Nothing but boys

Oh boy, oh boy. There is never a dull moment around here. Apparently our entire family should start taking happy pills. There is the ten year old who is very self-driven, argumentative and a big time planner (much like myself) but who still hasn’t made friends with spontaneity or a sudden change in his plans yet. Getting him to be a kid and just play is the equivalent of torturing him so he’d rather do chores instead. Then there is the seven year old who is typically the one who makes everybody laugh, can change the mood of the situation (much like my husband) and tries to skip out on chores, yet he’s going through the me phase mixed with a lack of control of his emotions right now. Then we have the almost three year old who is a goofball, has a remarkable understanding of cause and effect and consequences of certain actions, which almost naturally now has made him an expert at taking advantage of that knowledge and changing the subject in an instant if needed. And then there is 10month old Wyatt who can instantly switch from having the biggest smile in the world to showing you his evil twin, topped with major stranger anxiety leading to clinginess right now. I love them, I love them, I love them… but boy are they driving me nuts sometimes. They have a way of either all tag teaming and everyone’s having a meltdown at the same time so that you can’t even get a word in and wish you had a freeze button. Or they will stagger their days so that by the time day four comes around your brain is simply fried. The biggest challenge is to NEVER let them know that they could rule this house if they actually put their heads together and planned it out just right.

I wouldn't change it for the world. They make me proud! (http://www.aprilsgrapevinephotography.com/)

hope vs reality

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

Let’s put my issues aside and recap what’s been happening on the Wyatt front.

As you saw in my previous post, Wyatt finally showed off his skills of sitting up on his own. I can’t even explain how much of a relief that is. As much as I know not to look at the time frame of milestones too closely, there is always that nagging question of how much of a neurological impact his daily struggles have. Having him finally sit up on his own unassisted and for over 30minutes nonetheless playing with his toys, that’s more than reassuring that he has his own plans of what he can and cannot do, as well as when and how he’ll do it. The coordination is definitely there and the rest of his strength will come. His well visit at the Pediatrician last week confirmed that he is gaining weight appropriately though he is short for his age and we will need to continue to keep an eye on his height progress. Otherwise, he is doing well and the Pediatrician switched him to once daily multi-vitamin with iron instead of a twice daily iron supplement. On the Pulmonary front, well, I haven’t made another appointment yet even though he was supposed to be seen by this week and get his last Synagis shot. Everything that needed to be addressed has been done through emails and phone calls only since his last hospital stay. Quite frankly, unless absolutely necessary I’m simply scared to get in a car with Wyatt again since our traumatic car ride home from Chicago. And my frustrations with the daily vent setting jeopardy over the last few weeks are making me less than patient to see another doctor at the moment.  Since Chicago about a month ago and Wyatt’s following illness, we’ve had ongoing frustrating trials of once again finding stable ventilator settings. After every attempt has failed to hold true for more than 24hours and Wyatt still having an increased number of episodes daily, we concluded the only thing left that was recently changed is the actual operating mode of the ventilator. CAMP switched Wyatt to Assist Control mode vs his previous settings in SIMV mode. In simple terms, in Assist Control Pressure mode the ventilator does all the work for the patient and provides the same amount of pressure with each breath as preset on the ventilator. In SIMV Pressure mode, the patient can initiate breaths on his own and the ventilator will only kick in to the preset numbers should the patient not reach the minimum desired pressure on his own or should he not take a breath within a set time frame. Therefore, Assist Control means the ventilator is in control of each breath taken vs SIMV means the patient is in control of when a spontaneous breath is taken and with what intensity (a.k.a. pressure). Wyatt has always been on SIMV for that very reason so that he can initiate breaths on his own and be in control of his own breathing as much as possible with the ventilator being his fail safe backup system. However, SIMV mode makes it a little harder to find a baseline ventilator setting because his CO2 readings won’t be as consistent if he is breathing over the ventilator. Therefore, we can only speculate that this is the reason why CAMP switched him to Assist Control mode to find optimal ventilator settings in the short amount of time that they had. So after ruling everything else out at home we came to the conclusion that this mode change is the only plausible reason left for Wyatt’s continuous discomfort. Therefore, we talked with our local Pulmonologist and switched Wyatt back to the SIMV mode. The difference was instant. He was suddenly laughing again and wanted to play instead of being clingy and cranky all day long. Why that thought never crossed our mind earlier, I don’t know. Regardless, we had finally found the underlying issue and fixed it. That said though, since the beginning of this week we are now battling teething again and therefore have again started a vicious cycle of numerous daily episodes and clinginess. Apparently this struggle is never-ending. Tylenol is our best friend but unfortunately Ativan had to be used a few times also. I hate Ativan and I really wish there was an herbal alternative for infants to ease anxiety and act like a short term mild sedative. It would be so nice to find a holistic pediatric doctor to consult with. When Wyatt is not teething however, we have figured out a pattern to Wyatt’s episodes. Teething discomfort aside, he seems to always be at greatest risk for episodes right towards the end of his (G-tube) feeds at which time he is also the most tired and gassy. We tried gas drops, gripe water, different formulas, different volumes and rates for each feed but nothing seems to be working. Sometimes just holding him in our arms until he falls asleep prevents the episodes but then other times he seems so uncomfortable and nothing soothes him that we are literally just an arm’s reach away from the ambu bag and O2 tank ready to revive him again. You feel so helpless. Again, I wish there were herbs for infants that could ease his feeding discomfort and let him relax enough to fall asleep without the drama. If anyone has any suggestions, please fire away.

