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Tuesday, 21 October 2014

Docs & Meds

These past 2 months have been a little intense under some aspects.

This month we had him retested with his known food allergens hoping that the number would be decreasing but actually discovered that they have ALL worsened... not to say this won't change by next year, but for now the allergist prescribed him an EPI pen. Unless he eats a bowl of mac and cheese or an entire cheesecake I don't know why he would need an EPI pen, but nonetheless that's that.

In September we were in the ER with Ezra because he was having "labored breathing", he got a chest xray, breathing treatment, had oxygen tube in his nose all night, Brian Ezra and I ALL slept in a tiny hospital couch overnight, they drew his blood (I lost count how many times) because it kept getting coagulating, people started unnecessary drama, it was hell on earth. 

While in the Er they found one of his levels high, we are currently getting retested to investigate into this level and find out if it's a fluke or what. 

Dealing with a toddler in those types of situations, really I think, breaks people into a million pieces and then transforms them into stronger, more patient, and well, older looking individuals.

The sent us home after 24hrs saying that it must have been just a virus.

At the beginning of October, Ezra had another, milder, breathing episode- so I took him to the pediatrician's office in FEAR of ending up in the ER again! At the pedi's office they gave him a short ibuterol breathing treatment and he got better.

Finally, just this past weekend (mid October) He had another episode of scary breathing, the worst one yet.. this time with scary wheezing and an ALARM when off inside of me. I was picking him up from school and laid him down for a nap terrified about his breathing. He was miserable and sounded like a balloon deflating. I was panicking. Meanwhile I got on the phone with the Pedi's nurse who reccomended to take him to the ER because they are not supposed to go long breathing that way.

I took the sleeping angel and prayed he'd stay asleep in the car seat but NO he woke up and we headed to the ER....

This last trip only lasted 3 hours and not 24 thank goodness, but this time he was pretty much diagnosed with baby's asthma: reactive airway disease.

We got prescribed a nebulizer an inhaler and a DAILY anti allergy med for him. We are still considering whether we want to do that daily med.

Meanwhile, we had been discussing rehoming our dogs because everytime Ezra plays with them he gets itchy by his wrists and gets eczema and I always have to wash him and then the little itch goes away.

Now with this newfound "asthma" situation, we are sure, beyond my bawling, that re-homing the dogs is the ONLY way. This is also a situation I never thought I'd be in. I don't let myself think about the dogs long enough because if I do I change my mind and bawl all evening.

It's been way too chaotic with meds, docs and hospitals lately... I never thought we'd have to worry about ANY of these things, but it seems that each kid has "his/her thing"

Trying to stay positive and look at things from a big perspective, because we do have a healthy, spunky sweet angel of a boy.


Lauren C. said...

Heartbreaking but necessary. I'm sorry, Vania!

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stephanie said...

I won't take up tons of space, but I'm glad I decided to check in on this today!

Asthma is one area of life we don't fuck with, to be totally blunt. When J got diagnosed I looked up all kinds of natural and herbal and dietary treatments and ideas, and Sean totally put his foot down. Sean puts his foot down like once every five years, and in this case it was because he grew up with asthma, still has asthma, and says not being able to breathe is one of the most terrifying things that have ever happened to him. When J was first diagnosed he was prescribed an oral steroid (Ezra is too young for it, I believe) called Flovent. He took one puff in the morning, one at night. He was also given albuterol to use as-needed. The first winter (J's triggers appear to be cold and rain, because his breathing is way worse in Portland than it ever was in AL) we were in and out of the ER several times, probably 3-4 times a month. We upped the Flovent to 2 puffs in the morning, 2 at night that April. When winter 2013 hit again we were back in the ER several times a month, and then in the spring we added a daily allergy med, Singular, to the mix. We also started carrying a liquid steroid called Prednisolone that I HIGHLY suggest you talk to your doctor about if you don't have it - it's intense, but powerful. Our pediatrician told us that he's never seen a breathing case "go bad" (which means what you think it means, like fatally bad) in the ER if the kid had already had prednisolone before coming in. J has had to use it twice, and both times it was a game changer within 20 minutes and prevented ER trips.

So far this winter we haven't visited the ER for breathing (huge milestone for us! Now on to not having to visit for bleeding...). If we make it until his next appt in April we'll all know (us + his doctor) that we have the right mix of treatments for him right now. Do I love that he's on all of these? No, but I love that he's breathing well and able to function at the high activity level he has and not coughing all night and not turning blue and not coughing so hard his chest is bruised more.

I 100% suggest you talk to your son's doctor about any concerns about the medications -- don't look it up online. What I have learned in our son's lifelong medical-heavy experience is that what you seen on the internet is generally a collection of worst-case scenarios or ill-informed people. When it comes to my son breathing, I'd 100% rather go with the medicine his doctor prescribes, see if it works, and adjust accordingly.

Our biggest hesitations with flovent were that it can lead to kids being a little shorter (the difference is literally in centimeters, so tiny), but J is measured every 3-6 months by his doctor and is taller than average so we're good so far. The allergy medicine doesn't bother me because all the interactions were explained to me. There's no shame in being on a medication long-term, especially when it's something like this.

Anyway: if you ever need advice, let me know! We're extremely well-versed in doctor-speak and ERs and asthma treatment and juggling medical conditions. It absolutely proves to you how strong you and your kiddo can be.

Vania said...

Thank you so much Stephanie :) that was really informative. Truly I think you are right, it is not something to joke with and the meds HAVE helped him before. In our particular case it seemed a little bit rushed to prescribe so much, even though he did need the meds when he began getting cold. I do 100% believe that the horrible fall/cold season will be our biggest struggle and I am glad that we are semi-out-of-it.

stephanie said...

For sure! When we hit summer we go way lighter on the meds. Everyone keeps telling me that asthma gets worse as they get older, before either going away in the late teens or at least stabilizing (for example, Sean doesn't take any regular meds at all and just carries albuterol with him if he needs it). A friend's son just spent several nights in the ICU with the same thing Ezra was diagnosed with, and they basically said it'll become regular asthma as he gets older. If you ever need any other info let me know!