I’m a little overwhelmed by the amount of information we learned today about Nickolas, so I thought it would be easier for me to tell everyone through my blog...
I also don’t know the name of everything she threw at us, so bare with me as I try to explain it without a name.
The Immunologist confirmed that Nickolas does have an immune deficiency based on some previous blood work on his T-cells and B-cells. The only way to know the type or extent of the deficiency, though, was to re-vaccinate him on Pneumonia and DTP (diphtheria, tetanus, and pertussis). He got those today....and the pneumonia vaccine they gave him was protein based instead of polysaccharide based because that will also tell us some extent of the deficiency. 4 weeks from today, we have to take him to All Children’s to have these same T and B cells checked....but All Children’s also has the capability to do some other type of test that will in some way help the doctor a little further with understanding his body’s reactions. We’re looking to see if his levels improve, get worse, or stay the same based on this dose of shots. And depending on the answer, it leads us to a diagnosis.
In addition, with his history, she thinks he could have something called Bronchial stasis. In short, this is permanent lung damage that’s resulted from all his illnesses and the bronchial malacia. The only way to know this, though, is to do a high-res CT scan. If it does show this, Nickolas would have to be aggressively treated with antibiotics anytime he’s sick, which could include up to IV antibiotics. This would be to prevent further damage.
We’re also scheduling a pulm function test to see how his lungs are functioning with all that they’ve been through....and at only half capacity.
So, what does all this mean. Well, there are two types of treatments for whatever shows up. The less aggressive treatment plan would be a preventative dose of antibiotics 365 days a year. The more aggressive plan is immunoglobulin replacement shots. Based on his history, she thinks the more aggressive plan is our best option at giving him a close to normal lifestyle....we just have to wait for all these tests to come back to help her determine how much IcG he needs and the frequency. We’d start with a round of I/V antibiotics to kill anything and get him started before putting him on the shots.
We’re hoping that within the next 5 weeks, we’ll have a definite diagnosis and treatment plan.
A few other things she said was that if he needs to go to the hospital for breathing issues, or because he’s sick...she needs us to come to her (All Children’s in St. Pete) and maybe we should consider a surgical consult about his bronchial malacia since he’s almost 3 and we’ve not seen much improvement. This won’t help with the immune issues, but it might help his sleeping and what not. And then the bigger thing is that we should consider bringing Alissa in, too. With her bruising so easily and tests also showing some immune deficiencies, she could have something altogether different, but something that should be treated just the same.
It’s so overwhelming right now.....it’s all good news....no matter what it is, she can help. It’s just that whole sometimes knowing is worse than not knowing. The only thing I look forward to is that she promised me she could help us get Nickolas to a point where he doesn’t have to live in a bubble....and I don’t have to be such a germ-a-phob. I’m counting on that, more than anything.
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