Wednesday, May 23, 2012

bye, bye nursing

So after numerous discussions over the weekend, we cancelled nursing for good. We might have to revisit that dreaded idea again when we decide on daycare for Wyatt but that's still 2+ years away. Instead of being upset or frustrated, we have always been excited when a nurse would call out sick or the agency couldn’t find coverage. I don’t think my personality is made for home nursing and when I’m stressed Wyatt is stressed. It’s just a downward spiral. I have always noticed a night and day difference between the morning hours for example when we had a nurse and the afternoon or weekends when we didn’t have a nurse present. Not only does the nursing agency/FL Medicaid put restrictions on what Wyatt can do, where he can go and when but I recognized that having nursing made me treat Wyatt differently, too. I don’t want him growing up defined by nursing. I don’t want him to start to believe that he can’t do certain things or that he needs constant supervision to do anything. He will know his limitations and may have to make modifications but I want him to know that he can do anything he want to do, whenever he want to do it. He can and should be just as independent as his brothers and I cannot stand for anything less. We haven't had a nurse since Friday and our entire family including Wyatt has been so much more relaxed and acting normal around each other again. No more house arrest for Wyatt (stupid FL Medicaid rules). We took Wyatt grocery shopping and to Grandma and Grandpa’s house. We took him to the park/playground and let him swing and go down the slide for the first time. We sat him in the kiddy pool on our back porch. We have been successfully sprinting him (taking him off the ventilator to let him breathe on his own while awake) several times a day for 30min-1hour at a time. And the best, most amazing and reassuring part is, we did all that without a single breath holding cyanotic episode. Just since Friday, since we haven’t had a nurse, he has even greatly reduced the number of episodes when it’s nap time and now settles down on his own and even just. That is so huge, I can’t even find words powerful enough to explain how big of an accomplishment, how big of a difference that is. This boy just needed his freedom and get out into the world. No more explaining to nurses and the nurse case manager why/when we spint Wyatt and why we don’t have an official doctor’s order for it to cover liability for the nursing agency. No more explaining why we won’t feed Wyatt exactly 150mL every 3 hours on the dot. No more making endless phone call to update everybody and their brother on Wyatt’s latest appointment schedule, new orders and discussions with doctors. No more overanalyzing every little fussy moment or changed ventilator need as being medically related without considering normal growing discomforts. No more treating our son like he’s sick and holding him back from doing normal growing up kid things. No more of that. What Wyatt does, how and when is back to being a family business only.
I wasn't sure of the cold water at first but boy, splashing everyone sure is fun.

I better hang on to dear life, Mommy might get too excited.

Crawling is optional when you can just stand?!

Better not drop me. I'm hanging on to my vent circuit just to be safe.

upcoming stoma reconstruction surgery

Wyatt’s stoma reconstruction surgery is scheduled for July 12th and will require a 3-5 days post-op hospital stay.

The enlarged skin growth visible in the picture was caused by a suture that cut his skin when he had his tracheotomy placed in July of last year. That tear in his skin created a larger than intended stoma meaning there is an extra opening behind that skin growth. ENT refers to it as a panhandle shaped stoma. In other words, a normal stoma is supposed to be round but Wyatt has a figure 8 stoma. During the reconstruction, they will ventilate Wyatt via intubation to get a clear view of the stoma. They will try to save as much of the good tissue as possible but will remove the excess skin growths and tighten up the stoma to make it round. The expected post-op procedures and discomfort level will be equal to having a new tracheotomy. Sedation will most likely be necessary for a few days post-op to prevent numerous cyanotic breath holding episodes caused by discomfort.

While we certainly don’t want to put Wyatt through another surgery, the enlarged stoma has only gotten bigger as he’s been growing. The air leak is getting worse making it impossible to know how well ventilated he truly is because we can’t be certain how accurate his daily reading are, especially his CO2 readings. The skin growth has gotten bigger over time as well and is often irritated. He has also been decannulating more frequently doing simple things like moving his head or coughing. We were giving it time to let him get bigger and more resilient but it’s simply not safe anymore and needs to be fixed. Our hope is that after the recovery period is over, he will be a lot more comfortable and we will be able to assess his ventilation more accurately. Once the air leak around his stoma has been minimized, he should be able to vocalize more again as well like he used to – fingers crossed.

Thursday, May 17, 2012


Alright CCHS family, I have to vent about my home nursing dilemma and I’m hoping you guys might be able to offer some advice. I’m so frustrated with nursing lately that I went through phases of anger, guilt and holding back tears today. Quick backstory.

When Wyatt was discharged from the NICU at three months old back in September 2011 we went home with nursing. We had a few good nurses but also had some experiences we could have done without. After some issues with the business ethics of the first home nursing agency, we switched to a new agency in November in a last ditch effort to give it another try. Even though the second agency was providing far better coverage and better overall service, by December we still went from needing a one week break from nursing to cancelling services altogether. And then came the Chicago visit. We were given the speech by doctors that by declining nursing services we were not acting in our son’s best interest and were not providing optimal care and safety. So after some soul searching we decided that maybe due to the negative business experience with the first nursing agency we didn’t give the second agency a fair shot and we agreed to start nursing back up at the end of February.

