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.