Tuesday, October 8, 2013

Here we go again.

After a frustrating night in the local ER and not wanting to go back to the children's ER, I start Tuesday by emailing our doctors to see if we could get his second dose of antibiotic a little early so that we could go to the clinic. They agreed and told us to come in around 2. Wonderful. I left work at noon so I could go home and get Logan and get back into the city by 2.  This fever trip was exactly what I would want. In the clinic, with people that Logan knows, and who know him.  People who know EXACTLY what to do because it is the only thing they do all day.  Best part of this trip was that, not only did Logan wear his mask willingly, he actually put it on himself without being told. It was amazing!  

While we were at the clinic, our doctors found us to review his MRI results from Monday. The good news is that the tumors in the hypothalamus and optic nerve appear to have shrunk a bit. The bad news, a new tumor, that was first evident on the previous MRI in his brainstem, has grown.  This introduces the complicated dilemma of, do we change treatment to find a drug that will be effective on all the tumors, or do we continue with one that seems to be working on at least some of them? This decision is further complicated by the fact that he already appears to be effected by the new brain stem tumor. In the past few days we have noticed Logan's right eye lid drooping. After letting his doctors know, they indicated that this is a definite sign that the tumor is effecting him. 

We don't yet have all the pieces of the puzzle. Thursday, we will see the neuro-ophthalmologist to see what his vision is doing and immediately followed by another neurologist who will give us more definitive information about what the next steps will be. 

For now, we have to figure out the silliness with this ridiculous fever. After getting our 2nd dose of antibiotic and leaving the clinic with a low grade temp,  we arrived home Tuesday evening with a fever of 104.  In addition to the fever, Logan was now coughing.  We gave some Tylenol which helped a bit, but still with a decent fever and now cough, I called, yet again, to see what we should do. Long story short, we were back in the ER for the 4th time in 36 hours. 

During this visit, Logan got his blood checked (low but not dangerous), IV fluids, and another X-ray which finally indicated pneumonia. At midnight, after 4 hours in the ER, they told me that they wanted to admit him to treat the pneumonia.  A short while later, they reconsidered and thought maybe they wouldn't admit him. While they worked to figure out what ever the hell they wanted to do, Logan got 2 additional antibiotics. Long story short (is it too late for that?) by 3AM we were on our way home with our new arsinal of antibiotics to treat at home. 

After another day home to rest and drug up, Logan seems to be doing much better. Fever is in check and hopefully the antibiotics are doing what they need to do to wipe out the pneumonia.  Hoping we can get some promising information from his doctors tomorrow.

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