Milestones

On March 19, 2012 Wyatt once again proved that he will do things whenever he feels like it. This is a picture of him sitting up for the first time unassisted. Not only was it his first time trying but he actually sat there continuously for over 30 minutes. He probably knew how to do it for a while already, he just never felt like showing us his skills up until now. Little stinker. Over the last week, he has also managed to learn to click his tongue which is even quietly audible, and I swear he is mouthing the word mama.

Thank you, Wyatt. I needed to see you do that. Despite all the worries about the possible negative neurological consequences of your numerous daily cyanotic episodes, you once again proved that you're in charge and worst case scenarios are just that.

counseling

Supposedly, admitting you have a problem is the first step. I was told that being able to come to that conclusion on your own also means you are not as crazy as you thought because truly insane people don’t know they’re crazy. So last week I reached out to a clinical social worker and made an appointment. Ok, let me clarify. Without giving out contact information, I emailed a few counselors to scope out the field and get details about how the sessions are set up, financials, etc. After a couple back and forth emails with one particular counselor, he must have looked me up in the phone book and called me back. So I gave him credit for making the effort and I met with him last Wednesday.

It’s a very strange feeling walking into a counselor’s office for the first time. I know people seek counseling for all sorts of reasons but for me, I always looked at counseling as a last resort that I would only use after I have exhausted all other options and I can’t solve the problem myself. And even then it’s an absolute last ditch effort hoping the counselor can somehow magically give me the answer that will make things turn around. In other words, I am more than skeptical that counseling will help me but I didn’t know where else to turn. Despite everything within me being against this, I made the appointment and showed up. I’m sure my outward first impression also gave off that vibe of me being very nervous and resistant. First order of business was the uncomfortable small talk, “Did you find this office ok?” I hate general questions like these. They seem pointless. And then there was the “How are you?” Did he really just ask me that? Why does he think I’m here? I bit my tongue for this typical everyday no one really cares about the answer kind of question and replied with the socially accepted “I’m ok.” I have come to hate that particular question most of all over the last nine months. As I entered the small office room, there was a corner desk to my right filled with a few files and books. Straight in front of me were a couple of chairs separated by a small end table that had a bowl of candy and a tissue box on it. The wall behind the chairs had an oriental room divider which I assume was there for decoration purposes only because there sure wasn’t any space left to divide. There also was what looked like a child’s painting on the floor next to the divider. I began to wonder what that child must have been here for. I took a seat furthest away from the desk and kept scanning the room. My thoughts were interrupted by the counselor asking me how I would like to pay for this session. I handed him my credit card for the $80 charge and explained that I would prefer not to use insurance to avoid anything going on my medical record. What I didn’t tell him was that I wasn’t sure whether I’d be back to see him again after this first session. He turned around to face his desk, leaving his back towards me, to charge my credit card and to input my driver’s license information. I continued to scan the room. On the wall behind me he had also placed a fake plant next to the room divider. I again caught myself wondering what that room divider was for. It appeared that he made a good effort to make his patients comfortable and relaxed in his office but to me it just seemed fake. I was staring at the door in front of me, tempering with the thought of excusing myself to the bathroom and leaving. But damn, I already paid for the session. The door had a white noise maker attached to the bottom vent to keep conversations confidential. Before I could hatch out my escape plan any further, he finally turned his desk chair back around to face me and attempted to break the ice by telling me that everything behind this door is kept confidential, unless of course there is reason to assume that I would harm myself or someone else or that there is abuse involved or other legal issues. Blah, blah, blah. I get it, he was covering his legal behind. Then he proceeded to tell me about his education level and his 35 years of experience and proclaimed to not have all the answers but that we will work together to find them. This all seemed like such a scene out of a movie. And then came the big question “What brought you here?” Oh boy, where should I even begin to explain the dramatic changes in my life that occurred in the last 9 months? I briefly summed it up by explaining Wyatt’s health complications immediately following his birth, his 98 days in the NICU, the rare diagnosis and his ultimate long-term medical needs, and finally his numerous daily cyanotic episodes which I was able to deal with before we went to Chicago but that are now putting me into a state of panic. Just as a counselor is supposed to do, he sat there, listened and took some notes. He was however unable to hide that facial expression that I have seen so many times before when I first talk to someone about Wyatt. It’s that expression of shock and disbelief and pity. Ok, maybe it wasn’t pity and it really was just heart-felt empathy but still, these expressions have no meaning in my book and only make me more uncomfortable and angry. He also took some notes about the family dynamics and the ages of my other three children. Then he asked me to switch seats with him and do a computer-based self-assessment to gage my emotions at this point in time and to then be able to revisit this tool every so many weeks for comparison to track my progress. That all seemed eerie as it is a similar approach to what I do when I first consult with a new client for Personal Training. The test was comprised of different questions regarding your thoughts and feelings and you had to pick an answer ranging from never, to rarely, sometimes, often, and all the time. Before even starting this assessment I knew what the result would be. Of course, almost all the questions are aiming at your worst feelings and thoughts as if this test is trying to put you back into that mindset. Big surprise, I scored very high on depression and anxiety, moderate on PTSD and thanks to a few positive questions geared toward whether I actually have happy days too, I also scored mild on bipolar. Stupid test. I began to wonder whether this session was worth the money spent. Of course the counselor responded by stating that he is very concerned with my high level of depression and anxiety and that “we” have to address that first before psychotherapy can be successful. He asked me what my stance is on medication to which I basically explained that unless I’m dying, which I’m not, I’m typically against medication. I also can’t afford to be dealing with side effects that could cloud my judgment and responsiveness toward Wyatt’s continuous needs. As an alternative which he claims is just as effective, he then stated that he has a holistic doctor working with him in his practice who approaches psychological treatments through herbs, massage and acupuncture among other things. This doctor currently offers a free consultation and would then charge me the same rate for future appointments should I choose to go that route. That sounded more along the lines of my beliefs and approach on things so I agreed to a consultation with that doctor for this Wednesday, right before my next counseling session. Unfortunately, that agreement already marked the end of this 50minute $80 session and the counselor ended our conversation with saying something to the effect of how courageous I am for taking care of Wyatt the way I do and that while it may only seem like something that I feel I have to do, most people wouldn’t do it at all. Again, one of those bite my tongue moments. I replied “Thank you!“ but I didn’t mean it. What I really wanted to say was that I’m sick and tired of hearing these comments. These comments are coming from a place of insecurity and fear in other people and it is not helpful to me at all. I would hope that if someone else were faced with a similar situation happening to their own child that they would also do the best that they can with the tools they have available. So telling me that I’m somehow doing more than other people would is bullshit and just another small talk kind of response, wanting to make me feel better yet only making things worse. What happened to being honest? If you’re uncomfortable, can’t relate and don’t know what to say, then just say that. I’d think far higher of you for being straight up honest.  

