As we have always done in the past, we turned on a cartoon as an attempt at distraction while the neb ran. I could hear that the medication was working (thank goodness), but before it began to take effect he repeated, "PLEASE HELP ME!" between gasps. It was heartbreaking! This has not left my mind today. I thought of it a thousand times and my heart lurched every time. After the neb we gave him a dose of oral steroids and in standard fashion I wanted him next to me in bed. The ONLY time we let our boys into our bed at night is when they are sick, so it was a rare and special event! I could tell that Elijah was still rattled by what had just happened because he would NOT let go of me. Both arms were wrapped tightly around me and this is not something he does very often. I wrapped myself around him right back and said a prayer out loud: "Dear Jesus, please let Elijah know that he is SAFE, PROTECTED and LOVED." A few seconds later... "Mommy? You are loved, too, you know." It came from a very genuine place, which doesn't happen all the time with him. I am so grateful to be both his and Sammy's protector and to be one of the two people responsible for making them feel safe and loved! I love my boys so much!
His stridor came back a bit as the night went on (this is typical), but it never got bad enough to warrant too much worry. He had a runny nose today and sneezed a bit, but we didn't hear any more stridor. I gave him a preventative half dose of steroids before bed tonight. Dan is gone working all night tonight, so I'm PRAYING it'll be a quiet one!
We kept Elijah home from school again today, which was the third consecutive school day. We discovered that more than three days in a row warrants a doctor's note, so we'll reluctantly send him back tomorrow. Although it seems like five days away should be PLENTY of time to recuperate.....it's not. Not for him. He reaches boiling point much more quickly than the rest of us and it takes him MUCH more time to get below boiling point. I've been doing everything possible to get his days at school shortened. I talked to the sp-ed supervisor for our school district today and explained our intentions behind keeping him home and reiterated that he just absolutely needs shortened school days. She seemed willing to explore options for him, but....shortening his days are a last resort, as I suspected. As unique as Elijah's situation is, they are still going to do everything possible to keep him in school full-time. I haven't fully processed this yet, and I'm not sure what is going to happen. I know that we cannot expect him to carry on as is. If the doctor/school won't allow us to shorten his days, we are going to have to find another answer. A few options in my head at the moment: short-term homeschooling (while we find a school more suitable) or simply showing up at school at 1:00 every day to take him out. Apparently E's neuropsych and teachers have been unable to connect, but I'm PRAYING (soooo very hard) that the doctor will be behind our thoughts 100%. If he is, this should definitely carry some weight.
The people from Elijah's school keep assuring us that they "realllllly want him in school," which is great! But....do they want what is best for him....and what is best for our family?
Please pray for a peaceful night for us! I'm a tiny bit on edge having Dan gone and being on semi-croup alert. Thanks for checking in! I have really fun photos to share from a family outing we took this past weekend. Maybe tomorrow I'll get them posted!