accomplishments

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.

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!

trial run

Wow, what a difference a new nursing company can make. Since we switched Friday, we have had every shift covered and only one nurse called out due to a family emergency so far. Plus, this company actually sends nurses out to orientate with another nurse before they work their first shift with us and the nurses are on time. Staffing actually calls me with updates and asks for my input on how things went with new nurses. They also let me rearrange the hours to fit my needs, meaning if the usual 11p-7a night shift for example doesn’t work for us, we can move the time around if needed. It’s amazing. It’ll still take a little while to narrow down which nurses work best for us and get into a more set schedule but we already found a few nurses that look promising. So far we’re approved for 10hours a day by Medicaid but the agency is trying to fight for 16hours a day by doing a peer to peer which entails our Pulmonologist talking and negotiating with the Medicaid doctor. Quite frankly, I’m fine with 10hours a day because I’m used to our own routine by now and it’s difficult for me to have nurses around again. But we’ll see. To be perfectly honest though (and this is where I need to let off some steam a little), home nursing can be help and a curse at the same time. I know down the road I’ll probably be happy to have the help, especially when Wyatt is toddler age, but for now I’m not so sure. Sometimes nurses get in the way more than they are help. I am overly organized with Wyatt’s supplies and have daily needed items as well as emergency items everywhere throughout the downstairs area of the house. Well, the nurses per policy have to have an emergency to go bag. A new nurse was orientating yesterday and I had to bite my tongue. Nice lady, seems to be good with babies but the to go bag was an issue. See, I have a large zip lock bag hanging on the ventilator stand with extra daily supplies plus the Ambu bag, another bucket that goes with me everywhere I go in the house with daily supplies for care and emergency trachs, then the suction bag which has to go anywhere Wyatt goes also has daily supplies and emergency trachs in it, plus I have two other 7 day supply bags in Wyatt’s closet in his room with absolutely everything, not to mention the extra Ambu bag and O2 tanks in his room. So I am well prepared to head out the door at any time with everything I need. That nurse however wanted another separate bag that has all the (same) supplies that are listed on their emergency procedure paper. What made me mad and I had to bite my tongue was that she went into my 7 day supply bag and took things out to meet her paperwork needs. Now I have to reorganize things today and double check my bags again to make sure everything is where I need it and in appropriate quantities. That kind of stuff is just not going to fly. How many emergency bags can you possibly need? I got it covered! I don’t need someone retracing every step I take or changing things around on me. There is a reason why I set things up the way I have. I mean come on, look at the picture of Wyatt’s room.



right after building his room... all those shelfs and drawers are full with supplies now

Is there really any question that things are visible and readily available? That being said, last night’s nurse didn’t work out well either. Hovering is for helicopters, it does not have a place in this house. Despite me telling her that Wyatt needs a dark and quite room to sleep and that we do not do any hands on assessments when he’s sleeping except for hooking up his feed and a diaper change at 12am and 4am, she ignored that and woke him up several times to check his temperature, listen with her cure all stethoscope and to just routinely suction him when he didn’t even need it. What’s with everyone using the stethoscope all the time anyway? It’s audible and Wyatt will make it known when he needs to be suctioned. Anyway, when I held Wyatt to try to get him to go back to sleep, she kept asking every 15 minutes if I wanted her to hold him. Every time she came over to ask, he was almost asleep in my arms and then she woke him back up by talking and bugging me. She did that three times and this was at 1am. Needless to say, being tired and aggravated at that point myself, I finally snapped and raised my voice a little so she’d get the point that I meant it when I said that I didn’t need her help and Wyatt just needs to be left alone. I know they all mean well but when they don’t take my requests serious and insist on doing things their way, I just don’t have patience for that. Those types of nurses are simply not a good fit for us. I need the skilled but laid back kind of nurses who understand that Wyatt needs to be allowed to be treated like a normal baby and that takes priority over filling in every space on their nursing paperwork... Ok, I think I’m done with venting for today...

Overall, Wyatt is doing very well. He’s 15lbs 3oz by now and at that stage where he doesn’t want to miss out on anything throughout the day. He started this new thing where he’ll squint his eyes when he’s smiling now. I swear it’s his first attempts at flirting or trying to wrap us around his tiny finger to get what he wants. He’s so darn cute when he does it, too. And when you pair him with our two year old, man, they’re going to cause so much trouble sooner or later. He’s also scooting all over the place now and rolling back and forth. Sitting up on his own is still not possible because his head still gets wobbly from time to time but he’ll get there. He’s only 5 months old now, has a vent circuit attached to his neck and has a 98 day hospitalization delay start. I give him some slack for now. His front bottom teeth are starting to come up too so he’s chewing on absolutely everything all day long. It makes him a little cranky sometimes but it’s also kind of nice though because it makes it a lot easier to do his oral motor exercises. He’s basically volunteering for them. A couple weeks ago he didn’t cooperate doing his tongue exercises with his oral swab but I was eating pretzels at the time and he kept gazing at them. So I handed him one and what do you know, he likes it. So pretzels are our new oral motor tool. He’s progressing well with Occupational Therapy and I’m hopeful that once he’s old enough to eat actual baby food, he’ll get the hang of it soon. Until then though, we’re stuck with the G-Tube and we have to bring him in soon to get him switched to the button because his skin keeps getting irritate from the G-tube bridge. Next Monday, he has an abdominal ultrasound scheduled too to check for tumors of neurocrest origin. There is another case of a 20/33 CCHS boy who actually was diagnosed with Neuroblastoma and is undergoing extensive chemotherapy now. I think of him and his family a lot. All the CCHS associated risk factors are scary and will require yearly nerve-wrecking check-ups and tests. Finger’s crossed though, so far we’re in the clear. I have been sprinting Wyatt once or twice a day for the last week or so as well (letting him breathe on his own off the ventilator). The Pulmonologist is a little hesitant and hasn’t given the official order yet but Wyatt seems ready for it so I gave it a shot.  And he’s doing awesome with it. Right now, he can handle it anywhere between 15-30minutes before he gets tired. We have to let him start working that diaphragm and gradually increase the time frame. It’ll take time but we can’t wait for Doctor’s orders.  With a rare disorder like CCHS I’ve noticed that Doctors are often weary and unsure on what to do and try and when.  And that’s understandable when even the Pulmonologist only sees Wyatt once a month for 10minutes and can only go by numbers on a chart. I on the other hand can go by Wyatt’s cues, carefully chart everything we do with him, and then come back around and show the Pulmonologist what we’ve done and how it’s worked. It’s kind of backwards thinking but apparently, that’s the life of CCHS.

