May day

Jude's night only got worse yesterday. Jude could not keep his oxygen levels up last night. I would suction him, clear him, and it would raise for about 2 minutes then fall again. At one point we had him on 10 liters of oxygen. Jude was up ALL night long doing this and I had to basically stand by his bedside. I didn't get any sleep at all before going to work. I can handle getting a few hours but today I am flat out exhausted.

Adding insult to injury at about 5 am his feed line started beeping and his feeding tube was clogged again. Mike and I literally just stood on the side of the bed trying to unclog the tube in tears. I think we both just hit a wall early this morning. My heart was fluttering (still is) and my chest hurt. I thought this is it...MAY DAY MAY DAY we are going DOWN! I cried, Mike yelled, and everything went to hell in a hand basket. Poor Jude just laid there and would eeek out a smile every once in awhile. He would get stressed from the lack of oxygen and his tone. Jude must of thought his parents went off the deep end during this debacle.

Mike wanted to just turn Jude's oxygen monitors off but then noticed how low his oxygen was actually dipping and realized it was a concern. So we left them on and every time the machine's alarm beeped we cringed. Now this afternoon Jude is holding on room air again around 94. I just don't get it. All I can think of is his body gets easily tired so he works harder at night to keep everything normal.

So they are working on changing his formula to a brand that will hopefully not clog the line but that will take a few days. They are also still working on a night nurse and I have no clue when that will happen. I was very thankful for his new oxygen converter last night since being at 10 liters would have quickly drained his tanks.

Maybe tonight will be better and we will have better use of the new medications if needed.