This blog is about Jackson Culley. It is about his life with Leigh's, a mitochondrial disease. It is about how we, as a family, work through the everyday life stuff and cope with his terminal illness. Why call the blog The Freckled Toe? I call it that in honor of Jackson. He has a dark brown freckle smack dab on his right big toe!
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Monday, June 13, 2011
Hospital again..
I took Jackson to Dr. Frizzell on Friday. The night before he had dropped his O2 levels several times in the night. He is also having alot of trouble getting over thie respitory virus. Dr. Frizzell had left for the day and we saw Dr.Livingston. He had spoken withDr. Frizzell about Jackson and I think they had predetermined to admit Jackson. Jackson has not dropped his sats while being here. We have been getting vest therapy, albuterol and his Qvar. They have been monitoring his temp and it has been anywhere from normal to 100.6. Jackson has been getting Tylenol for the fevers. There are two theories as to why Jackson is dropping his O2 levels at night and not the day. Neuro theory is that Jackson is having seizure activity that is inhibiting his breathing. Today, Jackson had an eeg and a Upper GI study. The eeg revealed that Jackson had 5 myoclonic seizures and some epileptic events. To help control these events better they are increasing his Zonegran. The Sleep study results were inconclusive as to whether there is apnea. He only dropped his sats to 92 during the study. That's all they told me today. It just didn't gie us the answers I wanted. I think I will ask for a copy and pick it apart at home later. The second theory, is from Pulmonolgy is that Jackson is aspirating his stomach contents while sleeping. He is gettins so relaxed during sleep that he is loosing what muscle tone he does have while awake and the stomach contents are reflux. During his upper Gi study he did reflux. So now I am waiting to hear the plan from Pulmo. Jackson has a salvia gram ordered for tomorrow. They ordered this test to see how Jackson is managing his saliva. I will post the results and the plan from pulmo tomorrow. I am glad that we've gotten some answers today. I am also glad that there was eeg results that showed seizures. I have been worried that the O2 dropping was a progression in the disease. We will see if the increase in meds helps. We really won't know if it is working until the meds get in his system for a while, at least a few weeks. That's all I know for now....Thanks for checking in on Jack.
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