Respiratory Distress
My 30 year old daughter has been struggling for every breath she takes for the past five days. Her neurologist who specializes in nmo, is out of the office. We live on an island, so medical care is extremely limited. I told the ER doctor to start her on high dose steroids because that’s protocol for her, it’s in her charts. It took a while, but he finally listened. She got admitted, but they don’t have any clue what to do for her. I’ve been watching her get worse and the doctor wants to give her morphine. No, that’s not what she needs. They say all her numbers and tests are normal. I’m trying to get them to airlift her to O’ahu, that’s where she was diagnosed this year and I think that’s her only chance. No one is agreeing that that’s what needs to be done.
Has anyone else had respiratory distress and what did you do to get through it?
I’m so sorry your daughter is going through this! How has she been doing? I can’t imagine how stressful this must be for you and your family. Thinking of you and sending positive thoughts, Julie (team member) It’s just me and her. We have a great support team of our community. She has an amazing medical team that unfortunately keeps growing. I never knew one person could have so many doctors.
She’s so tired all the time and struggling to breathe. She spends most of her time in bed which is extremely difficult for her. Before her diagnosis in January, she was training to be in the Ironman World Championship this year. Now it’s difficult to walk, much less exercise and do the things she loves.
Her attitude has always been so amazing throughout this entire journey.
Mahalo nui for thinking of us. We have been finding a new family in the NMO community, it’s so helpful for her meeting other people with her condition and knowing that she’s not alone in this.my heart goes out to you both! I’m glad our community has been helpful for her. Please know we are here to support both of you, don’t hesitate to reach out. Sending continued positive thoughts🩷. -Julie (team member)
