Thursday, January 5, 2017

And Just Like That, She Returns

Hello strangers! Long time, no blog.

It's been a crazy roller coaster around our home and blogging was the last thing I had the time for. I think once you read what we have been through and dealing with, you will agree. I also hope you will return to reading as I have a lot to share.

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Many moons ago ... OK, less dramatic. A few months ago our older son woke up feeling horrible. He was lethargic, had a high fever, and just felt horrible. I watched him for the day, hydrated him, and was getting worried. This didn't look like the flu or a cold. The next day we took him to an urgent care center. He wasn't sure what it was but suggested antibiotics. I am not one to jump on meds, but this looked very off and I agreed. Within 12 hours his temp went away and some of his energy returned. Yea doctor!

The next day he woke up telling us his vision wasn't right. He couldn't see right. We waited a bit thinking maybe he had some allergies or such as nothing else was bothering him. It not only didn't go away, it got worse. He told me he couldn't see me with one of his eyes, that he couldn't see anything. I packed him up and off to his pediatrician we went.

He told me he felt this was a freakish reaction to a mold he was allergic to (my son was allergic to this mold, pretty highly so) as this specific strain was very high right now and very prominent. He gave us some natural helps and sent us on our way. He told me to give it a solid week and call him back so we could regroup. A few days later, Friday, my son's vision was gone in that eye. I called our pediatrician and said I wanted to verify this was normal and expected. He told me we should see our optometrist immediately. I called his office, got an appointment for "as soon as you can get here".

We showed up and had the longest appointment of our lives that turned into a 10 hour ordeal. He looked at my son's eyes and said yes, his vision was nearly gone in his left eye. He did tests I have never seen before. He told us to go across the street to the hospital, he was calling orders over for a stat MRI and blood work. He wanted to make sure there wasn't a tumor pressing on his nerve or such and wanted to check for some specific infections.

The MRI was not stat. Sigh. It was marked stat, but the lovely woman at the hospital told me, in a not so polite voice, "stat doesn't mean you go first, it means you go after everyone else has their appointment but don't have to wait a week to get it". Ummm. Whatever, I was exhausted and worried at this point. We finally had the MRI and were called to the ER after our labs were pulled.

The ER doctor wanted to look at him and wanted more labs pulled. We finally left at 10pm wiped out.

We waited a few days for the labs (they were stat as well and were supposed to be back the next day, it took 7). During that time my son's eye got worse, severe pain began in his right eye. Our optometrist was done waiting and sent us to a pediatric opthamologist at the children's hospital. We drove down that day, had our appointment, and she told us this was well above her level of expertise and she was calling the Neuro Opthamologist in the larger children's hospital (the same hospital, just the main one) and we were to head over there immediately. OK, fine, off we go.

During our visit with the Neuro Opthamologist, the labs came back and our optometrist called with those results. Our son had Rocky Mountain Spotted Fever AND Bartonella. All of this was taking his vision from him. We were also told, left untreated, Rocky Mountain Spotted Fever could be fatal. We started on a month of antibiotics that day. We also had weekly appointments with this Neuro Opthamologist. I was so confused as we hadn't seen a tick on our son at all. But he told us often they do their thing and fall off and are never seen by the patient or his family.

We finished the month's worth of antibiotics with very little effect on our son's vision. We were supposed to see great things. So, our doctor took a chance and started him on steroids. It's a mixed bag with those. There can be issues and it's not proven that they do much for these issues, but we were trying so hard to get his vision back. Thankfully they started to work. His vision began to return. Not so thankfully, he had side effects pretty quickly and we had to pull them.

During all of this his immune system was shot as it had been attacked pretty aggressively by these two infections, then add in antibiotics and steroids and it was a wonder he didn't catch everything in sight. We had to work on boosting that up to help him not catch every winter cold that came before him.

It's been months since this all started and we are still dealing with it. Our son's vision is a lot better, but not where it was. We don't know if he will ever get it back fully. But, at this point, if it got no better we would be OK because it would simply mean a pair of glasses. That's a far cry from totally blind except some ability to see very bright light.

Since that turned into an novel, quite unexpectedly, I will leave you here. But look for my coming posts to see what ELSE has been happening in our home. I think it might make you smile.


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