Well, here we are now and we are back to the same issues that bothered us about nursing from the very beginning. Aside from having a hard time finding good nurses who are willing to learn about CCHS and who can handle the unpredictability of this disorder, we’ve always felt uneasy about nursing for various reasons. From December to February our whole family seemed so much more relaxed and together without nursing. The obvious bumps in the road that come with home nursing are the loss of privacy and having someone else take care of your child. That never sat right with me and probably never will. My husband and I are both very involved in our son’s care and we don’t see it as burden. Of course, there are days when we get frustrated and we’re tired but we don’t consider it to be any more challenging than raising any other infant or toddler. We have always approached Wyatt’s care as family affair. In fact, one of my conditions of agreeing to return to home nursing was that we do not live our life depending on nursing coverage to make any plans such as doctor appointments, and that I will no longer make several phone calls each week to keep every case manager and nurse informed of ongoing treatment or medical order changes. I absolutely hate having to ask for a doctor’s order for everything we do with Wyatt. We made it very clear to the nursing agency as well as every individual nurse that comes into our home that either myself or my husband will always be there and that the nurse is only present as a second set of hands, and only in rare and brief occasions will the nurse get to take over complete care. Well, based on recent conversations with our nursing case manager, our outspoken and very involved approach seems to be limiting the agency’s selection of nurses that they consider a good fit for Wyatt’s case. Another recently discussed issue has been when and where a nurse can accompany Wyatt. Since our private duty nursing coverage is paid for through Medicaid, their guideline state that a nurse can only provide care within the home and to/from doctor’s appointments. We are expected to notify the agency every time we are taking Wyatt anywhere outside of the home and ideally the nurse would be cancelled in advance for that shift. I basically told them that these restrictions make home nursing pointless in Wyatt’s case. We the parents provide his care and having him on house arrest is not helping his social, physical or mental development. If we can’t have nurses sit with him in the backseat of the car for example when we want to go to the park, then what’s the point of having nurses? It’s hard enough living around nursing shifts but to have to ask for permission when and where I can take my son is just an unacceptable flaw in the Medicaid system. I want Wyatt to grow up to be independent and all he is learning so far is what he can’t do. I’m afraid eventually that is going to lead to him believing that he can’t do certain things or at least not without help. That’s bullshit. That is not how I raised any of my other kids and Wyatt will be no different. To top it off, our daytime nurse has been pushing my buttons lately by simply sitting out her shift at our house. She was great in February when she first started with Wyatt but has since lost that original enthusiasm. Wyatt doesn’t want to be near her now when he’s cranky so she has gotten more and more frustrated and I in turn have taken over even more to prevent Wyatt’s endless breath holding episodes. I have tried to explain to the nurse that this is normal baby behavior and that her getting frustrated is only raising the level of tension which Wyatt easily picks up on and therefore only makes matters worse. I have even given her hints on what to try to do to earn his trust but nothing has been working. Worse, over the last few weeks her frustration has led to her distancing herself to the point of slacking on her nursing duties. I even had to talk with the nursing case manager about the fact that she hasn’t been doing CO2 checks despite me telling her repeatedly that they have to be done. She also hasn’t taken any of our instructions on how to look for Wyatt’s cues to prevent episodes and when and how to intervene. When I spoke with the nursing case manager again today, I told her straight out that it seems that this nurse just doesn’t care anymore and no conversation is going to help that. I am done with her sighs and me explaining over and over again what to look out for, yet when I put tough love to use with Wyatt when I try to get to fall asleep by himself for example, she just sits there and plays with her phone instead of observing what I am doing to try to get to know his likes and dislikes better and to start picking up on his cues sooner. I told the case manager I cannot make someone love their job and I cannot teach her to want to get to know my son’s personality. She tried to tell me that during his four hour nap she couldn’t get access to do a CO2 check because he was sleeping on his stomach. She gave me that excuse even though I showed you several times how to do it and I even set it up for her and left the inline co2 monitor part in place already. But she couldn’t get to it in four hours? That’s called not caring. To push matters over the edge though ,the nursing case manager calls me back later today and says that she discussed these issue with the nurse and that the nurse said I am taking away her independence to take care of Wyatt. The nurse said to the case manager that she feels I have been increasingly frustrated, I am acting as if I don’t want nursing and that I am taking over more and more of Wyatt’s care and therefore she is unsure what I want her to do during her shift. Seriously?  Yes, I am taking over more and more because I can predict and prevent cyanotic episodes before alarms sound, whereas the nurse hasn’t applied any of our instructions and suggestions, she doesn’t do shit until a machine alarms at which point it is too late to prevent the cyanotic episode. So, excuse me for not just sitting back and watching her put my son through episode after episode. This is not like the first day of daycare where the child throws a tantrum and then gets used to it after a couple hours. We are talking about a child who does not know how to cry, who faces very real risks of further brain function compromise with each cyanotic breath holding episode. So no, I will not just hand him over to the nurse and put him through this, crossing my fingers that in a few days, a few dozen episodes later, he will simply get over it. Then the nursing case manager proceeded to ask me if I want that nurse to return tomorrow and simply shadow everything I do with Wyatt to give it another try. Their concern is that if I take this nurse of my son’s case then we have no coverage at all. No thanks, I don’t want coming back tomorrow because I cannot bite my tongue at this point. I have no trust left for this nurse and I have no patience left to be civil if she returns. I am perfectly capable of taking care of Wyatt and I don’t want her to stay on his case only to keep the agency out of hot water. Long story short, coming from the nursing agency, I’m one wrongly phrased word away from canceling home nursing altogether again. Based on my personality alone, I know I will never be comfortable with depending on or reporting to someone else about my son’s care. No one is ever going to know him as well as we do and no nurse will ever have the same sincere selfless drive for Wyatt’s best interest and safety as we do. I am so angry right now that I even have to put up with this and listen to these comments. I am angry at doctors for pushing home nursing on us when our gut feeling from the very beginning told us that it wouldn’t be the right decision for our family. I am angry that stupid bullshit like this still rocks me to my core and makes me doubt my parenting choices for my special needs child. I am furious at comments that indicate that a special needs child should be treated differently and that a special needs child should take advantage of special programs. Just because these programs and assistance like home nursing exists, doesn’t automatically mean it is the right or best choice for every case. It is not that simple. In the end it comes down to the parents deciding what they want for their own child’s care and future, how they want to raise their child and what works best for the child’s personality. I will not stand for being told how to raise my child or how much care to provide for him myself… I am not sure that after all this nonsense and unnecessary stress, I am even willing to start looking for another “good fit” nurse again. I think the nursing agency and this one nurse might be right about one thing, I don’t want nursing for my son.