I’m sure you can tell by my writing style that I am struggling with the idea of going back for another session. I want to meet with the holistic doctor because I know from my own profession that good nutrition along with the right supplements can make a world of difference, not just in how your body feels but also how your brain functions. Counseling though I’m not so sure about. I don’t think this counselor is a good fit. I’m not even sure if counseling is for me at all. They way I see it is if someone you love dies, you go through the stages of grief but then eventually it gets easier and you move on with your own life because death is just a part of life. Now imagine having to face the possible death of your own child over and over again every single day. Imagine going through those stages of grief every day that your own child turns blue and lifeless and you have to revive him. Every time he has to go back to the hospital, you again start all over. It doesn’t end. How do you cope with that when there is no end in sight? What’s the sense in discussing different coping strategies to something that can’t be coped with because it’s never over? How can you even find a counselor who can understand what that feels like every single day? It doesn’t matter how often or how detailed I explain everything. Unless you’re living in my shoes, you can’t possibly understand. So how can you possibly help me?

So here is what I know I have to do.

1.       I have to let go of always being the one taking care of Wyatt. I have to ask for and accept the help available. Anyone who wants to help but is not trained in all his care simply needs to be trained.

2.       I have let go of the idea of being able to protect Wyatt 100% of the time. No one can do that and shit can happen at any time. If I can learn to accept that as a given fact then maybe I can finally shut my brain off enough to live again.

3.       I have to get my nutrition back on track. Good fuel put back into my body will give me the energy back to make it through the day, will help me to regain my mental focus, and to balance out all these brain chemicals controlling my mood and thoughts.

4.       Only after my nutrition is back on track can I consider working out again. As much as those endorphins would help my mood, trying to workout now as weak as I am with all the physical signs of depressions such as nausea and lightheadedness, it is simply not save. Nutrition has to come first.

5.       I have to keep writing. It’s my way of letting my thoughts and feelings out instead of everything spinning like a revolving door.

6.       I have to find ways that my husband and I can go out again by ourselves so we can find topics to talk about again that do not evolve around our daily struggles. My husband and I are both very good at always putting the kids first and making sure they each get their share of special one on one time. We have to put the two of us back on that priority list also.

7.       And here is the biggest challenge of all that will ultimately determine my success in all the aspects above: I have to learn to recognize the negative thoughts and feelings. If I can learn to acknowledge them as soon as they start creeping in, then I can learn to shut them up and make them take the detour.

Acceptance is hard

In just nine months, CCHS has tested us in more ways than anything else I could have ever imagined. I’d like to say that somehow all these struggles will turn us into more empathetic and live in the moment kind of people. While it is true that we all in our own ways now have a different outlook on life and approach things from a different angle, I’m also a realist and know that eventually we will go back to bitching about the little unimportant things in life. But that’s ok. I’m actually looking forward to that moment because it will symbolize that we have a reached a point in which CCHS doesn’t have to be the main focus around the clock 365days of the year anymore. While some people hang on to the hope of finding a cure, I’m simply hoping and smiling at the thought of eventually having those petty moments of creating our own useless non CCHS related stress and then realizing how stupid that is. That’s my overall goal. In all honesty, I do not believe that there ever will be a cure for CCHS. And before you jump to conclusions and label me as a pessimist, let me explain.

