix multiple congenital heart defects. Please keep Carlos in your thoughts for Monday. Vivian has been a great on the ground support to me and as with Cassandra, I always admired her brave face and beaming smile. We have shared a great deal of ups and downs together, our boys intubated for weeks, the trials of infections and postponement. My heart repeatedly goes out to Vivian and Peter, who despite the impossibly long journey during this admission, manage a happy home life with their 2 year old daughter, whilst taking turns to spend the day with Carlos. I'm pleased to say that Dr Starnes who operated on Reuben will also be fixing Carlos's heart. I have the greatest empathy for what they will be going through tonight and tomorrow and yet have the greatest faith in Dr Starnes. I pray that they will find a peaceful place in their hearts to get them through the trauma of major surgery and that Carlos' health will dramatically improve after the surgery, allowing family life to continue for them, where it should do, together at home.
Dylan and Cassandra in the hospital garden on Halloween
Dylan is 8 months old and was born prematurely at 29 weeks, thereafter spending 6 months in the NICU. After posting happy photos of Cassandra and Dylan on Halloween, I'm sorry to say that Dylan is now back on the floor at Children's with a urinary tract infection. During this admission, he may also stay in for a colostomy bag reversal operation, and mum Cassandra is naturally worried as Dylan has already undergone 5 surgeries in his short life with many complications. I pray for a speedy recovery for Dylan and that Cassandra can continue to enjoy days at home with Dylan in the near future.
4 comments:
mega hugs
I will keep Carlos and Dylan in our thoughts and prayers.
Hugs,
Crystal and Eva
Every morning I begin my day with a meditation which always closes with a sending out of prayers and blessings to those finding themselves in need and those who cannot ask for themselves. To be human is to be so magnificently delicate, and I celebrate this humanity with great trepidation and awe every day. Mercy upon us all and most certainly prayers for the best of all possible outcomes, and sustaining peace and joy beyond all reason for Dylan, Carlos and their families - and of course, always you <3
Thoughts are with you Carlos and Dylan, I hope you have a smooth journey over this rough terrain.
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