At least, this morning his blood sugar was back to normal and I was able to give him his precious Gatorade again. He cried out in the night several times for it, and I had to tell him no. It broke my heart. Cystics lose salt at every step of living their lives. Officially, our kids don't need Gatorade style drinks unless it is *really* hot. However, we're told to give them their own salt shaker and encourage them to heaavily salt everything they eat. M won't do that. He will drink Gatorade like it's going out of season.
His blood sugar levels (which should normally remain 90-120) crossed 600 yesterday. We don't know the exact number as the at-home glucometer the nanny ownes errors out with high glucose readings at 600. This morning, he was finally back down to 109. I gave him Gatorade immediately.
We could only feed him twice yesterday. His Palliative Care doctor told me when he starts retaining fluids, it is time to cut back on feeding him. Today, his face looks puffy. However, there is no evidence in his extremities and that could be from the steriods he was taking. So, we're going to feed him and aim for three feedings today. I don't want to distress him and cause more pain, but I also don't want to cause distress or pain by not feeding him. Without his ability to report what happens in his own body, we are very limited in knowing when he reaches the point that it's time to stop giving him calories and fluids.
This morning, he complained his neck hurt. It was a bizarre complaint I have never heard before but I gave him pain meds anyway. He's tolerated me giving him a few efforts to comfort him and mostly he's crawled back under his beloved Cars blanket and crash back to sleep. So far today, I am not seeing the period of lucidity that we have been seeing to this point.
Everyone keeps asking how I am doing. I cannot leave this child's side to take my walks. I can barely go to the bathroom. I did get a nap yesterday while II was with him. However, he gets distressed if I am not close. I did go to my massage yesterday afternoon and he was unsettled and tantrumed the entire time I was gone.
II had to return to work today. He cannot sit a daily death watch when we don't know how long this will be. Therefore, the nanny is going to have to buck up and watch M for an hour this morning, one way or another. Actually, she'll need to watch him for 2-3 hours. Not only do I desperately need to go for a walk, but I have to take a child to a doctor's appointment late morning that I cannot cancel. There is nothing else that will take me away from him until Friday, but I need to make walking a high priority. I've missed two days again and I never feel well physically or emotionally when I do that.
This is hell. He was supposed to get tired and fall asleep. He was never supposed to have his lungs crash harder and faster than his liver and suffer the continued pain he is experiencing right now. Without the steriods, there is so little I can do to support and comfort him. Last night, he went to the bathroom and came back insisting he wanted to go play. I just kept telling him he needed his oxygen while he swayed back and forth trying to tantrum until he fell on his butt, and gave up the fight. His body is failing him and I cannot protect him from this. I can give him his Gatorade but somehow.....that just seems so inadequate.