CCHS is a very complex yet little understood genetic disorder. So far nine (9) different mutation levels of this disorder have been identified through genetic testing, plus there is another disorder called ROHHAD that represents in a similar pattern but cannot be tested for yet. Within these nine different mutation levels, there are vastly different outcomes. Based on current research, it is unclear what pattern each mutation level follows in regard to the associated risk factors of cardiac rhythm abnormalities, cancerous and benign tumors, hypoglycemia, growth hormone insufficiency, vision problems, balance problems, learning disabilities, facial abnormalities, and the list goes on. Some CCHS patients that fall into the category of the most common and most studied mutation levels (20/25, 20/26 and 20/27) have everything imaginable to deal with additional to the breathing management, and then some CCHS patients within those same mutation groups have no other complications whatsoever. And then there are the CCHS patients with the higher expansion numbers (20/28 through 20/33) who have even less research to go by. At first it was theorized that the higher the expansion number, the worse the outcome. But then over time that theory didn’t hold up. Current data only suggests being proactive about screening for these risk factors but it cannot even give a glimpse of a future prognosis because each CCHS case known today is so vastly different. In other words, all we know is that these other risk factors were identified because they have been found in other CCHS cases, some of them more often than others. No one has an answer however whether theses other complications are truly CCHS linked or whether they are just another one of those winning lottery tickets. Chances are that if it has to do with the autonomic nervous system, it is probably linked somehow. All other risk factors though I personally am skeptical that they can be blamed on CCHS alone. Learning disabilities for example, any child can have those for multiple reasons. Cancer, well there has been so much research done in that area over the years and we still don’t know exactly what causes it. Vision problems are an issue for millions of people in the world… So I try to stay away from blaming everything on CCHS. With all that said, this is why I do not believe there will ever be a cure for CCHS. Even if research eventually figures out when and how CCHS is caused, there are too many mutation levels with too many variables in outcomes to find just one cure for every CCHS patient. Does that type of thinking make me a pessimist? I don’t think so. I’m just a realist who is trying not to miss out on what’s happening right in front of me at this point in time instead of being too pre-occupied looking and hoping for a miracle.

So in this never-ending cycle of the five stages of grief that the family of a CCHS patient has to go through, let’s talk about acceptance. (By the way, it’s a never-ending cycle because you go through it all over again each time you hit a setback or a hospitalization. Your only hope is that you start to go through this vicious cycle a bit faster each time.) Here is my first draft of a list of things that I cannot change:

1.       I have a special needs child. I hate that label but it’s true. There is no point in fighting it, it simply is our job as the parents now to make sure that this label doesn’t define who Wyatt becomes as a person.

2.       Standard programs for special needs children will not suffice. Being a mechanically ventilated child ultimately means it won’t be as simple as developing an individual education plan when Wyatt enters school. In fact, he may not have academic problems at all. Wyatt will need someone who can be his shadow. Someone who can stay in the background as to not interfere with his social development, yet always be close enough to intervene for medical reasons. It will have to be someone specifically trained to attend to his needs. At the beginning of each school year, we will also have to discuss his medical needs with his teachers and possibly parents of other children who will be in his class. We also have to be prepared to deal with prolonged medical absences from school.

3.       My child will always need mechanical ventilation. No matter what the medical advances may be in the future, our son will always be dependent on artificial ventilation of some sort. There may be better options applicable to him as he gets older other than a tracheotomy and a ventilator but none the less, he will never be able to be weaned off mechanical ventilation.

4.       We will always depend on number to know how our child is doing. CCHS means we can’t depend on physical signs and symptoms to identify when something is wrong with Wyatt. He won’t run a fever when he’s sick and just because his skin color looks good doesn’t mean his CO2 and blood oxygen levels are good. Objective monitors are the only way for us to know and he simply can’t live without those. It will always be a balancing act of keeping his numbers in check.

5.       We will always have to be ready to fight. Medical bills won’t go away. Arguments with durable medical equipment companies, pharmacies, developmental therapists, doctors, nurses, respiratory therapists, and other specialists are bound to come up every so often. Continued research and education on our part are a must. Getting less than adequate, quality sleep is a given fact. Always being on high alert for the next unexpected road block won’t go away either. These issues may space out a bit more over time (or at least I hope they will), but they will never completely go away.

6.       The never-ending yet unintentional comparison. We have four children but only one with CCHS, we have friends and family with children, and we see children of complete strangers everywhere we go. It’d be naïve to say that we are not going to compare Wyatt’s progress with that of other children. But I believe that’s a good thing because it’s a good challenge. It forces us to not give up and always reach for higher goals. We just have to learn to let go of a specific time table when he is supposed to do certain things, and we may also have to steer away from the normal ways of accomplishing these goals.

7.       We will always have to deal with the looks. No matter where we go, there will always be people staring or making comments without thinking. Most likely it is because they don’t know how to deal with the situation and it makes them uncomfortable. Either way, this is a tough one to deal with. Some days I want to say something sarcastic back and some days I’m ok with ignoring it.

8.       Its’ a lonely path. Being a parent of a special needs child is tough enough. Being a parent of child with a rare disorder that is not commonly understood is even harder. It doesn’t matter how detailed you explain what daily life is like, you’re still in this battle alone. You want to connect with parents of “normal” children but at the same time, it’s so hard to hear those parents complain about the normal issues of raising a child.

I am by no means claiming that I have truly accepted these facts, but maybe writing them down will bring me one step closer. It is no secret that the last few weeks have traumatized me and that I am struggling to get up every morning right now. I’m not ashamed to say that I am scared to be around my own son. I used to be able to handle his daily episodes but now each one of them sets me into a silent panic mode. The anticipation of an episode alone sometimes proves to be too overwhelming for me right now. My self-defense mechanism tells me to keep my distance from him to preserve my sanity should anything happen to him. I don’t have the option to stay away though which makes dealing with PTSD so much harder. There are no breaks. No one can just come in and take over for a few weeks until I can find my grounding again. Even home nursing can’t provide that kind of a relief. So it is up to me to somehow find a way to cope yet deal with the ongoing stress at the same time.

