Sunday, December 11, 2011


Let’s recap. First and foremost, I want to thank everyone involved with Burritos for Wyatt. It is overwhelming to know how many people care and want to help in any way possible. Thank you doesn’t seem to be enough but it’s all I know to say. So, THANK YOU!!!
We have decided that we will be driving to Chicago. Financially it’s a toss between flying vs. driving so it’s primarily a matter of travel time. With February weather in mind, driving allows us to go at our own pace and take breaks whenever needed, we’ll have our own vehicle during the whole stay, have more room for all the medical equipment and my pumping needs, and avoid the potential risk for illness and infection which was our main concern with flying. Since we have family in the Chicago area, we’ve also decided to make it a whole family trip and use a couple extra days as a mini vacation so to speak since we all know that the chances of us traveling for a second trip again in the same year are minimal. To make this fun-filled family adventure possible, we have enlisted the help of grandma and grandpa to drive behind us in their own vehicle and help with the other three kids. It will be freezing cold and the five day hospital stay will be very stressful but on the bright side, we’ll see some relatives and maybe the kids will finally see snow. So that’s the plan. The only thing I’m still waiting on is confirmation from the insurance that they will cover this five day ICU evaluation and treatment and to what percentage. It’s being processed for pre-approval right now and we’re keeping our fingers crossed because it could be a deal breaker. So we’ll see.
On another note, if you followed our Facebook post you probably saw the lovely picture of one of our overnight nurses sleeping on the job. I won’t post the picture on here again but to all the other parents out there who depend on nighttime nurses, get a video monitor! It’s indispensable! We purchased one after this happened to us the first time back in September. We have the Summer Baby Touch which allows you to use up to four different cameras, zooms, pans, has a talk feature, and excellent night vision. We know use it daily at any time Wyatt is sleeping so we can always keep an eye on him. This is how the sleeping nurse situation went down: I had my alarm set for 330am to get up and pump. When I came downstairs all the lights were off and I could barely see that the nurse was in the rocking chair next to Wyatt’s crib. Speaking from previous experience, then entire downstairs house being dark in combination with the rocking chair being used, that just was not a good sign-hence the video monitors with night vision. So I went back upstairs to check the monitor to be sure and my blood pressure went through the roof. I woke my husband up also just so it wouldn’t be my word against the nurse. He ended up taking a picture of her sleeping through the video monitor. I had to go into my bathroom and brush my teeth just to calm down. When this happened back in September with another nurse, I made the mistake of confronting that nurse myself which is a no win situation. This time I called the nursing company, waited for the on call person to call me back and then simply woke the nurse up with the words “You have a phone call” and handed her my phone. The on call person asked her to leave immediately and she did so without saying a word to me. That was smart on her part because nothing she could have said would have made me any less angry and arguing would have only woken up Wyatt which then would have made the situation even worse. So needless to say, she left and is not to return. In fact, I heard that she ended up getting fired because we had proof that she was sleeping. The biggest issue now for us is, aside from building trust in nursing again, that she was supposed to be with us four nights a week so we have a lot of openings to fill. But I’m not too concerned about it. We’ve come to accept that we can and should not depend on nursing so we figured out a routine that works for us no matter what.
While we’re on the subject of home nursing though, we did just get word that our nursing hours were approved for an increase  from 10hours a day to 16hours a day from now until May when it will be time for reevaluation. Honestly, my husband and I were not too excited because it means we'd be switching from our 8p-6a shift back to 3p-11p and 11p-7a shifts. That's such a pain because we'll have to be home at 3p every day again and stay up until 11p or later for shift change and possible nurses orientations. We could play around with the hours a little bit and move them forward or backward but it still would mean that there will be no more spontaneous day trips. Family time is also so awkward with a nurse around even if they are in another room. We had just gotten into such a great rhythm with our 8p-6a shift. It’s just such a weird position to be in. I don’t want to be ungrateful but I'm so stressed over having nurses in our house during the day time again. At this point in time, I don’t feel like I need or want the help. Therefore, after tossing ideas and different scenarios back and forth, my husband and I decided that for now, we want to only keep our 10hour night shift of 8pm-6am.   