happily sprinting... it's so nice to hold him without the vent circuit getting in the way

Fundraiser

BURRITOS FOR WYATT  Wednesday, November 16, 2011  Longwood – 5-9pm – 2401 W. SR 434 (at Wekiva Springs Rd) 6-8pm balloon animals & face painting  Hunter’s Creek - 11am–4pm - 13651 Hunter's Oak Dr # 107  Orange Ave – 11am-2pm – 3154 S. Orange Ave (Nr. Michigan)  Winter Park– 5-8pm – 1955 Aloma Ave  Thornton Park – 6-10pm - 8 N. Summerlin Ave
Bring this flyer and proceeds from your purchase will be donated to help Wyatt who has been diagnosed with CCHS.

For more details about this event, go to http://www.facebook.com/pages/Burritos-for-Wyatt/272310646146841

My Wish List

Wyatt had his first GI doctor appointment yesterday. I have to admit I wasn’t happy to go in the first place which probably had a lot to do with my urge to tell them off. After all, initially we were told that Wyatt doesn’t need a GI doctor because surgery put in the G-tube and they’d follow-up on that and the Pediatrician could take care of feeding adjustments. Well, that apparently was BS because both of them didn’t want to stick with those responsibilities. Therefore, a GI doctor had to be added to our list of specialists. So we got there 5 minutes before the appointment, had to wait 15 minutes in the waiting room despite my request to wait in a separate room due to Wyatt’s risk of illness and infection, this being flu season and all. When we finally got into the room, it took the nurse another 10 minutes to come in to do her vitals, weight, etc which of course made Wyatt turn blue. He’s 14lbs 4oz by the way. Then we again waited for another 10 minutes for the Dietician to do her thing. She ended up saying that while he’s proportionate to his height, she’d like to increase his feeds by a total of 90 extra mL a day. Yeah, that’s not happening. He’s already getting 900mL a day right now and he’s been gaining weight like crazy since he came home. He gained over 1 pound in 3 weeks, then another 1 pound in the next 2 weeks. So let’s not jump the gun here and put more pressure on Mommy with pumping. “Oh, you can just supplement with formula”. No thanks. Yes, he needs to keep gaining weight but let’s not turn him into a sumo wrestler here. If he slows down on gaining weight then I’ll increase his feeds. We have plenty of appointments to go to where they check his weight to keep a good eye on it. Anyway, then after another 15 minutes of waiting the GI doctor finally comes in. Heavy accent, hard to understand which after waiting for that long only rubbed me the wrong way even more. So he proceeds to tell us that we really need to switch Wyatt’s current G-tube to a button within the next month. Wait a minute, surgery told us originally that switching him to a button was optional and they didn’t even want to do that switch in infants. Now we have the GI doctor tell us the opposite. Then he proceeds to say that it is an outpatient procedure requiring sedation. I’m sure the look on my face at that point was not pretty because all along we were told, it’s a simply procedure of just pulling the tube out and putting the button in, it could even be done in office. What the hell is going on? I didn’t say much at that point but I was starting to boil inside. How is anyone supposed to trust any doctor when they all just contradict each other? And then they explained that even when the child eats by mouth only, they like to leave the button in for at least the first 12 months of life just in case. The dietician proceed to tell us that Wyatt had a Nissen done so if he were to get sick, we could use the button to vent him since he can’t vomit and such. Now, I’m really pissed off. When we decided on the Nissen, we were told (and that’s what I read in research as well ) that while it’s more difficult, he would still be able to vomit. I know this sounds gross but it’s an important bodily function. Now the dietician is contradicting that. Apparently it comes back down to us doing our own research and making a decision from there. I’m so tired of this mess. My initial instinct is telling me, no way am I putting him through this so called “simple” procedure. CCHS kids can’t take certain anaesthesia medication because of serious risk factors and it takes them a longer time to recover from any procedure so it’s not a “simple” procedure. Not to mention the risk of infection going to an outpatient center and into surgery. If he doesn’t get the procedure done and the G-tube were to come out, a new one (we have a spare) would have to be placed in the ER vs if the button were to come out, it can be replaced at home. It’s a no win situation either way... That appointment put me over the edge yesterday. The stress is just overwhelming. Me and my husband even got into a fight over everything from nursing to insurance to the Chicago visit to the GI issue. I told him I’m done, I don’t want to take Wyatt to any more appointments or put him through any more tests or procedures. He replied by saying that I can’t be done. That’s the wrong thing to say to me when I’m pissed off. Don’t tell me that I can’t do something because then I will just do it to prove you wrong. Needless to say, I was in a really bad mood. What it came down to in the end is that my husband is working really hard to try to make ends meet and it’s been slow at his work, and my responsibility is to keep things running with Wyatt’s care. We both have our own serious responsibilities to try to keep our family afloat through all this mess but essentially we have been living in separate worlds lately. I can’t go back to work any time soon yet so that’s not helping financially. Looking at the trend in our claims, Wyatt will max out his private insurance by the time he’s one year old and then we’ll be down to only depending on Medicaid. I don’t have to say how crappy that will be. We want to take Wyatt to Chicago to see the specialist but we can’t do that until next year because of paperwork issue and