Category Archives: ACTH
3 Ways to Prepare for RSV and Flu Season – Special Needs Edition
RSV, Cold, and Flu season is here, it begins around October and goes through May. Flu shot vaccine helps prevent spreading of the flu virus. There are many reasons why people you should go out and get the flu shot, but if you have a special needs child getting a flu shot is critical to their health. Max received his flu shot once they became available, and we all (my family) plan to receive one for Max’s health. Please go out and get your flu shot to prevent the flu illness.
Respiratory Syncytical Virus (RSV) is a common cold in most, but in premature babies it can be fatal if not treated properly.
Whatever It Takes….Even if it Makes me Uncomfortable
Have you ever heard people use any of these sayings, “I’ll do, what I have to do; Use Me Lord; It ain’t nothing to it, but to do it; I got this; By any means necessary; I’ll do whatever it takes!”
Most of us, if not ALL of us, have spoken at least one of the above sayings, or some variation, in an effort to attempt and achieve goals that either take us out of our comfort zone, or aren’t so easy to achieve. For me, these last 8 months have definitely taken me out of my comfort zone. In my last post, I’ve Always Wanted to be a Full-time Pastor, and Finally….,I shared how my wife, Erica did most of the bathing, feeding, dressing, and administering of medicine for Super Mighty Max; but how when the roles got reversed, it was primarily on me. My attitude, when it comes to Super Mighty Max, has always been “I’ll do, what I have to do; Use Me Lord; It ain’t nothing to it, but to do it; I got this; By any means necessary; I’ll do whatever it takes!” However, I never realized what that entailed, and how uncomfortable it would make me.
Again, to take care of Super Mighty Max, stretched me for about 6 weeks, to care for Super Mighty Max from sun up to sun down, without a babysitter. I can’t stress enough how difficult this was for me, especially since Super Mighty Max still had a lot of medical issues not be addressed at that point in time. I now had the responsibility of giving all medication, which made me very uncomfortable, many times I was scared that I may give him an overdose. I had to learn how to properly use, vent, and care for his G-Tube, which always carries the risk of being infected, which it did! That was most uncomfortable, considering that Erica was out of town on a job interview at the time. Mentally, it was uncomfortable, because I had to remember every medication he was on, every dosage, every doctor’s recommendation, every upcoming appointment, and be a first hand witness to the discomfort of my son, Super Mighty Max. Oh, and who can forget the $15,000+ in hospital bills, I mean really, what do you do with that?
Fortunately, as the months have gone by, and days have passed, its gotten a little bit easier! Not totally easy, but a little easier! We still have a lot of appointments, we had 3 last week and 5 this week, but we’re used to it. The hardest for me to do thus far, is to give my son an injection of ACTH (Adrenocorticotropic hormone) by needle each day!
I hated when my son had to get shots, he’d cry hysterically (I would too), so the thought of me giving one didn’t sit well with me. Thankfully, he no longer cries when receiving the injection, which makes it easier to administer. I also hated giving him the ACTH (seizure medication) because it costs $30,000 a vial (THANK GOD FOR INSURANCE”)!
At one point, we had 4 vials in our refrigerator, totaling over $120,000; I’d wonder at times, how much I could sell it on the black market, LOL, just playing!
So, while I’ve been made extremely uncomfortable these past 8 months, my attitude is still “I’ll do, what I have to do; Use Me Lord; It ain’t nothing to it, but to do it; I got this; By any means necessary; I’ll do whatever it takes!” While it’s surely easier said than done, I thank God for a supportive wife, a Village of family and friends, a closer church, and prayer! This has helped tremendously!
Thanks for reading and keeping us in your thoughts and prayers!