I have to admit I am having a hard time keeping up with the challenge. I usually don’t get a lot of time during the day to collect my thoughts and by the time I get Evan and Cam sleep I am so exhausted. Evan usually falls asleep around 10 but I have to wake him up at midnight for his last meds for the evening and I try to get him to take a bottle. Then it is time to play beep beeps and re-tape the cannula on his nose. He is so strong it is hard to get it on him after he pulls it off especially when I am half sleep. Nights like tonight I try to get a little nap before it is time to give medicine which includes thickening it up and waking him up. He typically falls right back to sleep so that isn’t an issue but I don’t always fall right back to sleep.
Evan remains NG tube free and the feeds are going. The oatmeal is proving to be very hard in his stomach. He woke up around 5am this morning with terrible gas and a belly ache. I gave him a suppository to help move things along which it did. gave him some pedialyte with his formula this afternoon to give his stomach a little rest which seemed to help however the Gleevac seemed to upset his stomach this afternoon. I usually give it around 4 so I think I am going to give it a little later in the evening because it also makes him sleepy and see how that works.
As tired as I am physically; emotionally I am feeling energized by what we are referring to as the ‘$5 frenzy!!’ There was a flurry of activity which started yesterday and really kicked in full gear this afternoon on the GiveForward site which was a total surprise. I am not positive who started the frenzy but it happened and we are so very thankful! Thank YOU to everyone who donated and to whomever originated the frenzy please let me know who you are! So exciting!!!
I do have some more exciting news that I want to share but you will have to wait until the morning…hahaha! Standby
Good Night Warriors!