because my husband has no vacation time left. By next year though we have to start over paying our maximum out of pocket expense for insurance to cover the 5 day ICU required for the specialist and that’s just not feasible by February, plus the travel expenses. Not to mention, we don’t know how Wyatt can handle the cold Chicago weather in February and the other kids can’t come with us at that time due to school, so we have to find someone to watch them and take them to school for that week. It’s just not looking good for that trip. I’m trying to see if we can postpone it to summer break instead. By then Wyatt will be due for all those tests again anyway and we may be able to take the whole family and turn it into a little vacation to see some family up there. I don’t know if it’s going to work though simply postponing the appointment because appointments with that specialist are hard to come by. I’m waiting to hear back from their office. I don’t know what we’ll end up doing. Nursing is a continuos controversial issue at our house, too. The official date to switch companies if everything runs smoothly is November 11th. I put the request in to have coverage for afternoons/evenings since that is when I could use the help. The nursing company said we’ll definitely be approved for 8 hours of coverage for sleep. We’re not so sure that’s what we want though. Wyatt sleeps through the night mostly and we’re planning on bringing him into our room upstairs at night. So I don’t know how we can work that out. The nursing company is trying to get 16 hours approved, 8 hours for night probably 11p-7a and 8 hours daytime. If we decline nights, I’m sure we’ll be cut down to 8hours total because I definitely don’t want 16hours covered during the day. I actually like having time to myself with Wyatt and even when all the kids are home, we can manage. We had to manage without nurses for a while now that I’m not sure I can handle them just coming back. It’s really hard having strangers come into your home, take care of your son and we’re supposed to just live our “normal” lives. What if we one day don’t feel like being home when the nurse is scheduled to arrive or if we want to go on a spontaneous day trip? It’s so confusing and so hard to adjust to but we’ll see how it goes with the new nursing company... I’m tired, and not physically like everyone assumes. I’m mentally tired. I’m tired of other people telling me what I need or what Wyatt needs. Wyatt and I need to be left alone, plain and simple. I need doctors to get their facts straight so I don’t have to do all the leg work and research to determine what treatment plan my son should follow. I need them to just let Wyatt be a baby instead of treating him like he’s sick. He’s not sick, he just needs ventilator support. He doesn’t need some fancy titled doctor to tell us when he should sleep, eat and poop. Wyatt is perfectly capable of doing that on his own. And I don’t need to be reminded by all the specialists that Wyatt is special. Yes, he is special but not because of his clinical diagnosis but because of who he is as a person. I don’t need people telling me that I need help taking care of Wyatt. I got it covered. He’s not any more trouble than any other baby. I need people to stop telling me that I need to just get some sleep like it’s some miracle cure. I don’t need sleep, I actually get just as much sleep as I did when my other kids were babies and definitely more than when I was pregnant. I can manage. And I don’t need a day to get out of the house and get away either. I don’t even like being by myself. Here is what I really need and want: I need Wyatt to be left alone so he can be a baby and explore the world on his own terms. I want an insane grocery trip with the whole family. I want and need to know that we can all fit in the car together even with Wyatt’s gear and that we can do normal annoying stuff together. I want to be involved in my older kids school stuff again. I want to be able to help them with homework even if they drive me crazy and argue with me the whole time. I want to have a sit down family dinner again on a daily basis and talk about our one good thing of the day. I want to do a whole family trip to the beach. The beach is my place to relax but I can’t do that by myself. I want to show Wyatt the beach and see if he likes it as much as I do. I want to see him watch the boys play in amazement. I want my family to get off their behinds when we’re home, turn the damn depressing TV off and go out and do stuff together instead of taking turns taking care of Wyatt. He doesn’t require taking turns, he just wants to be involved in everything. I want our one day a week family trip to Grandma and Grandpa’s house back. So what if it takes us an hour to load up for the 3 mile drive. The older kids go over all the time but they don’t even give me my hugs and kisses good-bye anymore. They are all ready and excited to go places with everyone but the one day I actually wanted to spend time with them and simply go to the beach, they whined and complained the whole time. I guess spending time with Mommy on the beach just wasn’t fancy enough. I want to stay home in February and spend time with my sister and mom who are planning to come visit. I don’t want them to just come and watch the kids for us so we can take Wyatt to the specialist in Chicago. What good is all the research and hope for future medical advances if we can’t enjoy life now? I want to be able to look forward to my sister and mom coming to visit since I only see them every few years. I want to have a night-time bed routine with all the kids and then have quality time with my husband where we don’t just talk about Wyatt’s care or financial strains or take shifts sleeping or silently watch TV next to each other... I don’t need help with Wyatt or sleep or a break to myself. I need my family back!!! I need to be able to live life with my family again!!!

How can anyone resist that smile?!

