We all have problems but when we see others who have something more intense going on in their lives, it makes us realize that our problems arent that bad. I am asking for EVERYONE to send a prayer to a coach friend of mine and her family. My heart is absolutely breaking for her and her family. I hate when bad things happen to anyone but it hurts even more when it is a child. Please pray for little Kyan! Here is the recent update from her about her son: :::I apologize in advance if this is scattered...I;m exhausted tonight::: There were extreme highs and lows today with Kyans stay in the ICU. He was able to start his receiving food through his feeding tube and his blood pressure and oxygen remained steady. Kyans Optometrist came down and since his corneas have scratches on them from his lesions under his eyelids, they decided the best plan of action was to insert special made contacts onto each of his eyes that would prevent more scratches and also help to heal the eyes. They will dissolve over time. Those contacts were placed this morning. Unfortunately, his chest xrays came back with what had hope NOT to see...but they showed that he had developed Pneumonia. So treatment for that has begun. He is still sedated, and occasionally has moments where he stirs, moves or even sits up...which is normal but really scares mom! He is on a variety of medications and antibiotics that his ICU nurse spends her shifts making sure everything is started an stopped and timed perfectly. Angel is her name and she truly has become Kyans Angel...AND they share the same birthday. It was meant to be. Kyans blisters and lesions continue to spread not only externally, but internally as well. His mouth is suctioned every few minutes due to blood filling from the lesions on his lips, inside his mouth and throat starting to open. Internally, his body is at war and its been a true juggling act to keep his levels in check, his body hydrated, and his temperature down (which was hoovering around 105 for 3 days). The Burn Unit has fitted him with bandages as well as a special underlayer that helps to soothe, cool, and keep his skin moist. The banagaes ar enot changed daily, but instead he is watered every 4 hours, where a team of nurses come in and gently pour water on all areas of the bandages which is then quickly absorbed. Hi blisters have now reaches every area of his body and the focus for the time being is pain management. Vu has been the most AMAZING FATHER possible. Truly a SUPER DAD by translating medical jargon for mom and questioning procedures, labs, and plan of action when needed. I wont go into detail, but he has SAVED Kyan. Its a hard line to walk from being a father of the patient and trying hard NOT to overstep the professional boundaries of other physicians. I am in awe of his continued focus to digest all the information and be a part of every procedure from the sidelines. I on the other hand have to stand back. Kyans physical condition is now so severe that there is not a single area on his body (including hand or even forehead) that I can touch that doesnt sloth off skin. There is blood, wires, tubes, swollen limbs an unrecognizable little 6 year old underneath. You must be gowned, gloved and masked in his room at all times and I have been in a constant state of tears and numbness. Its the most helpless feeling imaginable. Steven Johnsons Syndrome will get worse before it gets better. Every hour I hope to see a STOP to its progression, but it continues to spread relentlessly causing a more severe domino effect in ALL areas. He has an AMAZING professional Team by his side... Critical Care, Disease, Respiratory, Eye, Derm, Occupationa Therapy, etc...his room has been a revolving door of physicians, residents, nurses, and family. All who are there to HELP. This evening a staff member in the ICU referred us to the Ronald McDonald House and we were approved for a room in their loving facility right next to the hospital. It comes with an outside garden, security, and meals cooked and delivered by various local volunteer groups and churches. I broke down in tears when we saw the facility...all filled with other families battling their own health wars. Its an unspoken family camaraderie unlike any other when you say hi or pass in the hall because you know there is PAIN behind the smiles. The days are short because of the flurry of activity, LIFE CHANGING decisions that need to be made, and emotions. We cannot thank all of our family for taking our 4 other children without hesitation, friends for offering unwavering support, meals, and our prayer warriors. Kyan WILL get through this. We WILL get through this. Its a long journey of recovery ahead...but we WILL make it together! xoxo Marissa and Vu
Posted on: Sun, 04 Jan 2015 01:09:16 +0000
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