Longest day, EVER

Having a child is hard. Having multiple children is harder. Having children with extra specials is twice as hard. Having multiple children with extra specials is twice as harder.

Early Saturday morning was tough. E, who is my cfer, developed a cough. Coughs are one of the scariest things for a cfer. Cf does not clear the mucous out and therefore bacteria and other nasties get trapped. You’re sicker longer and it damages your lungs over time.

Her sister has had this cough for about a week. No other symptoms other than this nasty cough that sounds like death. A likes to love on E. she loves to be in her face, touching and living on her. It’s sweet but scary too. A isn’t even 3 yet and doesn’t understand germs, illness or boundaries. She doesn’t understand when she coughs near her sister, or anyone, that she’s spreading germs. We’re working on cover your mouth when you cough. She doesn’t mind washing her hands or using hand sanitizer. But the coughing or sneezing, that’s been the challenge.

So low and behold, E wakes up Friday morning with the death cough. No other symptoms, just the cough. We saw her pulminologist on Wednesday and her lungs were clear and she looked great. Her doctor took a throat swab to see if she cultures anything but she wasn’t concerned. Fast forward to Friday and we have a death cough. What do I do? I have no precedence for a cough in a child with cf. with my other two I’d watch and see what it did. Especially if there were no fevers. Not much you can do but wait it out. But with E, what do I do? We’re not on any treatment schedule. Nothing daily. She’s happy. Doing her normal thing, eating fine, but the cough. Is it in her lungs? How do I know? ER’s are germ filled. Full of sick people breathing. She could pick up any level of nasty there. I have an email out to her doctor. Other than the cough she’s fine. So I wait.

11:30pm. J is crying. Why is J crying? We all went to bed late because we had a BBQ with friends. It was a good night. Everyone was happy. Good was great. All 3 fell asleep quickly. Mr. J goes in and is punched in the face by the smell of poop. J hadn’t pooped all day and he exploded. Now he’s in the bath, crying. Sheets have to be changed, J has to be scrubbed, baby is crying and coughing. By the time J is clean, bed is made, sheets in wash it’s after 12. Baby is coughing. So to the nurse advice line I go. What do I do?

After that call we’re headed to the ER. I called ahead to see what procedures were in place for cf patients. I’m not about to add to her cough if I can help it. We get to the hospital, I check us in and they put us in a room. We don’t have sit in the waiting room. She’s wearing a mask for the first time. She hates it. She’s crying and then she starts chewing on it. Doctor checks her. Her lungs are clear. I can breathe. He checks with the pediatrician on call and they do a nebulizer treatment just in case. We’re home and in bed at 3:30am.

Saturday was a long day.

Sometimes I feel very inadequate to the task I’ve been given. That I’m gonna fail my kids. That I’m gonna run out of energy. E still doesn’t sleep well. I’m literally exhausted 90% of the day. The only thing that keeps me functioning is that my kids have busy schedules. I can’t stop. I don’t want to make the wrong decisions. Especially where health is involved. It’s one area I can’t make a mistake. It just seems sometimes that the colds and such just keep cycling through the house.

I find I second guess myself with E all the time. Things that were second nature with the other two, don’t apply to her. Her doctor has a positive opinion of her cf. She doesn’t think E will have to hard of a time. I want that to be true, but I also what to be on top of every illness to make sure. To be proactive. I can’t afford two week hospital stays. I have two other kids. Plus I want Ellie as healthy as she can be. I don’t want hospitals to be her normal.

Today adulting is hard. Today I hate cf. I hate autism. Today and only today I’m gonna have a pity party, that life is hard and why my kids. Tomorrow I’m gonna hit the ground running because this is my life and it won’t stop or change cause I’m hurt, angry, upset or all three.

J has autism. E has cf. It’s just our life.

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