We've been passing a cold around in our family for the last one and half weeks. The 9 year old came home with it from school one day. Unlike me, Wyatt seems to be tolerating it relatively well with just a runny nose, an occasional cough and extra sleep. His Sats have been staying up so there’s no other intervention needed aside from extra saline updrafts and Tylenol every now and then. Now there is a pro to having a trach and a ventilator. A stuffy nose doesn’t stop Wyatt from breathing. In fact, not to be gross here, the vent blows the junk right out. (We have to keep a sense of humor around here.) Hopefully by this weekend, we will all be back to normal…
Aside from that, we're in the process of switching home nursing companies. We figure at this point, considering 8 out of the last 12 days were not staffed, it can only get better. Giving up on nursing altogether wouldn't be a wise choice. We don't really need it right now while Wyatt only eats, poops and sleeps but give it another few months and we'll wish we have that second set of hands when he moves around all over the place and may even pull on his trach out intentionally just to get his way or to see how fast we can run. I can't wait for the toddler years if he's going to be anything like our 2 year old… I did finally receive the AC Power Adaptor for the CO2Monitor and this month the supply order was actually right the first time. Maybe they're getting tired of me calling them every day to fix their mistakes. I'm still waiting to see if my insurance can just buy the blood pressure tubing and cuff though before moving any further with the DME company on that issue. We'll see. We may have to buy it ourselves if nothing else. Whether or not to switch DME companies, we’ll see how they cooperate this month before we make that decision. It’s just such a hassle But then again, our current DME company has been a hassle all along… Oh let’s not forget the fun from last night. Wyatt pulled his trach out in his sleep! Out of the worst possible times to pick for that damn thing to come out, in his sleep is just not good. I still don’t know how he did it. We check several times a day to make sure his trach tie is on tight. Now that he can roll over though, he only sleeps on his stomach so I guess a quick movement of his head from one side to the other with the circuit in just the “right” position where it’s slightly pulling, that could do it. The weird thing was that you couldn’t even hear that is was out. Normally it makes a distinct sound. He was sound asleep though, no weird noises were coming from his ventilator or himself, and suddenly his Pulse Ox alarm went off because his Sats just started dropping into the 80s. After a few seconds, he came back up to 100 so I didn’t think much of it. I checked on him and he wasn’t moving around which could have explained a false Pulse Ox alarm. But then a few seconds later his Sats dropped back down into the 80 again. So when I flipped him over, sure enough, the trach tie was intact but his trach was just hanging out on his chest. Way to get me to hold my breath at 1am, Wyatt. Aside from getting mad at me for waking him up, he was fine though.

Narrowing down the list of Specialists

Here are some updates from last week:

A 72hour Holter was done Mon-Thur last week by Cardiology. They'll call with the result within 10 business days. Unless something abnormal shows up on the Holter or there is a clinical change, we won't need a follow-up until April 2012.

Pulmonology is continuing the monthly Synagis shot until March (which we may need re-approval for from our insurance at some point). No ventilator changes yet until I am able to continuously monitor Wyatt's CO2 levels. Wyatt is still on Pulmicort twice a day per nebulizer and Pulmonology added an order of saline updrafts 3-4 times a day to try to improve Wyatt's thick secretions. They also typed up a letter/order requesting a back-up ventilator which our DME company (Children's First) is very resistant to provide.

Physiatry was happy with Wyatt's progress and told us that they had high hopes for him and since he’s meeting all the milestones so far, follow-up PRN only.

Early Steps has put us in contact with "Beyond Therapy" to provide Speech Therapy with Occupational Therapy (for Wyatt’s feeding problems) once a week at our house. They will try to bill insurance first though, then Medicaid if the request gets denied by our private insurance, and then if Medicaid denies it also it will then be covered by either CMS or Early Steps.

Nephrology explained that sometimes babies in the NICU have what they refer to as transient high blood pressure, meaning blood pressure readings could be high due to the stress of being in the NICU or simply because the readings were done during or after other assessments which can give a false high reading. They at this point do not believe that Wyatt has true high blood pressure issues and put in the order to check his BP twice a day on the arm and at rest. If his systolic runs >115 consistently, then we will have to call them back and go from there. If that's the case though, Nephrology does not want Wyatt on Clonidine due to the drowsiness side effect and would switch medications then. Otherwise, follow up PRN only.

Regarding Nephrology, Children's First – our home nursing, DME and pharmacy company- is not being very cooperative. Since Nephrology put in the order to check Wyatt’s blood pressure twice a day, Children's First is trying to put it through our private insurance to supply us with their blood pressure equipment and they are asking for a monthly rental fee of $300 from our insurance. I explained to them that I do not want to go that route since we have the donated Critikon Dinamap Plus which has blood pressure capabilities and all I need is the tubing and the blood pressure cuff. Children's First is not willing to supply that to me since the Dinamap is patient-owned and was donated and therefore, they are unsure of the maintenance schedule etc. I assume it's a liability issue, as well as financial motivation on their part. Needless to say, we are not in agreement. I am now trying to see if my insurance will let us purchase the tubing and blood pressure cuff out right, which comes out to a one-time fee of only about $65 instead of the $300 monthly rental fee for Children’s First equipment. I definitely do not agree with our current DME company charging insurance $300 a month for blood pressure equipment we already have. I do not want Wyatt's lifetime maximum insurance benefit drained for unnecessary reasons. I also tried calling the Co-Owner at Children's First about the AC Power Adaptor for the Capnogrpah CO2Monitor which I am still waiting on. She just transferred me to person in charge in Equipment who then said, she has to get with the sales person from Smiths Medical (the manufacturer of the Capnograph CO2Monitor). Apparently, we haven't gotten any further with that issue yet either. I explained to that person in charge of equipment that it has been months since the order for the CO2Monitor has been put in and now that I finally have it, I still can't use it to continuously monitor my son’s CO2 levels per order of Pulmonology. She said she'll put "urgent" with her request. I'm getting the feeling that they are intentionally dragging their feet on this issue for the same financial reasons. I previously explained to them that once I can use the portable Capnograph continuously which also has Pulse Oximetry capabilities, plus using the Dinamap Plus as a "stay at home" Pulse Oximeter, I will no longer need Children's First Pulse Oximeter and we won’t have to unnecessarily charge my private insurance the monthly rental fee anymore. They were not too happy about that request back then either. Children’s First only wants to use their equipment despite the fact that we already have some patient owned equipment. Sounds like bad business tactics to me… As if that wasn’t enough, when I called the staffing manager at Children's First to get an update on the nursing schedule this week, she casually mentioned that Wyatt is on a weaning schedule and that we will be down to 8hours a day as of this Friday per Medicaid. She said the Co-Owner is trying to fight for at least 12-16hours but if we do go down to 8hours a day it will be hard to staff since most nurses only want to work 12 or 16hour shifts. Quite frankly, I almost lost it on the phone. We were told that we were originally approved for 24hours the first 30days, then 16hours the next 30 days, and the 8hours a day per Medicaid but that they would continuously fight to keep the hours as close to 24 as they could get. That second 30 day time frame should not be up until the first week of November. All along I've been asking for updates on that and all I was ever told was that the Co-Owner is working on it and they'll let me know if we drop from 24hours. Last week was the first I heard that we're going down to 8hours THIS Friday. And to top it off, we never even came close to receiving what we were approved for in the first place. We didn't even have a nurse this entire weekend. In the beginning we were told there would be occasional gaps in service yet we haven't had a night nurse in weeks and days have been covered 8-12 hours a day maximum. Considering all these problems, I don't think Children's First understands, it's not just a nursing issue anymore. Strictly from a business perspective, our son's diagnosis makes us long term customers and the way they run their business is not acceptable. If we switch companies, we are pulling everything, not just nursing but also DME and pharmacy! My husband and I are willing to look into different nursing companies at this point if we can take one particular nurse with us. I have already contacted another home nursing agency and the local direction is coming to meet Wyatt by the end of this week. Whether or not we can keep that one nurse as our primary nurse will ultimately be up to her. I’d love to keep her but it’s not my place to ask her to switch employers. I’m crossing my fingers that she’s willing to do so but even if not, we can’t stay with Children’s First considering the way things have been going. I shouldn’t have to call every day to see who’s coming in the next day and not get a response back from them if any until 10pm, and I shouldn’t receive phone calls from their staffing manager on my phone when she’s trying to speak with the nurse we have working that day. That’s so unprofessional. Children’s First is making me want to give up on nursing altogether and when they can push my buttons that much, it’s time to fire them. The same goes for the equipment issues with them. Even though switching DME companies would be hard since we'll have to switch all the equipment out, I'm sure there is a better company out there who is willing to work with us in terms of patient-owned equipment, yearly maintenance checks, a back-up ventilator, etc. I’m already also pulling Wyatt’s prescriptions and switching to a local pharmacy. Unless the other home nursing agency has some major red flags (that tops Children’s First issues), we’re ready to switch! It’s down to us calling the quits on nursing completely which we would regret some day or giving it another shot with a different agency. I'd like to be able to start my business back up some time soon, even if it's just part-time.

