Monday, August 18, 2014

Insert multiple curse words

Jude had a terrible "episode" again tonight. He was red faced, toned out, breathing heavy, very high heart rate, and just not well. For the first time I saw Mike get very angry and I was ashamed that I felt a bit vindicated. I feel like I keep screaming that things are not right. I know he is so very concerned about Jude too, but I just felt like we completely related to the episode and that we were on the same level.  

Mike said he felt like if he had been properly informed about the possible side effects we never would have proceeded with this pump. Something is NOT right. Jude cannot keep up at this pace I know that the specialists believe that as long as Jude's heart rate and oxygen level recover then he is heading in the right direction. Well NO shit Sherlock (excuse the cursing) aren't we all heading in the right direction if our heart rate and oxygen levels stay in the appropriate ranges. I mean it only constitutes an emergency if the levels continue to decrease.......correct? If they don't increase then we call 911 and they admit there was an issue.

So do we continue on this level hoping that we find the therapeutic dose of Baclofen or do we finally admit that we have far exceeded the level of Artane he had and there is a legitimate issue. I know that this mom has about reached her limit. I tend to fly off the handle sometimes so I am reeling myself back in before making any sudden movements.

Jude has had his SECOND dose of Valium today. I won't mention the oral Baclofen he had. He is finally resting and we will soon put him to bed with additional sedatives.

I don't want Jude living off sedatives. I really just want our life back. Sometimes I wonder about what we said at the beginning of our journey so many years ago. Sometimes we so want our children normal that we make decisions without thinking of the consequences.. Did we try to reach a pain free level at an ultimate cost? I feel mike we are far exceeding Jude's normal "bad" days. 

Ps. He just threw up

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