2nd Try

I had an entire post all ready to publish and it disappeared. How can that be?

Last night was not fun. X had cycles of sleeping for 45 minutes then being awake for about an hour the entire night. He had been getting his tube feeding for a couple hours when he began thrashing, flailing, kicking, crying, and yelling "ow". We tried to keep the feeding going for another hour, but he was so miserable we had to stop. Within minutes of turning off the feeding tube, X relaxed and fell asleep for a couple hours before the whole sleep-awake cycles began. We did pedialyte the rest of the night and he did fine with that.

I have to say that Craig and I are much better at troubleshooting and figuring out what X needs, even in the middle of the night. It's nice not to be in complete panic mode wondering if we should call the doctor, bring him in, or wondering if it's okay to shut off his feeding pump. We've come a long way

When X wakes up in the middle of the night miserable, he is not an easy one to comfort. Typically he wakes up thrashing, kicking, tossing and turning, flopping from end of the bed to the other, crying, yelling and calling out for me. However, when I try to help him, he does not want me near him, touching him, etc... All while this is playing out, he becomes entangled in his tubing. In his frustration and half asleep state, he will start yanking on that tubing and he resists any help. It is a very surreal experience in the middle of the night. Most of this happens while he is in our bed.

If he is half dreaming and like this, it gets even more interesting. He will often act out what is going on in his dream and we have to get into the dream with him. At one point last night, X was yelling " I can't get to you Momma! You are too far away!" I was able to hold him and tell him I was there and that we didn't need to go anywhere, however he became upset and started yelling "I need to get over there!!" and tried to get "over there". I had to hold him in the bed and pretend to carry him "over there" and then he calmed down and fell back asleep. As this is all going on, Craig is trying to make sure X isn't getting all tangled in his tubing or that he doesn't get too far away from the feeding pump so he doesn't pull on his button ( the part that comes out of his stomach that his tubes attach to). All of this continued until 6 am ( I do have to say our nights can be pretty exciting around here. Thankfully N can sleep through anything, so he has never been woken up).

In the morning, X ate a piece of jelly toast. He even requested it. This has never happened while he has been sick since receiving the feeding tube. Never. He did throw it up later because he was coughing, but we were thrilled he ate something. In fact, Mr. X ate almost 300 calories. This is also unheard of while he is sick. He even ate real food, not just Popsicles. It was very encouraging to see.

At 7:45pm we hooked X up to his feeding pump with undiluted formula and at the rate of 89ml/ hr. He is still hooked up at 1:00am. He hasn't thrown up or thrashed around in the bed and is sleeping peacefully. He even has a cough. This is a major milestone around here. I cannot even begin to describe how big this is over here. I tear up with joy, because this has never happened while he has been sick since getting the feeding tube. Never. He's been like any other child who is ill.

The plan is to keep him on undiluted formula until 4:00am and then switch over to pedialyte to give his gut a rest while making sure he receives the fluids he needs. Even if he does throw up between now and then, I am still going to be thrilled. This is a major improvement for him. This is the most hopeful I have been that X will not need to have this feeding tube forever.

Tonight/this morning, I am grateful that X is doing as well as he is while being sick. I am grateful for the huge improvements we have seen. I am grateful for renewed hope.






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