Dear Family and Friends,
Getting an EKG yesterday
Just a quick update for those who have been asking after Phoenix and for family so far away in Australia...
Phoenix is entering her second week in Intensive Care at Primary Children's Hospital in Salt Lake City today.
She has RSV - Respiratory Syncytial Virus - this is a major cause of respiratory illness in young children. RSV causes infection of the lungs and breathing passages. In adults, it may only produce symptoms of a common cold, such as a stuffy or runny nose, sore throat, mild headache, cough, fever, and a general feeling of being ill (as Candice well knows, having caught it from Phoenix). But RSV infections can lead to other more serious illnesses in premature babies and kids with diseases that affect the lungs, heart, or immune system, like Phoenix and Isis. It quite literally almost killed Isis when he was Phoenix's age.
Phoenix is entering her second week in Intensive Care at Primary Children's Hospital in Salt Lake City today.
She has RSV - Respiratory Syncytial Virus - this is a major cause of respiratory illness in young children. RSV causes infection of the lungs and breathing passages. In adults, it may only produce symptoms of a common cold, such as a stuffy or runny nose, sore throat, mild headache, cough, fever, and a general feeling of being ill (as Candice well knows, having caught it from Phoenix). But RSV infections can lead to other more serious illnesses in premature babies and kids with diseases that affect the lungs, heart, or immune system, like Phoenix and Isis. It quite literally almost killed Isis when he was Phoenix's age.
"Dummy Mummy!!"
RSV is highly contagious, and can be spread through droplets containing the virus when a person coughs or sneezes. The virus can also live on surfaces such as countertops or doorknobs, and on hands and clothing. RSV can be easily spread when a person touches an object or surface contaminated with the virus. The infection can spread rapidly through schools and child-care centers. Infants often get it when older kids carry the virus home from school and pass it to them. Almost all kids are infected with RSV at least once by the time they are 2 years old.
It is pretty difficult to shield the children perfectly from respiratory virus's, because many are so easy to catch.
With breathing support, Phoenix is more alert
Phoenix has bronchiolitis and pneumonia. She was admitted with respiratory failure. Her oxygen levels were dangerously low when I brought her here and her carbon dioxide and pH were completely out of whack. Her body was beginning to shut down - her heart was working overtime at 180+ beats per minute and she was almost completely unresponsive.
Phoenix is on full respiratory support that pushes air and oxygen into her lungs - one step down from a ventilator. A bi-pap with oxygen when she sleeps or gets tired, and high-flow prongs with oxygen and air while she is awake - the prongs are progress in the right direction and provide a little less support. has made progress in baby steps, but suffered a set back yesterday when a technician accidently bumped her breathing machine off. Within a few minutes, her oxygen levels desaturated to 51%, she turned blue and grew very lethargic very quickly. It took her all night to recover from that. She will be in here for a while yet.
Phoenix is on full respiratory support that pushes air and oxygen into her lungs - one step down from a ventilator. A bi-pap with oxygen when she sleeps or gets tired, and high-flow prongs with oxygen and air while she is awake - the prongs are progress in the right direction and provide a little less support. has made progress in baby steps, but suffered a set back yesterday when a technician accidently bumped her breathing machine off. Within a few minutes, her oxygen levels desaturated to 51%, she turned blue and grew very lethargic very quickly. It took her all night to recover from that. She will be in here for a while yet.
I was able to talk to the Christensens doctor two days ago - the Christensens are the family who had all four of their children with RSMD. Their doctor has had 27 years experience with this family and Rigid Spine now and it was nice to chat with him. He recommended that we keep an eye on their hearts, particularly the right side that gives blood to the lungs. So Phoenix had an EKG and Echo Cardiogram yesterday.
This morning we discovered that her heart is enlarged, particularly the right side and parts of the aorta, from working so hard helping her breathe for so long. Her increased scoliosis has obviously been having more of an impact on her breathing than we realized. We have to keep a close eye on this. This news was surprising to me because none of the research we had read ever suggested heart difficulties with RSMD. Other muscular dystrophies certainly do... but anyways, it was a bit of a surprise to learn this morning. The last cardiology appointment for the children showed nothing out of the ordinary, so yes, I was surprised by these results. Mind you, Phoenix's scoliosis hadn't begun at their last cardiology appointment.
"I don't like the cough assist machine anymore. I don't like suctioning either.... just let me watch The Little Mermaid and leave me be..."
Phoenix's scoliosis began when she was one. I was sooooo sad the day I noticed it, because she was SO SO SO little and the curve was very noticable. Isis' scoliosis began at four years of age and I guess I was expecting something similar with Phoenix. Phoenix's is already so much more severe than Isis' and I see spinal surgery in the very near future for her... Which makes me very nervous. Surgery has a high mortality rate, especially for little ones with very little blood to lose and muscular dystrophy.
So yes, I get very sad and very worried, even though it looks like I am fine on the outside - I am usually not :) Phoenix has reacted very badly to both anesthetics she has had in the past and I have always quietly thought that we would lose her during spinal surgery. I never imagine she would need surgery so young.
Nick and his family are looking after Isis at home in Logan, to hopefully prevent him catching RSV. He misses Phoenix and me. I am here by Phoenix's bedside morning and night.
I am sorry my news isn't super-good. But I wanted to keep you up to date, especially my family in Australia who can't be here with us now. I miss you guys so much and I love you xoxox