Fun, fun

Oh boy, what a weekend it’s been. Our two year old developed hand, foot and mouth disease. It’s highly contagious through contact and presents with fever, sore throat, loss of appetite and itching/pain sensation in the hands and feet, which eventually shows with little red dots that will become blisters. Those dots turning blisters will then also migrate and spread to the mouth and randomly across the body. I have no idea how he got this strange disease since he’s basically home with me all day but it could have been as simple as a grocery trip or the movies I guess since anyone can be a carrier of the virus. It only turns into the disease in kids under five years of age. That being said, that meant we had to basically quarantine our two year old. We sent him off to stay at Grandma’s house for the expected 5-7 day course while we went disinfecting crazy around the whole house for five hours to try to prevent Wyatt from getting infected. Not my idea of weekend fun but hey, that’s our luck lately. It seems like we manage to keep it contained though as Wyatt has not shown any symptoms yet and we’re now five days into it. Keeping our fingers crossed and keeping the two year old under quarantine until he’s all clear. (I really miss him though!!!) Aside from that drama, we’re working on making arrangements to go up to Children’s Memorial in Chicago in mid-February to see Dr. Debra Weese-Mayer who is specialized in CCHS. It will be a five day hospital stay for extensive evaluation and to develop a more detailed treatment plan which will allow us as the parents to make ventilator changes ourselves as needed, as well as give our Pulmonologist a better recipe for treatment. How to get up to Chicago is the biggest issue for us, especially in the cold of February. Driving would be ideal to have our big truck for all the equipment needs but it’s a minimum of a two day drive with an infant on a ventilator who doesn’t even like the car seat. And when I say he doesn’t like the car seat, I mean he absolutely hates it and will show off with plenty of Smurf moments. Flying on the other hand poses the risk of being around crowds and potentially getting Wyatt sick. Plus, there is the hassle of getting through the airport and taking all his gear as carry-on. Driving or flying, both are expensive. So I am attempting to find a way to either get a reduced rate on a commercial flight or to go through agencies like AngelFlight Southeast or OperationLiftoff to arrange for a potentially free flight on a smaller plane due to medical necessity. There are definitely some road blocks I’m running into trying to plan this trip in regard to the documentation needed for Special Needs, but after a day of banging my head against the wall (and catching up on some sleep), I’m back in the game and ready to attack. We’ll get it sorted out one way or another. We will need to arrange for transportation and accommodation though when we get to Chicago. I hope that won’t be an issue in the middle of February in Chicago weather. We’ll see, we still have time to plan… From a strictly medical standpoint, Wyatt is doing very well right now. We found a great Cardiologist who did his homework ahead of time and right away arranged for a 72hour Holter Monitoring, which Wyatt is hooked up to now. I am nervous about the result though since Wyatt is at such a high risk of having prolonged sinus pauses which could result in the need for a cardiac pacemaker some time in his future. This yearly test will probably always be nerve-wrecking for me. Pulmonology is on top of their game and ordered an abdominal ultrasound to check for Neuroblastoma which Wyatt is also at risk for and we’ll have to check for yearly. A Sleep study was already done also so we have a better understanding now what his breathing capacity or lack thereof is during each stage of sleep. Once we go to Chicago, they will repeat those tests among others and look at everything in more detail. Early Steps also called me today and they found an agency that can provide a Speech Therapist who’s also trained in Occupational Therapy to come out to our house. It’ll still take a while to get services started but hopefully soon they can come by once a week to help work on Wyatt’s feeding issues. I’m still waiting to get an AC power adapter for the Capnograph CO2Monitor so I can continuously monitor Wyatt while sleeping and we can then fine tune his ventilator settings to keep his CO2 between 35-45. Can you believe it, our insurance bought the Capnograph out right but the DME company failed to check that it only comes with one battery and a battery charger. That battery only lasts eight hours and then I would have to turn it off until the battery is fully charged again. So stupid. Of course I need either a second battery or an AC power adaptor to be able to continuously monitor. So I’m still waiting on that. Another fun thing I’m waiting on is Wyatt’s monthly delivery of a new trach. The one thing we really need is on back order, on manufacturer back order none the less. Fantastic. There is no way of knowing when it’ll get here. It’s bad enough we only get one new trach a month yet his trach is to be changed once a week, so we end up having to sterilize used trachs and reuse them. But this being the middle of October and the trach is on manufacturer back order, I’d be really surprised if we even get a new one this month. See, it’s so much fun dealing with home health care. There is never a dull moment. Speaking of home health care, I’ve come to the conclusion that Wyatt and I just don’t like home nursing care. Given my personality of wanting to do everything myself anyway, the nurses will probably never be able to live up to my expectations of multi-tasking. And Wyatt at 4 months old only wants to be held by either myself or my husband otherwise he’ll have back to back Smurf moments. I tested that theory today and sure enough, even when he got really fussy and over-tired, he didn’t have an episode when I was holding him. But when I handed him off to the nurse while he was content, he immediately switched his mood and had an episode every single time I walked out of the room. Way to make me feel guilty, Wyatt. Well, him needing to be held all the time led to me becoming really good at holding him in one arm while doing everything else with the other arm, like suctioning him, hooking up his feed, venting his G-tube, giving him his nebulizer treatment, etc. The bad thing about me being able to do it all one handed now though is that I have also lost my patience for the nurses, for example when they take forever to get things ready to get out the door for appointments or they spill my hard earned breast milk trying to pour it into the feeding bag or when they can’t even figure out how to secure the ventilator in the travel backpack. I really am trying my best to accept that nursing is just part of our life now but it’s just not working well for me. I am always so irritated when we have nurses and so much more relaxed when we don’t. Not trying to offend any other nurses here but in our situation where we as the parents are so involved in everything about Wyatt’s care, home nurses are just a glorified and very expensive medically trained babysitter. That’s just my opinion though and I am kind of annoyed by them today so maybe it’ll pass. And it really ticks me off when they kiss on him like he’s their baby or something. Ok, I’ll stop now. I just had to get that out. Oh well, that’s it for this week I think. Wyatt has a bunch of appointments this week, six to be exact, but most are just follow-ups and then his usual Pulmonologist and Pediatrician appointment. Hopefully November will be calmer.

