Blindsided by a Confusing Diagnosis

I don’t even know where to start. Because I’ve been awake since before 3am and my mind is racing. It suddenly feels like asthma is taking over my life.

I shared here of our hospital stay with Levi (6) over the weekend. We were released Sunday believing we were taking our child home to recover from pneumonia. That seemed to be the diagnosis, although looking back pneumonia was mentioned multiple times. but I guess not as definitively as we had thought.

childhood asthma faith in adversity

I’m not even going to rehash all the reasons we believed he was being treated for pneumonia because my goal isn’t to bash the medical staff. They were very kind to us, gentle with Levi and I know for sure he needed to be where he was since he couldn’t maintain O2.

In short, I’m angry but I understand God is asking even for the anger.

Yesterday we had to get an appointment to have Levi checked out to make sure being home was working for him. So I called and got a 3:15 with our beloved doctor.

This guy is amazing. He believes in full vaccinations and yet he supports our decision to selectively vaccinate on a delayed schedule. He doesn’t rush into the room and then blow out again before you have a chance to voice your concerns. He listens AND he hears…which is increasingly rare and took us MANY attempts to find.

Anyway, he reviewed Levi’s charts from the hospital and he looked at the x-rays. He informed me there was no pneumonia. Levi had a severe asthma attack that had been very difficult to get under control. In fact, it still wasn’t completely under control 4 days later. I pretty much felt the air leave my lungs.

“He was being treated for a severe asthma attack. That’s why they never gave him an antibiotic. It isn’t viral pneumonia, it’s inflammation of the airways. It’s asthma. On a scale of 1 to 4, with 4 being rare, Levi is at a 3. We need a long-term treatment plan to get this under control and equip you to deal with future episodes.”

And if that weren’t enough to process, he then told me he was writing a prescription for an epipen in case we found ourselves in a situation where asthma left Levi’s life hanging in the balance.

“Most people think of the epipen just for allergic reactions. But it’s a shot of adrenaline and if all other intervention fails, the epipen should buy you some time. If he gets to that point, grab the epipen AND the phone and call for help as you shoot it into his leg.”

Did I mention that we love our doctor? Because my eyes had to be round as saucers and I know my mouth was hanging open. I came in expecting to hear his pneumonia was in remission and instead I’m being told what to do to save my child’s life in the event of another severe asthma attack. After our ER visit a month ago, we thought we were dealing with mild, illness-induced asthma. I mumbled incoherent questions and he interpreted and then answered them. He offered support and comfort but he didn’t mince words.

He fed me the hard truth, tempered by hope, as I stepped through the portals toward parenting a child with a chronic, potentially life-threatening, condition.

childhood asthma faith in adversity

Pneumonia had been bad but I found myself wishing he had it.

The next step is a trip to a specialist at UVA, the best facility in our area for this type of thing. We’ll learn his triggers and potential allergies, and a long-term treatment plan will be confirmed.

In the meantime, our lives now involve scads of asthma meds and sleep-deprived nights of checking on him to administer blow-by albuterol treatments to keep his airways open.

But it also involves a total dependency on God.

Because while the medical staff at the hospital were kind, they were not all-knowing. They did not have the ability to tell us what exactly was wrong and how exactly to fix it. They did, indeed, take measures that saved his little life, but I believe God kept the truth of his diagnosis from us to teach us a lesson.

Our faith cannot be in doctors. And it can’t be in medicine. It must ONLY be in the power of an all-knowing, all-powerful, all-loving God who hears every wheeze Levi experiences.

So this morning, when I gave him his 4am treatment, I prayed for God to add his blessing and healing power to the medicine.

And I felt peace.

childhood asthma faith in adversity

We’ll settle in. We’ll establish a new normal. We’ll adapt to less sleep, more vigilance and a greater dependence on God.

That’s what trials are for. To show us how powerless we truly are. To bring us to our knees and to knock us off our high-horse.

I’m willing to learn what He has to teach me, but I have a few apologies to make first. Because I let my stress make me edgy and nothing will kill your witness before your family like being controlled by worry will.

I thank God that this system of forgiveness is a continual flowing of fresh starts. Both with Him and with each other. That is healing and restoration that goes beyond the physical body.

If you have your own journey of dealing with chronic illness, I’d love to hear about it. It helps so much to know you don’t walk these valleys alone!

Especially now, even more than yesterday, I realize how critical it is to be keeping our children covered by prayer. Grab your copy of our featured book, 31 Days of Praying Scripture Over Your Children, and kickstart your December by deepening your prayer journey!

Facebook Comments

4 thoughts on “Blindsided by a Confusing Diagnosis”

  1. All I can think of to say is wow! God has this. He is in control. Believe in his strength and wisdom. Sounds easy huh? Praying for you, your family, and little Levi.

  2. Kasey, I’m so sorry for all the confusion you’ve been through. This has been helpful for me…it reminds me of the importance of communication in my nursing role. It makes me want to be all the more diligent in explaining the diagnosis and treatments to my patients and their families. Praying for your little Levi and your whole family! Love you!

  3. We also had to deal with a child with asthma. Not to the same degree as little Levi has to “life threatening” but our little guy had many many sleepless nights due to this invasive thing called asthma. Finally, in a desperate attempt to help him, we tore out all of our carpet and replaced with laminate (the previous owners had a dog). We replaced fabric couches with leather. I swept my floors every day – sometimes twice a day to keep down dust. I put him on a radical – no artificial colours, flavours, sugars diet. The diet did not seem to matter as when we slowly introduced these things back into his diet – there was no reaction. But we firmly believe the no carpet/no pets/no fabric furniture changed his life. He went from inhalers every single day to only needing them when he had a virus. Now he is 19 and only occasionally needs the inhalers when he is outside in -40 weather skating and playing hockey on an outdoor skating rink for several hours – which that is his own fault!! I will add little Levi to my prayer list praying that you find his triggers! This. Condition. Steals. Life’s time. And. Energy. And health. From one who know.

  4. I almost lost my son to asthma and then to all the meds his heart was racing that when admitted the nurse was concerned.
    Please look into having tonsils and adenoids removed.
    Once his were removed the allergies decreased and the asthma just about disappeared. Haven’t need er or meds in a long time.

Comments are closed.