Ryan had a little bit of a rough day. He has some head congestion – his nurse confirmed it is not in his lungs, and coughed a real cough several times today. I hate to think he has a cold. His nose is not runny and his cough was dry. I’m glad we are scheduled to see his pediatrician in the morning.
This all makes me a little nervous. I feel as if he is on loan to us until June when we hope to have a procedure done on his omphalocele and skin spacers inserted (we meet with the general surgeon this Friday so hope to have some sort of plan in place soon). I’ve been watching him A LOT today to see if he is having trouble breathing, see if he’s more blue, or see if there is anything out of the ordinary at all. So far, all I can come up with is the nasal congestion and dry cough.
I hate all this worry. Question to the parents with special needs kids: is it like this all the time? Does the worry go away? Is this what I’m in for every time Ryan is the slightest bit off?
(c) 2016 Leighann Marquiss
Comments (6)
Leighann, I was just checking on you before my day and am praying for you and a sense of deep peace and strength in knowing what to do. I sure have been feeling those same feelings with our Reagan-David and all he is going through medically. We go this morning to find out the results of all his testing. You are still in the early stages of getting to know Ryan and his needs so you have to give yourself a break and allow for some time to be on your side as well. The more you are with him at home adn the stronger he gets the more comfortable you will become in be ing able to address his needs in a timely manner. God gives us the gut reactions we need as mothersadn I have learned to never doubt them, they are usually spot on. Trust yourself, the deep nagging inside stuff and trust God. You are a great mother to Ryan and you girls!
The worry gets better. After the Glenn, life is so different. You will get better at knowing when everything’s alright and “normal” and when it’s heart stuff. However, I’m sorry to say that the worry never goes away. I am pretty sure that I could imagine Maggie in to imaginary heart failure at any moment if I let myself. I can look at her one moment and then the next say she looks way more blue and she’s probably she same shade as before. So, don’t worry too much but follow your gut instinct. If you think something is wrong then call the doc. That’s what they’re there for. You are his mama and you know him best.
Hang in there, it really does get better.
Hugs,
Faith
Leighann- I know with Rachel’s food allergies the “worry” never goes away I considered it more of an “on guard” thing. Our situation is different but with food allergies most people don’t understand that if they feed her the wrong thing she could some breathing so. YES, I agree with Sarah Joy TRUST YOURSELF even when the Dr’s, family , don’t agree. You are your child’s advocate!! That is some of the best advice I have ever been given. God does not give us a spirit of fear. Trust Him to guide your thoughts and trust the momma instinct. Remember this is a season this part wont last he will grow and get stronger.
Sending ((HUGS))
Kelly K
I wish I could answer you question, but you know Ryan better than anyone and you will figure it out. Trust your instincts and “Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
Leighann,
I finally feel like I can contribute insight– I’ve been reading your blog religously and have been amazed by all of your stories– Ryan is one amazing little kid. Two thoughts:
1) The doctors will tell you that Ryan can’t have allergies since he is too young to have developed allergies. This is true but our daughter– Madeleine– has been fighting a runny nose for well over a month a does not have an infection– we’ve had all of the blood work done and nothing is going on. While the doctors don’t think it is technically allergies, they believe it is “seasonal sensitivities.” Don’t ask me to explain the difference but essentially she has allergy symptoms without the full-blown allergies.
2) To answer your larger question, do you ever stop worrying? Yes and no. You’re a mom of two other girls so you know that you don’t stop worrying. As far as Ryan is concerned, you’ll stop worrying about certain things– blue lips etc.– but then he’ll change either through surgery or through growth and you’ll have to re-learn all of the warning signs associated with the health conditions you’re facing. Furthermore, when you’re confused a bit by the signs that you’re seeing, you’ll definitely question whether this is a serious issue or whether this is just an issue that Ryan needs to get through on his own. You have a whole team of doctors and others supporting you so don’t feel bad about reaching out and calling them. Still– you’ll likely find that your judgement is the only that you trust (possibly Henry’s as well) and you’ll learn to act on those judgements. Keep on keepin’ on– your faith and positive motherly attitude inspires our family.
our son has asthma….and when he was younger and we worried about his o2 levels– we ordered our own pulse ox. This really eased my mind. Of course, we still had to watch for other symptoms—-but this really helped us.