Saturday, August 23, 2014

Saturday's update. Sorry for the delay

Jude had a fairly decent day. His coloring was terrible..............and I do mean terrible. I hesitated posted this picture but the information that follows it is reassuring. I just wanted to demonstrate how concerning his color was. Keep in mind he was sleeping.

Jude napped for over three hours today. This is his first full day with the Clonidine. I have noticed that Jude started to have two full attacks but something stopped them from proceeding (clonidine?). His oxygen would drop but once we administered some rescue oxygen he soon recovered.........that's good news. His heart rate would spike but then quickly leveled. His tone was bad but not horrible. However his blood pressure is low, his eyes are doing this strange flickering and rolling back, and his color is terrible.

We feel comfortable keeping Jude at home because his stats are good. I think that's another score for the pulse ox machine. If it weren't for the machine our nurse said he would have called 911 today. So maybe the Clonidine is actually starting to help! I am interested in knowing side effects that other parents have seen. I am guessing it's a careful balance between the possible effects and the possible recovery. I am breathing a little easier with hesitation. Does that make sense?

I did notice Jude's spinal fluid leak is bulging again on the right side and I wonder if that will ever resolve. I also noticed another situation tonight. I remember when Jude was a baby we would spend over two hours trying to get him to take one bottle of formula. We thought it was just an issue with the formula, but we finally figured out that it was Jude's body refusing to do something that could be harmful. Eating by mouth could be harmful because Jude aspirated on every form of liquid. So he would turn his head from side to side refusing the bottle and we became SO frustrated. Today I held Jude like I normally do in our little spot on the couch while we watched TV. He would begin to arch back, gasp a little, and turn to the right. He has been doing this since the surgery, but I always shrugged it off as involuntary movements. Today I realized this might be Jude's body's way of repositioning itself to get the most oxygen possible and to possible lower his blood pressure. It's truly AMAZING how resourceful the body is. He wants to be held but his body does what he needs to in order to get what it needs to in order to thrive.

1 comment:

Reagan Leigh said...

Reagan did the same thing with her bottle, and along with vomiting was a big reason for her finally getting the g-tube. She takes clonidine to help her sleep and also to help calm her down on her crazy bad days. Other than lower her blood pressure, we haven't noticed any concerning side effects from it (although at times she does have a paradoxical reaction from it and instead of calming down, she gets more crazy...but Lortab sometimes does the same thing)!