Hate the G-Tube

October 11, 2011

Oh, the G-Tube. Can I say that I’m annoyed by it yet? We had a surgery follow-up 2 weeks ago and the nurse practitioner told me that they have to wait at least 12 weeks post-op to switch him from the 12FR G-Tube to a Button (the surgery was July 19). Well, I got a phone call now saying that the surgeon is not comfortable switching infants to a button and that we don’t need another follow up appointment with surgery. Well, isn’t that great since Wyatt loves pulling on his G-Tube. Now I have to wait till Wyatt’s next Pediatrician appointment to come up with a plan of action. The Pediatrician gives us the guidelines for adjusting his feeds so we didn’t really need a GI doctor so far and weight gain definitely has not been an issue for Wyatt since coming home.  Now, if we want Wyatt switched to the button though, we apparently do need to add a GI doctor to the endless list of Specialists. Wonderful. Did I mention that I’m not a fan of doctors or the G-Tube to begin with? The G-Tube is such a controversy for me. I know Wyatt bottle-fed and nursed before being intubated and I understand that he lost the sucking instinct and has to relearn it. But I also know from a strictly muscular and coordination standpoint that he can do it. In fact, he sucks on his fingers now all the time and has shown no issues with swallowing. But I feel like with the G-Tube we’re just teaching him how to take the easy way out. He’s smart enough to know even at 4 months old when it’s time for the next feed. I hate the strict 4 hour daytime feeding schedule and the continuous nighttime feeds. What normal baby actually gets hungry on a consistent 4 hour daytime schedule and requires continuous nighttime feeds for 8 hours straight without a break? Some babies feed every couple hours and then sleep half the night without needing any food, or vice versa. How is Wyatt ever supposed to learn to wake up when he’s hungry and therefore have the motivation to try to bottle feed if we just always hook up his G-Tube feed when the clock says so, regardless if he’s sleeping or playing or being fussy at that time? It seems like we’re just teaching him to be lazy when it comes to eating. This kind of set schedule was supposed to get him in a daily awake/nap cycle but instead it has done the complete opposite. He just sleeps all day long now until about 5pm, only waking up when he needs suctioning or a diaper change. From about 5pm till about 10pm he’s Mr. Cranky Pants with several episodes and then around 3am we’ll have a hard time calming him down again (with several episodes) to go back to sleep. That’s not normal baby behavior. By the time he shows interest in playing it’s supposed to be time for his next feed which again makes him cranky and sleepy. I’m ready to throw that schedule out the window. As long as he still gets the overall total amount in feeds, I don’t see why he shouldn’t be able to give us cues on when he wants to eat and play and sleep. I know we can’t go cold turkey and expect him to suddenly go straight to the bottle but come on, let’s try to be as normal as possible and let him set the schedule. There's got to be a better balance between attempting the bottle and gradually weaning him off the G-Tube on his time schedule.

