Last night sucked! But it could have been worse. On Wednesday, Jax woke up with cold: runny nose, watery eyes, a little cough, sneezing, etc. I thought for a second it might be seasonal allergies! We gave him an Albuterol nebulizer treatment before bed and he slept like a rock.
But on Thursday afternoon, Jax started wheezing. Not alot, but every once in a while, I would hear the tell tale “whistle” as he exhaled. As you know, any sign of wheezing or breathing difficulty is a huge red flag for Jax because of his history with Chronic Lung Disease.
We went into see his pediatrician and at 4:00, they did another neb treatment. They sent us on our way with instructions for regular neb treatments (every 4 hours) and a follow-up appointment on Saturday morning.
By 7:00, Jax was ready for another neb. I could tell because he was starting to wheeze again. Then, by 9:00, he was ready for another. That’s when I knew the Albuterol was not doing enough to open his airways. We left right away for the Children’s Hospital Emergency Room!
We have been trained to recognize the signs of respiratory distress: wheezing, retracting lungs, increased respiration rate. Jax was showing all of these signs; I knew I made the right decision. But the whole drive there, I kept thinking “is this serious enough for the ER?” YES! YES! YES! I’m a first time mom. But I need to be more confident in my “gut!”
It’s scary, you know, driving your kid to the ER!
I’m so glad I decided to make the 45 minute drive to St Paul! It’s just a better place for kids! (During his last sickness and wheezing episode, we went to Urgent Care in Burnsville because it was convenient. But they don’t know kids. They especially don’t know mirco-preemies!) I will never take him anywhere else!
In the ER, he received another “suped up” neb treatment and had a lot of blood drawn for blood work, a RSV test, and blood gas levels. I still don’t know the lab results. They also did a chest X-ray where they found an indication of…
pneumonia.
He got an IV injection of antibiotics and they monitored his oxygen rates while he slept for a while. They were on the fence about keeping us overnight. They asked if I was comfortable taking him home and I said yes (by then, it was 3am, so I couldn’t see the point of staying). I know how to give his neb treatments (he hates them!) and I know how to recognize the signs of trouble. Plus, I was tired! Maybe I should have let them admit him…what would you have done?
Today, so far, he’s doing ok. This morning he got a steroid neb treatment to help keep his airways open. We will give the Albuterol neb treatment every 4 hours. He was also prescribed an oral steroid that we will start tonight.
In the NICU, Jax got a lot of steroids (at least 5 rounds that I can remember). And now I need to do more research on the long term effect of steroid use in babies! Any other parents out there have thoughts / resources about this? Did your babies receive steroids? How many times? Have you noticed any long-term effects?
Today, if he needs a neb treatment more than every 4 hours, we’ll be right back in the ER!
What’s scary to me is that Jax’s cold turned into possible pneumonia within two days. Things can turn very quickly for a baby with Chronic Lung Disease. His lungs are still not fully formed. It’s obvious that a “regular” sickness is much more than just “regular” for Jax. Is it time again for stricter lock-down?
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An Early Start 
So sorry to hear Jax had to visit the ER! That is scary and no fun for any of you. Hope he is feeling better today 🙂 We use albuterol for Jack whenever he shows any cold/allergy symptoms. But, we also use a daily “maintenance” inhaler (Flovent) – it helps with inflammation. When we use both, the albuterol opens up the lungs and helps get more Flovent in. (Does that make any sense?) Does Jax have a daily med too? I really feel like that helps Jack. We had a pneumonia scare back in February, but he handled it well. But, we also did 2 years of pretty strict winter isolation…and were pretty cautious this 3rd year too.
We haven’t had to use oral steroids since the NICU, but I’d love to hear any info. you find about the long-term effects.
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Thanks, Heather! How did you decide that Jack needed a daily inhaler? What was the criteria for going from symptom treatment to daily treatment? We were very strict isolation this winter and are still really cautious when we go out: no kids touch him, everyone washes their hands, etc. It’s scary that his colds seem to turn immediately into lung issues! We decided not to use the oral steroids and only use the neb steroids – I wasn’t comfortable with using both! He’s already showing signs of improvement, so hopefully we’re on the downward swing!
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Hey there! Just read today’s post and am glad to hear that Jax is starting to feel better. Jack had either pneumonia or atelectasis in Feburary. Pedi said pneumonia, pulmo said atelectasis (from CLD and prematurity). His illness went from a fever to wheezing, retractions, and tachypnea in a matter of 24 hours. I couldn’t believe how quickly he went downhill…and this was after 2+ years of pretty extreme isolation. It scared me for sure. That being said, he recovered quickly with extra Flovent and added albuterol and antibiotics (which we discovered he is allergic to penicillins). So…long story short…Jack has been on Flovent since the NICU and his pulmo has never talked about weaning. I think it was decided on back then because of the severity of his CLD (vented for 11 days, but on C-Pap for 3 months and then on O2 at home until he was almost 11 months old). I would definitely mention a daily maintenance med during Jax’s next pulmo appt. I feel like it has kept Jack healthier than without it.
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Thanks. Hmmm…I might have to bring this up with his pulmonologist. Other preemie moms are the best source of information – thanks! 🙂
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oh Andi, so sorry you went through this, it’s sooo nice to see little Jaxson, he looks so much bigger, but I am sorry his lungs are giving him trouble, I will pray for him from here… the meds Albuterol, stereroids, sound too familiar, I am an asthmatic myself and just this morning got a call from my doctor on why am I re-filling Albuterol too often, well, the wheezing, I know that sensation, but hey! I am an adult, I am so sorry little Jaxson has to go through this… I hope he recovers soon and as other moms said, do trust your first instinct, MOM KNOW!! hugs for you both
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Thanks, Bere! I know you struggle with asthma and you know all too well about wheezing, etc. It sucks (for anyone, big or small)! He seems to be doing a bit better today, so hopefully we’ll be able to pack up that nebulizer soon!
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Andrea, ALWAYS trust your guy and take the drive to children’s. We spent a week in Mpls with RSV last year. Lots of neb treatments. Even a year later if he catches a cold we have to neb him. He turns into a MONSTER from them, I hate all of the steroids. But they help him breath and get better faster so I give them to him. Haven’t noticed any long term effects but they do change him into a completely different child that’s for sure!
Good luck and hope he feels better so you can get some rest!
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Yes – it was amazing the different experience between Children’s and “regular” urgent care. I didn’t know Joey was in the hospital for a week last year – RSV is nasty business. It’s amazing the lasting effects. I can tell the steroid nebs amp Jax up, too. I think the immediate effects outweigh the risk of long term effects, for sure!
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Poor guy, glad he is doing better! That’s right trust your gut, it is always right!! Good job Mom 🙂 If your gut said you were okay bringing him home, then you did the right thing. There is no right answer. You are right, you know your baby best.
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Thanks, Kelley! I usually do act on my “gut” feelings, but I can’t help but second guess myself!
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Oh my goodness, you’ve been through the ringer. Sorry Jax is going through this. How scary for all of you! I hope he gets over this quickly. Hugs to you!
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Thank you! Jax is such a trooper – he’s much stronger than I am! 🙂
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