Days with Drew are great and fun, general 6-year-old annoyances and tempers aside. But, nights? Drew has spent the last several nights thrashing in restless sleep, screaming in incoherent and inconsolable outbursts. Because of his history, we are always inclined to believe he’s in pain. But sometimes during the outbursts causing him to hyperventilate and sometimes vomit, he’s incoherent as if he’s not even awake and reacting to dreams. I don’t know whether it’s pain, discomfort, dreams, breathing issues, or some other force causing him to sleep so poorly, but I do know that I have had it. I have reached my limit of listening to Drew writhe in pain and/or discomfort. I have had more than my fair share of watching my child suffer.
The most frustrating thing is that I can’t figure out what is going on thus I can’t relieve his discomfort. At times I know it’s pain and that’s somewhat easy to address. I don’t like that he still experiences some pain. He frequently complains about pain in either knee. I hope that pain will fade with time.
But, at other times I can tell that he’s not fully awake and is likely experiencing a night terror. Although he is a little old to be experiencing night terrors according to his doctor, I can think of no other reason why he’s unable to explain why he’s so upset. Through helpless gasps and tears, Drew will respond, “I don’t know!” when I ask him what is wrong.
He had this problem in 2012, before any of his leg surgeries. He was an awful sleeper. He snored and we would hear him stop breathing in his sleep. A sleep study confirmed that he had bad sleep apnea and inflamed tonsils were noted. Surgery to remove his tonsils and adenoids was scheduled. But, during his first two corrective surgeries, his sleep symptoms disappeared, I hypothesize it was because he was taking antibiotics during the time period due to his heart defect. We decided to not do the tonsillectomy as scheduled because Drew had been through a lot and we just wanted some normalcy back in our life. Now, his symptoms appeared to have returned including inflamed tonsils. We’ve already seen a specialist and his tonsillectomy and adenoidectomy is back on the docket for June.
To further complicate the Pain vs Night Terror debate, he sleeps better without his hip piece. Note: He wears long-leg braces on both legs. At night, we attach a hip piece which is a belt around the abdomen with metal brackets on either side that connect via screws to his leg braces which in turn keeps his legs aligned. Upon removal of the hip piece, he seems to sleep better with little disturbance. But, I just don’t see how it can make that dramatic of a difference. Especially when he says he’s not in pain (when I am able to get him to respond to my inquiries.) According to doctor instructions, he’s to wear the hip piece every night and Dr. Paley put the fear of God into me about Drew’s legs losing their corrected placement and reverting back to his internally rotated state so I’m not one to go against doctor orders.
I stewed in my anger for most of the night last night. Unable to help Drew. And, Holden wasn’t making it any easier since he seems to be 100% determined to slowly amputate my nipples. Here I am in physical pain and having to helplessly listen to Drew. Pain from braces, tonsils, night terrors, I don’t know what it is but I can’t even take it anymore. Last night, I had to escape the sound of Drew’s uncontrollable crying by going outside on my front porch just to get away from it. It reminded me of the time period in which we were doing adjustments on Drew’s left fixator in which we were unknowingly turning his foot the wrong way. Every night during and after adjustments, Drew would screech in pain and absolutely unbearable moaning for hours. Having reached my limit, I rushed outside our apartment and rested on the staircase in our breezeway to eat my dinner in peace and I sat on the step crying hysterically trying to eat my dinner at the same time. It was one of the lowest moments of our whole ordeal.
I sat on the porch, no longer able to hear Drew, and had this post all planned out. Except I slept on it and have since calmed down so now I can express my frustrations with fewer curse words.
In the end, I threw in the towel and took Drew’s hip piece off and what-do-you-know, he slept peacefully the rest of the night. So, doctor’s orders or not, I’m not putting that $%^& thing back on him.
Luckily, we are traveling to Florida for a follow-up visit with Dr. Paley on Monday so I’ll be very anxious to speak with him about this very issue. It will take everything I have not to throw it on the floor at his feet and demand, “Y’all gotta think of something different because this isn’t going to work!!”
As I said, we are preparing for a trip down to West Palm Beach this weekend. We saw Dr. Paley last in October. We were lucky enough to have happened to schedule that appointment the week of Fall Break for school and were lucky enough to have unknowingly scheduled this appointment on Spring Break. It’s just a shame that our trips to Florida on school breaks aren’t for beaches and clubs and amusement parks. They’re for x-rays and long waits in doctor offices. Although we will do everything we can to fit in some type of outing in the few hours we’ll have to ourselves. We will be flying once again through Miracle Flights who is providing this flight for us for a very small administrative fee.
In other news, we have had a delay in therapy due to insurance coverage. It seems that we have exceeded our limits through our primary insurance and the amount of red tape required to process therapy through Medicaid caused us to have a three-week absence from professional PT. We did continue some of his most important exercises at home, but even as stressful as it was to try to strong-arm Drew into cooperating at the PT office, it was a chance to get out of the house to new surroundings. Sometimes, the staff at MHUC are the only adult contact I have when Nathan is on the boat! But, we are back on track…for the next 3-4 months anyway.
Drew recently ran for Little Mister at his school, winning for his grade. He also performed a very cute science experiment act for a talent show. I was in tears as he walked to the center arena to accept his medal. Actually, he ran and my teary eyes only lasted for about a second since they were quickly overcome with extreme anxiety seeing him run so fast. I was on my toes in terrifying fear that he’d face plant the gym floor with his over-ambitious stride. He didn’t fall thankfully, but I’m sure that was another day shaved off of my lifespan from the overwhelming stress. I swear I’m doomed for stress-related heart disease before I’m 40.
All in all, Drew is going great (during the day anyway). I’d say that he now only uses his walker about half of the time. And, he may very well be free of it soon too. He just has to build some more endurance. Lengthy walking does wear him out. He could be in the coolest of rooms and he’d be profusely sweating. It’s hard to imagine how much work it is for him to simply walk. But, tired or not, he’s still so independent. Rarely will he want assistance. Unless he’s just maxed out, he bears through as much pain as he can tolerate and refuses to be carried. I have to admire him most for that. He chooses to fight and refuses to take the lazy or easy way out. It would be so understandable for him to ask to be carried during his moments of exhaustion, but he won’t do it. He takes a small break and gets right back up and goes for it. I can’t say enough how remarkable of a 6-year old he is. I don’t know if this was some type of evolutionary trait he developed or if he learned it, but I know he will go far and inspire everyone around him with that type of “go big or go home” attitude.