Clarification

Apparently my last blog post – once again - caused some misunderstandings and hurt feelings. Let me clarify some things for anyone who felt the same way but didn’t want to say anything out loud.

My blog is my outlet, my therapy, my best chance of sorting through this mess of a life and survive in one piece. It is the only way for me to talk openly about anything and everything going through my mind. In no shape or form do I mean to offend anyone or cause harm. Examples like my last blog post are not directed at anyone in particular. It is also not a reflection of how grateful I am for the kindness of other people who have been there for us every step of the way in this roller coaster ride. With each blog post, I am simply writing my thoughts down however they come out. I do not focus on what the specific topic is or whether I’m formulating my sentences in a politically correct manner. I always have and always will attend to things in a very straight forward, right in your face kind of approach. When I speak to someone face to face I often bite my tongue but on this blog, I don’t hold back. That said, I am not asking anyone to agree with me, to like what I wrote or to comment on it. It is your prerogative how you interpret the material written. I simply ask that you do not criticize me for using this blog as MY tool to be honest with MYSELF. This blog has saved me from many nervous breakdowns in the last nine months. By simply letting my thoughts ramble on, each blog post gives me the strength to sort things out and live another day. I’m in a rough patch right now (most likely not my last one). Therefore, if my posts seem controversial but it helps me to get through life, then you as the reader just have to choose ifr you can stick it out with me and truly want to know my innermost raw feelings.

I hope this helps in understanding my personality and my intent with this blog a bit better.

redefining life's purpose

As long as I can remember I’ve always been in search of the purpose in life. I’m a scientific kind of person, have never been religiously affiliated, and have always considered life to be one of those repetitive cycles. We are born, we learn to survive, we create and raise the next generation, and then eventually we die. Given that simple fact, I’ve always believed that it’s the middle that’s important. The purpose in life is what we make it. We can choose to simply exist or we can live to our full potential. What exactly that potential is depends on each individual’s beliefs about their own capabilities and goals… That said, I am now wondering what each member of our family is going to believe that their purpose in life is after everything we’ve been through in the last nine months.

When we were first awaiting Wyatt’s diagnosis, we heard a lot of well-meaning comments that all circled around the thought of how we are only given what we can handle, that whether we realize it or not there is a reason for everything that happens in life, and that Wyatt was born this way to do great things. To be perfectly honest, I envy people who can approach life’s challenges this way. But on the flip side, if these people were living in our shoes for just one week, would they still say the same? It would be so nice to have an answer for everything that happens to each one of us every single day. But the truth is (based on my beliefs) there is no underlying reason. Almost everything in life happens on the principle of cause and effect, and sometimes bad things just happen. The cause for Wyatt’s disorder is a defective gene and the effect is an autonomic nervous system disorder called CCHS. Nobody in our family did anything to deserve this kind of karma, no one is that special to turn such a diagnosis into eventual world peace, and we are certainly not made out of stone to let this level of stress just roll off our backs. It’s be so easy to say that we are just such great people that we were meant to have a life-support machine dependent child and he will make a difference in this world. But that’s just bullshit. No one should ever have to deal with this. There is no greater purpose here or karma or whatever else would make for an easy explanation. Does Wyatt have the potential to do great things in life, of course. But it isn’t because of his diagnosis. If he chooses to do great things in life it will be because of his own free will, because of his personality that will drive him to never give up until he reaches the goals that he sets his mind to. And the same goes for each member of this family. There is no rhyme or reason that explains why our life had to take such a dramatic turn. Shit simply happens. For lack of better words, it sucks but it is up to us now to redefine what we want this life to be like, what each of us makes our individual purpose in life.

Now I just have to figure out how this spur of a moment positive outlook can kick butt and erase all these horrible images of reviving my own lifeless blue child several times a day.

Instability

When I started this blog my intent was to keep a journal of everything that we were going through so that one day we could look back and realize how far we had come as a family. Approaching everything completely honest and letting raw emotions just flow onto the page also gave me a sense of relief, it was my outlet. Recently I noticed however that I have steered away from my original intend and kept the majority of my posts factual to what was going on with Wyatt.  I have pushed aside the therapeutic intentions of keeping this blog. Well, not today. Today’s post, as lengthy as it may be, comes straight from my head and my heart. Some of it may only make sense to me, some of it may sound harsh to other people but I need to let it out and not worry about how it sounds. So here it goes…

