WARNING!! – I have to vent. If you would rather not have to read the venting, no offense taken, skip down to the last two paragraphs and have a great day!
Because his pancreas doesn’t work completely, Nicholas has to take enzymes every time he eats. His body can’t digest fat and proteins, so he has to take 3 to 4 capsules every time he eats. Because of the cf, it is hard for him to gain weight, so about 5 years ago they put in a feeding tube and he gets 4 cans of supplemental formula over night to help with that. And of course, because his pancreas doesn’t work properly, he has to take 5 of those enzymes at night when he gets hooked up and 5 in the morning when he is finished. It’s not life or death for him to forget to take the enzymes, BUT at the same time, if he doesn’t take them, his stomach will not be happy, and if forgotten more than once or if he stopped taking them at all, he would suffer from malabsorption. He would lose weight and, let’s just say, it would not be a very healthy decision to make.
We don’t realize how many hats, we, as mothers wear in a days time. We have the mommy hat of course, then there is the doctor hat, friend hat, personal driver hat, cook hat…you get the picture. Well, this morning I had my mommy hat on. Don’t make me put on the mommy hat. You may not like me with the mommy hat on. First let me say that, if any staff member of UNC Hospital is reading this, I am not directing this at any one person. We love the nurses and doctors and everyone here. Having said that, I realize that nurses get busy. I realize that taking his enzymes is not a life or death thing if they are forgotten once. BUT, last night the nurse did not remember to give Nick the enzymes before his tube feeds. I remembered, and he got them – no harm done. Sometimes nurses forget in the mornings so every morning I ask Nick if he took his enzymes and this morning he said no because no one woke him up. There are other things that make this more disconcerting, but I won’t mention those because, well I just won’t mention them. We are already having problems with digestion (to say more would be TMI) :o) and I just want my child to get what he is supposed to get. If I am responsible for making sure his meds are taken, then I will make sure he gets them, but If a nurse is responsible, then she/he should make sure he gets them. So today, Nicholas will have stomach issues. Sorry – I had to vent…warned ya.
Good grief – I hate getting up first thing in the morning and having to deal with a problem. ugh!! I know, I know, I shouldn’t worry about such insignificant things, but the mommy hat had to go on. They are still very concerned about his weight (that is another reason why this is so important) so they are going to make sure he is weighed at least every other day. We went to bed late and got up early. Nicholas is finishing up his exams today. He hoped to do that yesterday, but he had a bad migraine and he slept if off for most of the afternoon.
We are praying for weight gain and continued improvement of his cough and lung function. Hopefully, we will be having another test on Thursday. I hope you all have a great day. Check back in tomorrow – same bat cave, same bat station.