Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Von woke up with a fever this morning. I hate days like today. He isn’t really that congested, has a slight cough, but he is whiny, clingy and tired. It’s 10 am and he’s already down for a nap. I am not sure if healthy kids get random fevers, but I’m learning that children with PHP often run fevers with no other symptoms due to hypothalamus dysfunction. The hypothalamus helps your body regulate temperature, and it sits right above the pituitary gland. Von’s appeared to be unaffected in the MRI, but it could still be not working correctly.

Fevers for a normal kid are stressful, but for a child with PHP it’s unnerving. When his fever hits 101.3 we have to stress dose him. This means he needs to get three times the amount of his regular dose of hydrocortisone. Then we have to watch and make sure it’s helping him fight the fever. Sometimes the triple dose just isn’t enough, and we have to give him more. If he were in a critical situation, he would have to be given an injection of solu-cortef which is a compound shot of highly concentrated hydrocortisone. Thankfully we have not had to use this yet.

Adrenal insufficiency is the number one component that makes PHP so scary. Todd and I constantly feel like we are on pins and needles watching him when he’s ill. It’s such a stressful time for us. We don’t want to give him too much medication because that can wire him and make him incredibly hyper. However, if we give him too little he can have an adrenal crisis. I constantly feel like we are walking on a tight rope, and we are balancing so finely that any slight wind could knock us over.

This is not how I imagined motherhood to be. I never in a million years imagined having to care for a child that had a rare disease. Yet here I am, and I’m trying to find a way through this very murky water. I think the hardest part for me, is that I can absolutely never commit to any sort of plans. Von’s health is pretty fragile, and when he’s sick we can’t really take him out. This can infringe on a social life, but it also gets in the way of every day things like grocery shopping and running very basic errands. I feel very stretched thin at times, and I also feel incredibly isolated. I didn’t sign up for this, and that makes me feel incredibly resentful of parents with healthy children. I know, I know, they can’t help that their child is healthy. I just wish for a moment, I could taste what it felt like to be a parent to a healthy kid. I wish I could drop Von off at a baby sitters for the night, and go on a date with my husband. I wish I had the freedom to leave him over night with my parents. However, we just don’t have that luxury, and we may not have that luxury for a really long time.

I’m sorry for the pity party this morning. I just had so many things I wanted to do today, and now it seems we are at home with a sick little boy. He will get lots of cuddles and love for sure. Which isn’t the worst thing in the world. I just wish one weekend could go as planned.


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