I created this blog so that way family and friends have an easier way to read up on the happenings of Quinn. So many people have touched our lives in so many ways throughout this journey, teachers, nurses, family, friends, even some friends we have never met in person. Thank you for all the prayers and support.
So, 2009 was Quinn's super healthy year. Although I kinda still had a feeling that things weren't quite right, I felt that Quinn was getting better and doing very well and by the end of the year, we felt that it was safe enough to continue to watch her thrive and slowly wean her from her medications, oxygen, and g-tube. Unfortunately, this was too much for Quinn's body and during our g-tube wean, Quinn started having grand-mal seizures in January. She had a series of multiple seizures in a matter of 3 days and Quinn was taken to the hospital by ambulance due to the seizures. There, she continued to seize and was given IV anti-convulsants every six hours and she was diagnosed with another case of pneumonia and an Ileus in her bowels. (which is a fancy word for very slow motility) She was started on IV medications and hospitalized for only three days. She was taken to a different children's hospital than our normal one. Quinn was very sick. She had to have a critical care nurse by her bedside, she could not sit up on her own or walk and was dependent on oxygen. by the time she was discharged, she was walking a little bit with support. When I talked to the neurologist about how i felt that Quinn had a lot of the symptoms of Mitochondrial Myopathy, I was shot down, AGAIN telling me that my daughter was too healthy to have Mito and that if she did have it, she would have never gotten better after she was in the NICU. Funny, Quinn has NOT gotten better since the NICU. She also told me that Quinn would regress with every sickness and would take months, not days to get skills back. She said that looking at her records, Quinn has been chronically sick enough that she would expect Quinn to be sicker by now. So... we left again, loosing faith even more that we would ever get to the bottom of what is going on with Quinn.
Interestingly enough, we had a follow up with her metabolic doctors and they told me that Quinn had a partial mutation of a gene, suggesting that she has a form of Mito called MNGIE. As rare as mito is, MNGIE is the MOST rare form. So she had some more blood drawn to confirm the diagnosis. the doctor seemed pretty confident that this is what we are dealing with as all her symptoms seem to support the diagnosis to a T.
From January to today, we have had two follow ups with Quinn's GI doctor due to her increasingly difficult stomach problems. Quinn's stomach was bloating up terribly, she looked very pale, she was very tired, she had dark circles under her eyes. Though she was gaining weight, she wasn't doing well. The result: Quinn is no longer able to digest table food. She does not have the energy to do so, even on two motility medications and so now she is on a 24/hour continuous g-tube feeding. She also continued to have seizures and her oxygen requirements continued to become more and more frequent and now, Quinn is on oxygen 24/7. Quinn has not been the same since she was sick in January. Her tone is lower, she can get more tired and she can become very lethargic, particularly when I try to feed her regular food or if i try to increase her feeding pump rate. Since Quinn was placed on the continuous feedings and the oxygen, and her seizure medications have been increased, she is doing much better.
She has had follow ups with pulmonary, GI and metabolic. And coming up she has follow ups with neurology, and opthalmology. What is the funniest to me about all this right now is that, all her doctors are telling me that she definitely seems like a Mito kid and now, she has a clinical diagnosis if Mitochondrial Myopathy.
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