Tough Decisions

October 8^th, 2011

Let me try to sum up the last couple weeks. I’ll try to stay positive but it’ll probably turn into venting sooner or later because I’m exhausted so bare with me…Wyatt and the rest of the family have been doing well and we’re getting in the swing of things. All the kids are definitely interacting more and Wyatt looks for the boys now when he hears them playing. He even gets upset when he can’t see them or they’re too far away and not getting him involved. So we’re trying our best to either let the bigger boys play in Wyatt’s room or bring Wyatt into the living room and kitchen with us whenever he’s in a happy mood. It still takes two people to move him to a different room with the vent and pulse oximeter attached to him but even the 6 and 9 year old are learning how to help me out with that. Wyatt is now also to the point where he scoots around the whole crib reaching for toys by now and is lifting himself up more onto his arms and knees during tummy time. That’s huge progress for him in only 4 weeks of being home. He’s made progress with the pacifier, too. He still only chews on it but he tolerates it for longer periods of time and even holds it and plays with it by himself. He still doesn’t like trach care but really, who in their right mind would. On another good note, I actually get to see my husband again for a few minutes a day now and not just for our nightly shift change. That’s progress, right?! Our two year old is the biggest trouble maker right now. He’s in the middle of potty training and has no accidents when someone is individually with him all day. But once I’m busy with Wyatt, the 2 year old will intentionally pee right on the floor just as an attention getter. I had never experienced the terrible twos with my two older boys but man, child number three is definitely making up for it. I wish I could afford a nanny! Balancing all 4 kids is what gets to me the most. I feel guilty for not being able to help the 6 and 9 year old with their homework and asking them to take on caring for the 2 year old. The lack of dependability with home nursing is not allowing me any room to breathe. We have one really good nurse once a week now who will be taking on Wyatt’s care 3 to 4 days a week in November and she’s the only reason I haven’t switched nursing companies yet. Making it through October without yelling at the staffing manager is the biggest challenge for me. I literally have to call every day to find out if/who’s coming the next day and often times we have open days and they fail to call me back with updates. Nights haven’t been covered for over 2 weeks now since we fired the night nurse who slept on the job. My husband and I have good routine but it’s still so exhausting. To be perfectly honest, while we are getting into somewhat of a routine and Wyatt is doing pretty well, I’m running on fumes by now. It’s really hard to be up half the night only sleeping on a fold out chair and then not being able to take a nap during the day because I’m either on the phone for hours with insurance, staffing, supplies, doctors, etc which is putting my phone bill through the roof for the second month in a row, or I don’t have a reliable nurse meaning I’m still doing all the work. Aside from a grocery trip and Wyatt’s doctor’s appointments, I haven’t really even seen the outside world. I was planning on taking a day to myself and going to the beach this Sunday but those plans had to be scratched since of course the weather is all gloomy and rainy all weekend. Overall, having Wyatt home is still a lot easier than when he was at the NICU and we had to drive each day but I’m starting to question whether the home nursing is worth the trouble. Even when I have a nurse, I can’t relax because having home nursing also means you have to keep updating a lot of different people on Wyatt’s medical status after each appointment when really it should only be between my husband and I. It’s such an invasion of privacy and a huge headache taking time away from doing what I really want to do which is spending quality time with my family. I’m really on the fence about it. We just have to make it until November to get that one awesome nurse several days a week. We may decide to only have her at that point and manage by ourselves the rest of the week. We haven’t decided yet though. Another thing we have to decide is whether or not to go up to Chicago to see the CCHS Specialist. At first I really wanted to take Wyatt up there as soon as possible and so we made the contact and filed all the paperwork with them. But now that Wyatt is tentatively scheduled for February 13-17, 2012 and I had a chance to speak in more detail with the staff up there to find out what tests and assessments will be done, I’m not so sure anymore whether taking him to the Specialist is of any benefit. We finally have a good Pulmonologist here in Florida who is on top of it all and has experience with CCHS. Most tests that are done during the 5 day stay in Chicago have already been done, some multiple times. The few tests we’re missing will be done within the next 1 ½ months. Yet the Specialist’s office routinely wants to repeat all those tests and what’s worse, they don’t let the parents stay with the child through some of those tests. I’m not ok with that. I want to be with Wyatt the whole time for his sake and mine. And I have seen him go through a bunch of tests already and I can’t find a good reason to put him through all those tests again. I’m not convinced at this point that we should go. I know they do all the research up there and they are good at teaching the parents how to work with the vent settings but that’s not a good enough reason for me. I’m sure I can get our current Pulmonologist to teach us whatever we feel we need to learn and exposing Wyatt to the long travel and then all these tests again at such a young age just for the greater good of research does not sit right with me. Even the simplest non-invasive assessments are really hard on him and throw him into more breath holding episodes for several days. I can’t watch him go through this anymore. I don’t know what to do. I just want him to be left alone and be a normal baby having normal experiences and not be traumatized anymore than necessary. He has enough doctor visits and tests ahead of him as it is. Having good doctors on board is important but when is it too much? When should we as the parents step up and say that’s enough. After all, doctors only look at a chart but we the parents know our children best and know when things need to be addressed and when things are better of left alone. Are we at that point?

Close Call

We had a close call Tuesday night. Wyatt is fine now but I still can’t get that image out of my mind…