But let’s get back to the positives and focus on what really matters... We went on our first family grocery trip today! I know to most people this doesn’t really mean much and in fact, most parents would give anything to be able to go grocery shopping without their kids but to us, it was a big accomplishment. Wyatt was in the double stroller with all his gear and then we also had the shopping chart to push around. Based on the looks on other peoples faces, it must have been quite a sight. I guess we need to get used to people starring though. It’s not every day you see a family of six walking through the grocery store like it’s no big deal, yet alone a family of six where one family member is attached to a ventilator and to top it off, none of our kids were throwing a fit to get attention because that’s how we raise them and they know better not to do that.  Sorry, had to throw that in there ;) In all reality though, it’s hard to ignore the looks and it’s even harder not to respond. But ironically, it made me proud because most people wouldn’t have the guts to even attempt this. Wyatt did have one blue spell while in the store but thankfully noone walked by at the time so I didn’t have to explain why it was “ok” that my 6 month old was turning blue... Going to a restaurant, check. Grocery shopping, check. Date night without kids-thanks to Grandma and Grandpa, check... Wyatt is rolling back and forth so much by now that he even rolls himself from front to back in his sleep, whereas before he was never comfortable sleeping on his back. He also scoots all over the place chasing down toys, especially loving the mirror. His two bottom front teeth came through about a week ago and now the top two are ready to break through also, leading to him once again chewing on absolutely everything he can get his hands on. Yesterday Wyatt also discovered his toes and has started to play with his right foot. I’m waiting for him to try to stick that in his mouth. Sitting up on his own is still a struggle but we bought him a standup bouncy seat/activity center hoping that will help his abdominal muscles rebuild faster from when they were cut during surgery back in July.  I still have to put the activity center together but I will try to remember to post a picture once we put him in it for the first time. We also figured out that Wyatt apparently loves to chew on pretzels. I’m still hesitant to try the bottle because even with the Breastflow nipples the milk just comes out too fast. We know it’s not a swallowing issue though because Wyatt swallows just fine and in his sleep even has the sucking motion down. It’s when he consciously has to suck on a bottle he doesn’t know what to do with it and it becomes a tongue coordination issue. So if too much fluid gets into his mouth too fast, it’s still too much for him to handle. But Wyatt is showing a lot of interest in food now and actually gets mad if we don’t share food with him. So today I bought baby food of different colors and tastes. I’m hoping the thicker texture of the baby food will work better for him. The reason behind the different dark colors is so we can double check and make sure he doesn’t silently aspirate anything, meaning we’d notice the unusual colors when we suction him. I’m going to give it a try at his next feed at 4pm. It may take a while for him to figure out what to do with the spoon in his mouth, to keep the food in his mouth and to find a specific flavor he likes. But the way I see it, there is no better motivation for him to learn than being surrounded by the whole family at meal time and simply giving it a try. In other words, I’m not a fan of Occupational Therapy or just waiting it out for him to make the connection. Long story short, so far occupational therapy hasn’t done anything new that we hadn’t already tried and after the last session I was ready to call the quits. Our OT can only come once a week in the evening which is a bad time for Wyatt and last Friday that led to eight blue spells within an hour before Wyatt finally calmed back down. So, I’m taking it upon myself to try real food with him rather than just tasteless therapy tools. We’ll see how it goes... Speaking of taking things into our own hands. Wyatt has been doing amazing with sprinting as well. I can still only try it right after he wakes up and is the happiest but he managed 45minutes in the morning and another 30minutes in the afternoon yesterday with his Sats staying at 96 or higher! So we’ll keep at it, we just have to figure out how to break the news gently to our Pulmonologist since he has been hesitant to let Wyatt try. We have an appointment this Tuesday at which point I will also question him on Wyatt’s twice a day Pulmicort prescription which after two months of use has not made a difference. I’m probably not a doctor’s favorite patient/parent since I question them on everything they do and avoid medication if at all possible but hey, they get paid by me so they work for me. Tuesday is also the day Wyatt is getting his Bardex G-tube replaced with a button. I’m still nervous about that procedure since they have to sedate Wyatt but the current G-tube is become more of a problem even day, especially with leakage and skin irritation. Let’s just hope that Wyatt gets the hang of the feeding deal soon so the button will just be the latest baby accessory trend.
Well, that’s all I can think of for today. My apologies for jumping topics. The date night at my husband’s end of the year work party last night explains my scatter brained blog entry today. Or at least I’m choosing to blame it on that rather than my anticipation of joining “the point of no return wanna be young again group” when I turn 30 next month.

Thursday, December 1, 2011

almost, never, normal - such useless words

Almost, that’s such a strange word. The dictionary defines it as “very nearly” and “all but”.CCHS seems to be the very definition of the word almost. All looks normal by appearance but appearance can’t be trusted with CCHS. Wyatt appears healthy on the outside and from a medical disease kind of standpoint he is. He doesn’t have underlying lung disease or a weakened immune system or any other illness that could be treated with medication, but he has a life-threatening genetic mutation which makes him a medical mystery. If you read the research and the statistics you start to believe that it’s only a matter of time when other complications related to this autonomic nervous system disorder will surface. And since the research is limited to the few cases known, you end up desperately searching for answers to your never-ending questions, answers no one can really give you. All you get is gray potential risk factors of other issues that have surfaced in other CCHS cases. One can only take an educated guess whether or not those complications are due to CCHS. But to be on the safe side, it is assume that they are so we end up with a long list of regular tests and specialists. These medical specialists consider this such a rare disorder though that even they are left with only depending on test results but are left without a complete understanding of what or why things are happening. So you as the parent end up hoping that each test comes back normal without knowing what normal really is for a CCHS child. And then you wait for the next year to come around to do all these