If you’ve been following along you know that the last few weeks have been nothing less than hell on earth. Our hopes of receiving better treatment for Wyatt by seeing the CCHS specialist in Chicago were crushed, then Wyatt got serious ill and required hospitalization, and now we are back home to pick up the pieces. I’m not sure what exactly happened to me personally in those last three weeks but for lack of better words, I hit rock bottom. I’m not certain what the clinical definition is of what I am going through but suddenly I can’t seem to cope with the simplest of daily tasks anymore. It’s not that I didn’t have bad days before where the stress of everything just suddenly hits you like a freight train and you grief the loss of your expectations of what your child was supposed to be like. But then you have a good cry and push forward. Well, lately those bad days have been piling up and I can’t seem to shake it. The other day I felt so overwhelmed at the simple task of deciding what cereal to buy at the grocery store that I started crying. Making even such an unimportant decision was too much for me to handle. Almost daily I’ll go into full out panic mode not even knowing why. I can’t figure out what to do with myself. I can’t sit still but I don’t have the focus to do anything specific either. Most days now I have no patience and no desire to be around anyone. I’m so anxious all the time and all I really want is to run away from myself. I’m angry at other people who have normal kids. I am resentful toward Wyatt that I had to give up my dreams, my business, all I ever wanted to do. I am deeply hurt that I can’t spend more time with our other three kids and have basically no idea what’s going on in their daily lives. I get angry when other people get to spend time with my other three kids instead of me. I am frustrated that no one can really understand what it takes to keep up with Wyatt’s medical needs and daily care 24/7. I’m tired of only thinking and talking about Wyatt’s needs…  I’m not sure what brought all this out now. My husband even asked me why out of a sudden I am so overwhelmed and freaking out about everything when nothing has really changed about who Wyatt is or how we need to take care of him. Logically I know he’s right. Wyatt is still our son and we know him better than any specialist in the world. But then there is the additional charting, home nursing again, the potential risk factors of CCHS were thrown right back in our faces as if we were too stupid to know what could go wrong, and to top it off we were told we should not hold our son to comfort him nor rock him to sleep and to “simply” blow in his face to stop him from having episodes. How dare they tell us how we should or shouldn’t raise our son. How dare they talk to us as if we didn’t know what CCHS means and what other risk factors are involved aside from breathing insufficiencies. How dare they talk down to us as if we were sitting back and throwing a party every time Wyatt had an episode. How dare do they put doubt in my head of whether I’m capable of taking care of my son? I’m so angry about the Chicago trip, I can’t even put down adequate words to describe it. What’s worse, I feel guilty for putting Wyatt through all those assessments that now proved useless and most likely led to his most recent hospitalization. Maybe his ventilator settings weren’t perfect and he was a bit overventilated before but at least he didn’t get sick and was happy. But we couldn’t just be happy with that, we had to push the envelope. There we went thinking some specialist could magically make things better. Instead, it ended up making Wyatt miserable and made him so sick that he was in critical condition for a few days afterward. We could have easily lost him. Just one episode could have pushed his little body past his limit… Maybe all the trauma from the last few weeks brought on my mental instability. Or maybe the last few weeks just finally pushed me too far. After all, I can’t get the images out of my mind when a few months ago the nurse didn’t realize that Wyatt decannulated and he had this horrible blank stare for 5 minutes that required me to call 911. And then there are the images of the numerous times when I’m staring at my own son who is blue and purple lying lifeless in front of me and all I can do is ambu bag him and hope he opens his eyes again. That’s all I dream about now when I can actually shut my mind off long enough to get some sleep. How often can a parent see their own child like that before going insane? My husband says maybe I still feel guilty about Wyatt’s diagnosis. My logical mind is telling me that there is nothing I could have done differently during pregnancy and it was just a fluke of nature. But maybe guilt is somehow still floating around in my mind somewhere. Thoughts of whether or not it was the right decision to even have a fourth child certainly have crossed my mind. And then there is the doubt of whether we are making the right medical decisions for him and what quality of life he will have being ventilator dependent. My family’s idea is that it’s all about how we raise him, the confidence, understanding and support that we provide for him. And while I agree with them, I can’t get rid of the fear of Wyatt coming up to us one day and questioning why we made these decisions for him and why we are expecting him to live like this. I don’t have an answer for those kinds of challenging questions because the decisions we have made with Wyatt go against what I previously believed in. Before having my own ventilator dependent child, I always felt that no one should have to live like this. As cruel as it sounds, I always felt that nature’s law of only letting the toughest survive was there for a reason. And then Wyatt came along and medical technology challenged everything I felt so strongly about before. Now we were faced with making decisions that no parent should ever have to make. How do you stand by your previous beliefs when it’s now your own child you are looking at and have to make these decisions for? My husband and I can’t talk about this subject too deeply because it just brings out too much pain and therefore leads to arguments. But these are the things I am struggling with every day. Up until now I have been keeping so busy that I haven’t had time to really let those thoughts and emotions sink in. But then the numerous cyanotic breath holding episodes happened for basically three weeks in a row. Having to ambu bag your own child that many times in three weeks makes you question everything all over again. Was this really fair to Wyatt to make him go through that every day? How will he develop neurologically with all these episodes? How much longer can his little body handle these episodes before we have to do full blown CPR on him? What will be left of my sanity should I ever have to do full CPR on Wyatt or even worse, if I am unable to bring him back from one of his “usual” episodes? Will our family even survive in one piece should something ever happen to Wyatt because even now we are sometimes hanging by a thread? Did we even make the right decision to have Wyatt trached and mechanically ventilated?... The hopeful side of me says Wyatt will prove us all wrong and shatter all those fears and insecurities one day and we will all come out stronger together. But even that hope can’t erase those thoughts out of my mind. I wish it were as simple as people say to just accept things for what they are and move forward. Unfortunately, that’s not how my brain works. And then there are the worries of how Wyatt will be treated by others. I also feel so guilty for putting our other three kids through this, even though I know it will make them more empathetic and generally turn them into better human beings. But I can’t help to think about how much they have to sacrifice for their little brother and how much of the precious time I am missing out on of them being innocent kids because I always have to put Wyatt’s needs first. I also miss my husband. We each had to take on different roles to keep things running but it seems we often live in separate worlds now. It feels like we lost that connection we used to have where we would always know when something is bothering the other person and we’d always find a way to talk to one another. Everything in our family used to be team work and now things - out of pure necessity - had to be split up. I’m scared that our family won’t survive this level of stress in one piece for much longer. I sometimes resent Wyatt for taking that away from our family. I know it’s not his fault or anyone else’s fault for that matter but those feelings are still there… I have good days with Wyatt too and then it seems manageable but every time he has another episode I become more and more distant. Some days I don’t even want to look at him or hold him. I’m so scared that something is going to happen that we can’t prevent or can’t fix… I miss the days before we had Wyatt. We thought we had problems then but in all reality, life was so damn good and simple back then.

