It was another incredibly rough night for B (and by proxy ME) last night with him waking and uncomfortable (kicking and thrashing) every 20 mins or so. I am usually able to 'go with it' when B has one of his 20 min waking nights but last night I was just so tired and so frustrated. I was patting his wee bum (which was the only thing to settle him) and my arms got so tired. I would fall asleep, standing there patting, and he would scream again startling me back awake and back to the pats. By 4am I was frustrated and annoyed and with any kind of frustration towards B comes all-consuming guilt. I know I'm just tired, I know he's not feeling well and I know that it will end at some point (oh how I hope) but when it's been going on for 5 hours straight it gets to all be a bit much. I know many of you will say that I am doing my best, which I appreciate but it doesn't assuage the guilt I feel. I guess it's not even really frustration with B directly, more of a frustration of life. Guess I just have to admit I am human.
People will often ask me how it's going and my usual response is how tired I am with B's lack of sleep. They will offer all kinds of helpful advice and antidotes of their own lack of sleep with their own kids but I don't think people really believe me when I try to explain how B truly has nights were he sleeps in 10-20 min increments and nothing/no one will settle him for long. Usually on those night I have to remove all stimulus from the room (including the light on his monitor) so we are in complete darkness and if that doesn't work then all the lights go on (it can 'shock' him out of the cycle) and I have to wake him completely and start from scratch (which usually involves him playing for a bit while I try to snooze). Needless to say, the sooner we get into the Sleep Clinic (to measure what is going on with his body at night), and the sooner we can deal with the reflux, ALL the better!
|B's self portrait today!|
On the positive side of things, I tried to grab a 'quick' shower (jump in, hope I hit all the important areas and jump out, hoping that feeling in my hair isn't conditioner I forgot to rinse), this morning when B started to retch almost immediately into my shower. I hop out, hair full of shampoo, dripping wet ready to vent him when I realized he'd stopped. Torin and Rylan had been able to distract him long enough for him to deal with the extra fluid in his throat. What amazing children I have! How many people can say that their 6 and 8 yr olds can handle watching their brother retch and not breathe properly while staying calm and trying to 'help' him by distraction? I a SO very PROUD of my children and their abilities to cope with the stressors in our house, they will be amazing men, I just know it! I had to decline but my sweet T did offer to vent B for me...did I mention he's 8?!
Thankfully T is seemingly on the mend although still has a very sore throat, and Ry is back at school. The great news is Heidi (new hire for B and T) is coming for a few hours today (first time) to stay with T so I can take B to his appointment. I am SO grateful for that as I can't take a 'sick kid' to the hospital but also can't bear waiting till the next time we can see Dr.B. It will be a nice opportunity for Heidi to get to know T without any of us around! She might be a bit talked out about phones/elevators and ceiling fans by the time I get back but I am thinking she can handle it! Did I mention how thankful I am for the people in our lives?
So much stress but also so much to be thankful for...
UPDATE: Our visit with Dr.Brindle went well and she wants to 'tread slowly' with B since he is so complex. We are going to give Domperidone (helps motility of the stomach/gut) a try to see if emptying his tummy faster will give him some reprieve. She's ordered a contrast test that traces the stomach and the gut with contrast dye while being xrayed (yes the same test that he had to be 'coded' after and yes, more exposure to radiation). We're also going to hopefully check in with our GI Dr for her opinion in the next week.
Dr.B is happy to do the surgery if that is in fact our best option but she is aware of how complex B is and that the last surgery was a 'virgin' surgery with no scar tissue and such. Fingers crossed that the drug will make a difference at least enough that B can be somewhat more comfortable. She told me that as long as all of the current issues weren't disrupting our lives to the point of being 'unliveable' (not sure how to quantify that at the moment), then we can keep him at home (and avoid a possible hospital infection). He's already had his first dose of Domperidone so my fingers are crossed so hard they hurt!
I am very relieved (not that I had a doubt) that Heidi is a good fit for us. When I was leaving for the hospital I said, "Thanks so much for taking care of my kid(s), guess I should ask your last name!" It is so funny but completely true when you hire someone to work with your special needs kid(s) you have to have a 'gut feeling' about the person(s) you invite into your home. We struck gold with Heidi, she and T donned "Super Hero" (0ur Autism Speaks) capes and went for a walk. I just wish I'd been here to snap a picture!!
No sure-fire solutions (not that I ever expected one) but all in all a good day since we are at least on a forward trajectory with B! The great news today too is that Dr.Fruitman called me this afternoon to let me know that Ry's Holter Test came back 'normal'. That is a great relief that his heart is strong! We don't have a reason for his bouts of chest pain and Dr.Fruitman will keep an eye on him but for now we can just proceed with life as 'normal' (whatever the heck that means in this crazy house!).
From Our (getting healthier) Home to Yours...