Saturday, April 12, 2014

Worse than Diabetes?

Back in September J was diagnosed with low IGA also known as immunodeficiency disorder. To be honest I kept thinking "right,  another thing we can handle it", and we can but little did I know that it would be more of a nuisance in our lives than diabetes.

For years on and off we saw a sore throat or random tickle in the morning or runny nose, all things that  kids get. Cold are innocent and nothing to worry about, we thought. Turns out that those colds where the sign of what was to come, which ended up being chronic sinus infections all the way from September 2013 to January 2014.

On our wish that was granted to Disney World (Kids Wish Network, I need to blog) J literally had to carry plastic baggies with him to spit up every 20 minutes, he would have coughing fits and  vomit right in front of a ride or restaurant, his breathing went from 98% to 45% in one week due to the nasal drip into his lungs. It was beyond awful.

We were on his 2nd round of antibiotics and prayed after 2 months, this would be it. 

Fast forward to January, 10 rounds of antibiotics later, 2 catscans, 6 nasal sprays, 3 steroids and high bgs in a pair tree, and we only had made improvement. He wasn't spitting up all the time, phlegm was clear not green and he could breathe better again. Catscan revealed swelling but nothing that needed surgery according to two ENTs, even though his immunologist thought different. J missed 32 days of school.

We went through extensive allergy testing, both food and environmental, and all that came up was mold. Mold which in Vegas is common, it lives in the dirt and sand outside, so one bad windstorm and it's in our noses.

They put him on a daily allergy med along with nasal sprays as needed and asthma meds. I figured that coupled with vitamin C, veggies, fruit, lots of water, we got this!

The sore throats came on and off, from the sinus drip but nothing that would keep him home from school, or unable to play outside as it did before. The ENT and immunologist both said "This is it. He has low iga AND type 1, his immune system is a mess, and unfortunately he will get sick more often, and it will be sporadic and random. Low IGA means he can't fight infections as well as others, and also means his body goes into attack mode way faster. Nothing we can do but treat as it comes". That broke my heart.

Diabetes has stopped J a few times from say recess or having cake when bg was out range, but never has it dictated no outside play, no sports, no school, no exerting yourself for a month! Even if high he would happily go outside and run off the high bg in the yard, if low eat and move on, eventually.

This low IGA crap keeps him prisoner. We were told it could be worse; he doesn't need immuno therapy and he isn't hospital bound". We know, and I'm thankful, but that doesn't make THIS any easier. His IGA has also dropped again, so what does that mean for the future?

Here's where we are today April 12th, Js sugars will not come under 200, even with plus 70 basal. He has a fever and he can feel liquid dripping down the back of his throat, and is blowing his nose every 10 minutes. He has been put back on antibiotics. 

There is more, today hubby took off to surprise S with a day at the carnival for his birthday (4/8) and Monday J is supposed, to leave for diabetes camp.

I'm determined to fix him, determined to get his fever down for the carnival and have him better by Monday morning. I could not bare to see the heartbreak if this caused him to miss camp and the carnival all the same weekend! 

Sadly, I can't control everything, and just knowing how awful my J feels and how much he has missed because of this is guy wrenching.

I feel lost. 

* UPDATE! Spoke with camp in charge and he said as long as fever is gone ring him! They will take care of him and watch him closely. He also said even if we have to bring him up a day later, that's ok. So let's pray the fever Js gone!!!!


Joanne said...

Wow... I had no idea you were dealing with all of this. Poor J. Poor Mom. I hope he's good to go by the start of camp.

bvrooks said...

Lexi, I am sending the biggest hugs ever and abundant prayers your way. I hope that J is feeling a bit better and is able to start camp tomorrow. I also hope that you are able to rest a bit easier (I know it won't be completely restful or worry free) knowing that J is in good hands and that they will keep a close eye on him.
Much love!!

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