Wyatt had a good day on Tuesday. He was tolerating the bouncy seat and tummy time better than usual for a good 30 minutes each. We even practiced bottle feeding (a.k.a. chewing) for a good 15 minutes. Overall, his new schedule seemed to be working better for him and us, and everybody in this house had started to get into a good routine… But then came the sober reminder that things can go horribly wrong in an instant. My husband was still at work and I was eating dinner with my other 3 boys in the kitchen while the nurse was rocking Wyatt. I heard the pulse ox alarm go off which usually means he’s either having a breath holding episode or it’s just not getting a good read. When I walked in the room I heard a very distinct and familiar whistle-like noise. Wyatt’s trach had come out and the nurse failed to recognize that noise nor did she check. She just kept starring at the pulse ox waiting for his sats and heart rate to come back up. Turned out, she had attempted to do Wyatt’s trach tie change by herself. That’s why when he had his episode and the trach tie was loose, the trach ended up coming out during his episode probably when he was arching his back. I yelled at her that his trach was out and grabbed the supplies I needed to put it back in. In the nurse’s panic she ended up trying to wiggle the trach back in without supplies unsuccessfully and her hand just got in my way where I couldn’t see the trach site.  I told her to just hold him. Despite feeling a little resistance, I manage to get the trach back in. It doesn’t take long for the site to close off and I almost had to grab the emergency smaller size trach. But thankfully I managed. His sats came right back up to 100 and his heart rate was in the 150s but Wyatt was unresponsive. He had a blank stare, his tongue was sticking out a little with drool around his lips and he was completely limb. Normally after a breath holding episode he’ll have that blank stare while he’s returning to a pink color and his body will be stiff for about 15 seconds. But it was different this time. He was pink already, his number looked great but I couldn’t get him to respond. I gave him additional manual breaths through the vent because I did not want to let him ride on only the 30bpm back up rate his vent is set at And then I called 911 because he didn’t come out of this stare, he was limb. The nurse just kept saying “Why didn’t the vent alarm go off?”. She’s lucky I was more focused on Wyatt than her comments or I would have yelled at her so loud, the entire block would have heard us. I’m not a nurse trained on trachs and vents, and I’ve only been dealing with this for 3 ½ months but I recognize that distinct whistle-like noise. No matter how many times you’ve seen Wyatt’s breath holding episodes and are used to them, you never ever assume he’s just going to bounce right back. You always trouble shoot all the equipment, glaze at the vent circuit to make sure it’s all connected and look at his trach placement. And if he doesn’t come back up like he usually does, you always have to be ready to switch out his trach in case there might be a plug in it preventing him from receiving the breaths. You cannot ever depend on alarms. The pulse ox doesn’t even alarm until he’s already blue because there is a big delay. The vent won’t alarm when the trach comes out because the vent only has a disconnect alarm. Nothing was disconnected though so as far as the vent is concerned, it was still pushing air through. The air just wasn’t going into Wyatt. After the longest 5 minutes of my life, Wyatt finally come back around and started silently crying. By the time EMS got to our house, he was crying and responsive but I wasn’t taking chances. I directed the nurse to just keep holding Wyatt and trying to comfort him while I packed up all his gear. EMS wanted to ambu bag him on the way to the hospital and I had to set them straight on how this process was going to work. Ironically, the same EMS guys that came the day Wyatt was born responded to this call. Only this time they actually had respect for me and let me take the lead. You could tell they knew very little about the home vent. I had to give them the short version of Wyatt’s diagnosis and they got the point that the 911 call 3 ½ months ago after Wyatt’s birth was due to his diagnosis and not as they thought back then because Wyatt was born at home with a midwife. Even on the ride to the ER I was directing them on what to do and I what I needed. I was on the stretcher holding Wyatt in my arms to try to calm him down and the EMS guys made sure to place the vent between my legs so I could see it and work it if needed. Once at the ER Wyatt’s numbers were back in the normal range and I had to explain to the ER doctor to not be too concerned with Wyatt pupils being only minimally responsive as it comes with CCHS.  We were then transferred to Arnold Palmer Children’s Hospital for overnight observation. I must say, everyone at Arnold Palmer was amazing. As the leading children’s hospital in the region, they clearly had some experience with CCHS and were treating Wyatt appropriately (unlike the doctors at Winnie Palmer NICU across the street). It was close to 10pm when we got to APH and by then Wyatt was all smiles again and flirting with the nurses. Since we don’t have our CO2Monitor at home yet, I took advantage of our unplanned hospital stay and requested to put an in-line etCO2 on Wyatt’s vent circuit. He was reading in the low 20s which the RT was a little concerned with but I told them that before the pressure control increase on his vent, he used to be in the 70s. So I was ok with low 20s even though I guess it is considered to be the lower end of a good CO2 range. Weirdly enough, his CO2 was reading higher when he woke up in the morning, it was sitting around mid 30s. The RT said, it could have been reading a little low while he was sleeping because he has a significant air leak through his nose when he’s sleeping so it may not have been a true reading. I don’t know if that’s right or not. I have to trust the RT’s interpretation for now since I don’t know that much about CO2 readings yet. I’ll have to look into it more. By 10am Wednesday morning the attending doctor signed off on the discharge papers and we were back home by 12pm. Having only ridden in the ambulance with Wyatt so far everywhere we went, it took us a little while to get situated in the double stroller and then getting into our truck. But it was a nice first trial run - I’m trying to look at the positives here out of this whole mess. Of course, I had a stern talk with the case manager of our home nursing agency and made it clear to her that she’d better double check that all nurses coming to our house are adequately trained and that they are never to attempt a trach or trach tie change by themselves and that they are never to assume that he’ll just recover from his breath holding episodes. I expect them to always check his trach site and the vent set up during each episode and periodically throughout the day. Quite frankly, after Tuesday night, I was ready to say good-bye to home nursing altogether. I know it won’t be the last time for his trach to come out and it could have happened to anyone but for any nurse to play superhero and attempt risky things like trach or trach tie changes by themselves, that’s just unacceptable. I don’t care how much experience you have and how often you’ve done it one handed standing on your head. Wyatt is a strong kid and he’s managed to wiggle out of his trach previously even with the trach ties being thight. I don’t need superheros. I need nurses with common sense and the mind set to act when emergencies happen… Tuesday night was a close call. I know I can’t dwell on what could have happened if I didn’t step in the room but I can’t get that image out of my mind of Wyatt’s limb body with the blank stare. His sats and heart rate came right back to normal but he just wasn’t responding. There was nothing I could do but wait and hope and call 911. That helplessness of watching your own child go through that and there is absolutely nothing you can do but hope, it is an indescribably horrible feeling… But he’s ok now…