the CAMP aftermath

My apologies but this is still a recap of what happened when we returned home after CAMP. Some of it is copy and paste from my brief Facebook updates to try to give a better insight into my emotions during that time…

It’s Monday morning February 20^th and we are finally back home. It should be a relief yet I felt overwhelmed. Was the trip to Chicago really worth it? There were so many changes made and I couldn’t shake the feeling that we came home with a different child and I had no idea how to respond to that. My gut is telling me that something wasn’t right. Wyatt still had more episodes than what would be considered his norm but we were still contributing it to the stress of traveling and all the tests he had just gone through in the last week. And then Tuesday came and still nothing was calming him down when he was awake. I lost count of how many times I had to bag him since the weekend and I was quickly approaching my breaking point. This was not my son. He doesn’t normally act this way. Something is seriously wrong. When we went to the Pulmonologist appointment that day and tried to sort out all the different recommendations and assessments that were done in Chicago, we explained to them that something just wasn’t right. We told them that we thought Wyatt was getting sick in Chicago already and explained his odd behavior and the numerous episodes. After tears and weighing out our options, we made the tough decision to have him admitted to the PICU (Pediatric Intensive Care Unit) right away. We all agreed that it was safest for Wyatt to be sedated for a few days to prevent further episodes and to be able to narrow down what type of illness or infection we are dealing with. The rest of the day was kind of a blur. I remember bagging Wyatt in the ER while the resident was trying to talk to me to get his history before he was moved upstairs to the PICU. I also remember having to explain CCHS a few times to the staff and emphasizing that objective monitoring is the only way to know what his true saturation and CO2 level is. I had a hard time keeping it together. My husband was there with me and so was our two year old. Our other two kids were in school. Adrenalin was the only thing that kept me from hitting the floor and breaking down. In the middle of trying to get Wyatt set up in the PICU we also had to figure out who would be able to stay with the older kids when they got home from school since the hospital was an hour away from our house and how to keep our two year old occupied with us. Thankfully Grandma and Grandpa are always there when we need them. It was such a mixed feeling to leave Wyatt in the hospital that first night, especially just coming back from a voluntary hospital stay. He’s our son and we are supposed to take care of him and protect him. Leaving him there by himself was such a guilt trip. But at the same time it also felt like a big relief. I knew he wasn’t safe at home right now and the PICU was his best option. We were all so exhausted it was a relief to know that we could leave him where he’s continuously monitored and we in turn could try to catch our breath. I couldn’t stand the thought of bagging him even one more time.

The next few days I was on autopilot just rambling off CCHS facts and what should be done for monitoring and treatment. It was to the point that the doctor’s asked me to participate in rounds every morning so they could find out what’s baseline for Wyatt since CCHS means they can’t judge by typical physical signs and symptoms. To some degree it was liberating and comforting to finally find a hospital that was willing to listen to the parents and work together as a team. But on the other hand, I didn’t even realize how exhausted I was. Doing the doctor thing every day didn’t give me a chance to deal with the emotions of what was happening to my son. I had a hard time even being next to Wyatt in the hospital. Each day he was there it became harder for me to make the drive to the hospital. It was such a déjà vu from the time he was in the NICU. I felt useless being there because he was sedated and there was nothing I could do to make him feel better. Every morning I got myself a coffee and hung on to it to calm my nerves. I didn’t even want that coffee but it was the only consistent thing I could count on every day. Everything else was questionable and to painful to even think about. So instead I dove head first into the ongoing mess that the insurance switch had caused beginning of February and dealt with the process of switching DME companies, finding a new pharmacy, and getting the home nursing going again. As long as I kept busy I didn’t have to deal with useless emotions. Meanwhile, Wyatt was kept on sedation for several days with IV antibiotics and we were waiting to get the trach culture back. They were treating him for severe irritation in and around his trach site and determined that the TTS trach was the most likely cause for the irritation. Therefore the first order of business was to switch his trach back to 4.0 NEO flextend cuffless Bivona while we were awaiting the delivery of the custom flextend cuffed trach. This is when the anger started to set in. All along we were trying to tell CAMP that a TTS trach would not work for Wyatt but they refused to take our input seriously. Now here we are back in the hospital and every single doctor that has seen Wyatt here, including our local Pulmonologist and an ENT consult, agreed that Wyatt needs a flextend trach. Why was CAMP so adamant about using a TTS trach that obviously is not designed for infants with no neck? If that is the only method they always use to do their evaluations then maybe they should consider that their way may be ideal for their testing environment but it is not realistic for daily application and therefore does not provide a true analysis and assessment. Having a different trach now also meant that the ventilator settings had to be changed again. Wyatt being sick also changes his CO2 levels and his Oxygen needs. So basically we started back from scratch trying to figure out optimal ventilator settings and trying to figure out what the heck was wrong with our son.