tests all over again. So what does it all really mean? The humanitarian in me says it’s research that will eventually lead to a better understanding of this disorder and therefore to medical advances. And while that is true, I’m a realist. So let’s be real and say out loud what no one else dares to say. I don’t care! Research is supposed to provide  a better understanding of how to properly manage this disorder. Managing this disorder from that viewpoint though means managing it medically to supposedly provide a better quality of life. The meaning of quality of life is very subjective though. And while I am a very factual person by nature, quality of life simply can’t be defined by objective tests. I cannot in my right mind define quality of life by being hooked up to dozens of wires during multiple sleep studies, by being exposed to more radiation in a year than a so-called normal person is exposed to in their lifetime just to accomplish all these advanced medical imaging tests, or by being obsessed over the smallest up to date research available in the hope that they’ll one day find a cure. To me that’s not the definition of finding the best quality of life. It’s the definition of living in fear of the unknown. I want my child to live a good life to the best of his abilities, whatever that entails. I want him to be treated like a human being, not like a medical guinea pig. I want him to live life to the fullest without worry of what the future holds. None of us are guaranteed a tomorrow so why are we so worried about trying to figure out tomorrow for a CCHS child? Any of us, CCHS or not, could develop certain serious medical conditions at any given time yet we all don’t just run out and get every test in the book done every year. It’s such a no win situation. If you don’t do the tests then you’re considered irresponsible because you’re not being proactive about the potential complications. Yet if you follow along with all the specialists and tests you end with 20 different opinions because no one really knows what they’re dealing with. That in turn then leads to you as the parent getting even more paranoid, over-analyzing everything and starting to assume every little weird thing is CCHS-related. At this rate, the stress level alone is more likely to kill us all. Where is that deserted island when you need it? Well, it’s December already, the year is almost over and Wyatt is almost 6 months old. Six months ago he almost died, yet here we are now dealing with teething, pulling hair, poopy diapers, and all the other fun stuff that comes with raising a baby. So I’ve come to the decision that for now I’ll go along with the tests and the specialists. But not for the glamorous reason of the greater good but for my own selfish reasons of needing to learn more about the cause and effect and the ins and outs of ventilator changes or medical supply options for example because that is what really keeps Wyatt alive each and every day. As a follow CCHS mom once said, most people fear for their child to ever be on a life-support machine but a CCHS parent is thankful for that life-support machine because without it, their child wouldn’t be here today doing all the silly “normal” child-like things they do. So I will try my best of living in the moment and not getting sucked into the never-ending discussions of grim possibilities because that worry will always be there anyway. I don’t need tests, specialists or research to remind me of what could go wrong. We could be driving up the Chicago to see that specialist to do to the right thing for the greater good, to do what we are supposed to do for our child and then end up getting killed in a car wreck as far I know. There are no guarantees for anything in life, not even for life itself. So what’s the point of all this worry? I’ll even push my own hard feelings aside and go along with the therapists and home nursing for now. But I have to be honest, I hate it with a passion. It’s not because the therapists or nurses are not good at what they do. I hate it because it’s a constant reminder that Wyatt is “different” or “special”, as most people refer to him now. They always say it with that expression on their faces like they feel sorry for us to be burdened by such a disorder. The nurses, while they mean well and the occasional breaks are appreciated, in some ways the simple fact of them being there is essentially saying the same thing. And as if to make themselves feel better, people also always say with those puppy eyed sad faces how cute Wyatt is. And then there is even the debate of how to teach Wyatt about his disorder as he gets older. On one side you want him to be as “normal” as he can be and fit in but on the other side, you know that’s not a possibility. There will always be modifications and precautions to everything he does. A simply thing like running around playing won’t be simple for him. His breathing rate and blood pressure for example won’t adjust to increased activity. When he gets tired he can’t just start dozing off because that could kill him. There can’t be unexpected cute naps in the car on a family day trip. Naps have to be planned with the ventilator attached to him as soon as he gets tired or else it could kill him. And that’s assuming he’s even able to come off the ventilator during awake hours when he’s a little older. Simple things like swimming or diving which are fun things for kids to do can be fatal for Wyatt. According to the specialist, these activities shouldn’t even be performed at all because if he holds his breath while under water, his brain won’t automatically send a signal when it’s time to surface and breathe again. Unless he learns to consciously take a breath every time, he would just eventually pass out in the water and drown. Judging strictly by appearances though, you’d never know the risk factors involved Wyatt will have to face each and every day. What people don’t understand is that he won’t show physical signs that something is wrong like you and me would. His skin color may not always change when his blood oxygen levels drop and/or his CO2 level rises. He’ll just look like any other cute baby dozing off at the preschool lunch table. Do I want to refer to him or treat him differently than my other kids though because of these precautions and risk factors? Do I want people staring at him because of his trach and ventilator? Do I always have to bite my tongue when it’s obvious that people want to say or ask something when they see Wyatt but they are just too scared to do so? So this goes out to those sad puppy eyed people and those worst case scenario medical professionals: Don’t you dare feel sorry for Wyatt or our family. There is nothing to be sorry for. Don’t you dare treat me like a naive parent just because I have chosen to push the grim risk factors aside and look at my child like a human being with feelings and dreams just like everyone else. In fact, I bet you our family knows more about how to appreciate life’s little moments than you do. Wyatt has already contradicted most of the early predictions of what he can and cannot do and feeling sorry for himself is not on his list of things to do in life. As far as I am concerned, he can and will do whatever he sets his mind to and in the end, what exactly that entails, well, that decision will be up to only one person - Wyatt!