Teething is such a bitch. I don’t really remember the details for my other three kids aside from them being really clingy, so I have to assume it wasn’t too bad when they were teething. Wyatt on the other hand is miserable. For a kid who hasn’t figured out yet how to just cry, it’s been hell. He’s responding to teething just like most kids would. He’s clingy and only wants to be held by me (which leaves the nurses just sitting around helplessly). He wants to sleep but is too uncomfortable to get any good rest. And since he can’t communicate any other way yet, he cries. But of course in Wyatt’s case crying means a full blown episode each time. The biggest problem for a child with a trach is that teething causes more secretions, therefore we have to suction him more frequently. The strain of each episode unfortunately has the same effect and we have to suction him again after almost every episode. That in turn makes him mad and more irritable and here we start the cycle again. It’s a no win situation. I have lost count how many episodes he’s had daily for the last six days. He hates Orajel, so Tylenol has been our best friend. Tylenol around the clock though means it’s causing him some constipation. This poor guy just can’t catch a break lately. He has six teeth already and for one of them he was this miserable also. But of course given that only one of his six teeth caused him this much pain previously, we were hopeful that it might get easier with each tooth following. Wrong! Damn hope, I hate you! I disapprove of labels but there is a reason why I consider myself a realist. I look at things that are right in front of me to deal with but I also like to be prepared for the worst case scenario by doing the research or playing it out in my head. People call me pessimistic for thinking that way but man, it leaves so much more room to be pleasantly surprised when things work out better than you expected, instead of crushing your hopes that were statistically unfavorable in the first place. Apparently yesterday was a day for people to gang up and try to convince me to look at the best case scenario though. First our nurse kept saying that she’s hopeful that Wyatt will eventually grow out of this and learn to breathe better. If you’ve done the research on CCHS then you’d know that’s not in the roam of possibilities. Despite me telling her that it’s not an illness but rather a genetic mutation, that there is no cure for CCHS, and that he’s dependent on some sort of mechanical ventilation for life, she insisted that she will hang on to that hope of a miracle because she’s seen it with premature babies who were given a grim outlook. That’s not really comparable but reasoning with her was pointless. Her riding the subject when I had just finished bagging my son for the 8th time in less than four hours though maybe wasn’t the best timing to push the envelope. She’s a great nurse and Wyatt really likes her on his happy days but I don’t have patience for conversations like these. And then our DME case manager came by to once again swab out several O2 tanks. We went through four big O2 tanks this week alone just because of all the Ambu bagging. Of course, he had to mention that he just came from his other CCHS case. He mentioned how this child is four years old now and “running around like a normal kid” and that should give me something to look forward to. He proceeded to try to give me the positive outlook that this child is only vent dependent at night now and can move around freely throughout the day. He threw in there that this child also used to have blue spells but not as severe as Wyatt. He explained that this child’s version of a blue spell was a tinge of blue in the skin color from time to time but the airway never clamped off completely. I wish it were that simple with Wyatt. And I do have hope that he will eventually be able to come off the ventilator again while awake. But there is no way of knowing for how long of a time frame he can tolerate with his CO2 levels staying in range or whether he’ll ever be only nighttime dependent. As of right now, it’s not looking that way. It’s not in my nature to cling on to hope alone. If it happens GREAT but if that hope of a drastic change in his circumstances is the only thing I’m waiting for each day, I’m missing out on the now. I have to look at how to make life possible for him even if he stays 24/7 attached the ventilator with Oxygen requirements. Diaphragm pacers are an option but not a reasonable one until he’s about school age. And even then, they have their own set of issues and are by no means a failsafe option… On my lost in depression kind of days, I like to look at pictures or read stories of other CCHS kids and how they are progressing. But in reality, all CCHS cases are so vastly different, I cannot let myself get lost in comparing cases. I have to look at Wyatt and let him determine what he can or cannot do and when.
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