Scary testing
Posted May 19, 2010 8:49am
Again, sorry it's been so long. For those of you that didn't know Brian had to be notified and sent home via Red-Cross back in the beginning of April. Kaden needed his daddy as his vital signs continued to get worse. This however was good timing. Brian was going to be medically discharged anyway and ended up in surgery himself right after he got home. He is doing better now and we are awaiting test results for Brian.
As for Kaden, we continue to see battles being fought along with challenges ahead. Kaden is going up to Denver today for a high resolution CT scan of his lungs, a sinus lavage and CT, and worst of all a bronchoscopy were they will physically go down into is lungs and sample the tissue to see what could possibly be going on with his lungs. His oxygen requirement is still high for his age and continues to stay that way. Although he is able to compensate for some things, other organs then become compromised. Our new cardiologist is not pleased with the extreme irregularities of his heart rate and tone. He explained yet again that there is no cure for Kaden's disease, just some treatments for the symptoms. Kaden is still having apnea and is not gaining weight. His blood pressure is still quite irregular as well as his body temperature. He is very hyperactive most days and the docs feel like he compensates a lot. This test today will show us how damaged his lungs are and hopefully will explain why. If his lungs are anything like his heart it's not so much that there is a structural problem, but more of a brain issue sending the wrong signals at the wrong time. Kaden remains on high doses of potent medications just to be somewhat "normal". We asked in April what his prognosis is and found ourselves frustrated to again hear 'We really don't know at this time. Kaden is an anomaly and all we can do is play the waiting game." He was re-certified for the hospice program and will continue to get private duty nursing. Kaden's newest achievements are as follows; He's speaking more everyday. He is continuing to show brilliance and motivation. He is trying more new textures and foods even if he refuses to eat them after he tries, but at least he's trying them. He is now drinking sips of thickened water out of his sippy cup and is even trying to potty train. He is displaying a phenomenon were he actually changes his position to regulate his own heart rate and blood pressure to the best of his ability. These are all signs that he is not giving up and neither are we. He will grow big and strong...I know it. We just need to keep him as stable as we can until then. I will try to update everyone on how today goes. Please keep him in your prayers today... he is so fragile and gets dependent on the ventilator quickly. Love to all!
As for Kaden, we continue to see battles being fought along with challenges ahead. Kaden is going up to Denver today for a high resolution CT scan of his lungs, a sinus lavage and CT, and worst of all a bronchoscopy were they will physically go down into is lungs and sample the tissue to see what could possibly be going on with his lungs. His oxygen requirement is still high for his age and continues to stay that way. Although he is able to compensate for some things, other organs then become compromised. Our new cardiologist is not pleased with the extreme irregularities of his heart rate and tone. He explained yet again that there is no cure for Kaden's disease, just some treatments for the symptoms. Kaden is still having apnea and is not gaining weight. His blood pressure is still quite irregular as well as his body temperature. He is very hyperactive most days and the docs feel like he compensates a lot. This test today will show us how damaged his lungs are and hopefully will explain why. If his lungs are anything like his heart it's not so much that there is a structural problem, but more of a brain issue sending the wrong signals at the wrong time. Kaden remains on high doses of potent medications just to be somewhat "normal". We asked in April what his prognosis is and found ourselves frustrated to again hear 'We really don't know at this time. Kaden is an anomaly and all we can do is play the waiting game." He was re-certified for the hospice program and will continue to get private duty nursing. Kaden's newest achievements are as follows; He's speaking more everyday. He is continuing to show brilliance and motivation. He is trying more new textures and foods even if he refuses to eat them after he tries, but at least he's trying them. He is now drinking sips of thickened water out of his sippy cup and is even trying to potty train. He is displaying a phenomenon were he actually changes his position to regulate his own heart rate and blood pressure to the best of his ability. These are all signs that he is not giving up and neither are we. He will grow big and strong...I know it. We just need to keep him as stable as we can until then. I will try to update everyone on how today goes. Please keep him in your prayers today... he is so fragile and gets dependent on the ventilator quickly. Love to all!
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