Friday, May 11, 2012

success and revelations

I know, I know. I’ve been slacking with my blog posts lately. Honestly, I wasn’t sure what to write and I’ve been too tired to give it too much thought. And I don’t want to talk about the latest annoyances with home nursing, Wyatt's continuous stubbornness hindering the oral feeding and sprinting progress, the ongoing struggles with Wyatt’s blue spells and now temper tantrums leading to even more blue spells, or the promising yet disappointing new CO2Monitor. I feel like a broken record on these subjects. Let’s talk about something positive…

Well, last weekend my husband and I dared to get away for a couple days and we handed all the responsibility for all the kids, including Wyatt, over to Grandma and Grandpa. We picked the two older boys up from school a little early and were hoping to get out of town by 3pm when our nurse was scheduled to leave. Well, we underestimated the challenge of transporting everyone and everything for the short 3 mile car ride to Grandma and Grandpa’s house. Even our new minivan can’t fit six people, plus three days worth of supplies and equipment. So after a couple trips back and forth and everyone and everything was unloaded, we ended up just throwing our own luggage together and manage to leave by 5pm. It was a smooth ride after that and the two of us finally had random small talk again. This may seem boring and meaningless to most of you but to us, it is such a relief from the usual short and sweet dialog evolving only around the latest medical updates and kids related news. Since this was the first time that we went away overnight and considering it would have taken us a good 3 hours to drive back home if something were to happen, it was a bit nerve-wrecking. After all, this was a test for all of us. Wyatt is very clingy and we all didn’t know how he would react (a.k.a. how many episodes) especially when it was time to go to sleep. If he could handle staying overnight at Grandma and Grandpa’s, that would mean that we have found a greater state of normal again and it opens up the possibility of all the kids being able to have sleep-over every now and then instead of Wyatt being the only one excluded. Long story short, the weekend was a success!

The reality of what we all have been through in the last 11months definitely hit last Tuesday when I had a parent teacher conference with my 7 year old son’s 1st grade teacher. I walked into the conference with the urge to apologize for this being the first year ever that I haven’t been involved in my kids’ education. I feel so much guilt for not knowing what is going on at school for my 10 year old and 7 year old. Most weeks I couldn’t even tell you what their homework was, whether it got done or how they did on exams. I knew they were doing well based on their progress reports and report cards but we’ve been so busy at home that it often went unnoticed how much responsibility and trust we placed on them. Before I could even say anything at all to my son’s teacher she started out with complimenting my son on how polite and responsible and smart he is. I wanted to cry. He managed to be the best student in his class despite coming home to having to help take care of his 3 year old brother every day and having to learn to handle emergency situations with Wyatt. I can’t even express how proud I am of all my kids for taking life as it is and just rolling with it. My goal and my expectations have always been to raise my kids from an early age to be responsible, independent and well-mannered. Never could I have imagined that they would learn these skills from their youngest brother Wyatt.