Day 4 in the PICU, Feb 24th: It took a couple days of being on the antibiotics before Wyatt was starting to act more like himself again. He is still kept under some sedation but woke up enough without crying/blue spells to pull and chew on wires. His eyelids unfortunately had been swollen shut since starting the sedation and he was still on a higher pressure setting and needed increased O2. Today I finally felt like he has starting to turn the corner in the right direction. It was touch and go for the last few days to the point of me not knowing whether I was going to walk into the PICU one morning and hear that they had to do a code on him. The trach culture came back with pseudomonas so they switched the antibiotics to better treat it. They also found that he's anemic and they started him on an iron supplement. Progress is slow but we're finally getting somewhere. ENT was consulted and is concerned that Wyatt may need a small stoma reconstruction in the near future but only after his acute symptoms are taken care of and he is off the antibiotics. (When Wyatt first had his tracheotomy, a suture cut his skin and created a bigger than intended opening around his stoma.) I can’t tell you how relieved I was that we finally spoke with ENT. Pediatric surgery did the tracheotomy and ENT was never followed up with since. The problem with the suture was never addressed by Pediatric Surgery despite us asking about it in the past.

Day 5 in the PICU, Feb 25^th: I said it before, Wyatt is showing us all off. He can handle more than I thought humanly possible. No doubt some of these issues could have been prevented medically speaking but it seems we have a good team of doctors now who are willing to listen and learn. Today’s goal at the PICU is to wean him of the Medazolan drip and use only Ativan via G-tube as a mild sedative to try to cut down on the blue spells. Hopefully that will also help to cut down on the swelling in his eyelids since discontinuing the drip should allow him to start to be more active again – fingers crossed. I’m rounding with the doctors daily and it sounds like he’s back to his usual crabby stages around 530/600am and 530/600pm which for him is baseline. So they are happy to see that progress. He’s back down to pressure control of 18 and FiO2 of 30% which is pretty close to his normal at home ventilator settings that were just established at CAMP last week. The peep of 5 was never changed. So the goal for today is to get him back on his LTV 1150 home ventilator and try him on his regular settings and hopefully also get him back to his normal O2 needs.

Day 6 in the PICU, Feb 26^th: I requested that the PICU doctor speak with Dr. Weese-Mayer in Chicago to get better details on what assessments were done there, as well as get input on optimizing his ventilator settings now. Unfortunately, even though they spoke with her, I was told she didn’t really give them much advice on Wyatt’s current ventilator setting needs. My attempts of speaking with her directly were also not successful. I was only able to speak with one of her RTs who inform me that they cannot advice us on ventilator settings now that Wyatt was switched to a different trach. I was furious. I wanted to strangle her through the phone. Basically she just told me that the five days at CAMP were now useless because they used a TTS trach there and didn’t listen to us when we asked for a flextend trach, and now we were on our own. I told the PICU team that I was not comfortable having Wyatt discharged until we can come to a better understanding and agreement on what his current ventilator settings should be before discharge as well as after. I also made it very clear that I did not want him on a regular scheduled dose of sedation. A PRN order is fine for the days that he simply won’t come out of that cycle of back to back episodes but otherwise, we need him to be fully awake and functioning so he can make developmental progress as well. We are not quite on the same page yet with our Pulmonologist on what level of medication is necessary to minimize the episodes. So the plan for now is to wean the Ativan and Chloral Hydrate further but unfortunately it is still necessary on occasion to fight those damn back to back blue spells. A bronch (without sedation to try to provoke an episode) is supposed to be done on Tuesday to see if a higher PEEP might minimize the severity of his episodes. We are eager to get him out of the hospital and finally off all sedation again but are curious of the results of the bronch to finally find out if something else is causing them or if there is a way to minimize the severity. The PICU team here has been amazing and I’m grateful to have a good hospital to go to in cases like these but I haven’t seen a true wide eyed smile out of Wyatt since we went to CAMP two weeks ago. I want my son back.

Feb 27-29: The bronch unfortunately only revealed that Wyatt is simply very good at clamping off his airway when he gets mad. They increased the PEEP from 5 to 10 and it only made a very slight difference. Right after the bronch Wyatt proved to us that he can still desat just as low with deep cyanosis followed by him passing out and he still requires the same amount of time to recover. Therefore, the PEEP of 10 is simply a preventative measure so that his lungs don’t collapse during each episode and then get damaged when being forced back open during recovery. It was very disappointing to not get a clear cut answer, some miracle diagnosis and treatment that could make these episodes stop. When I saw him go through yet another episode right after the bronch it hit me how much I was hoping for some way to fix this dangerous issue. But there is no magic fix to his episodes. I guess what they said in Chicago is right, he is the worst case of breath holding episodes they have ever seen. Which brings back up the controversial question of whether to use some sort of a maintenance sedation medication, kind of like an anti anxiety drug. I honestly don’t know what to think about that. I don’t want him to have any more of these episodes but I also feel like sedating him every day is the equivalent of pulling the plug on the vent. He can’t live his whole life sedated just because we are scared of more episodes of which we don’t know the neurological outcome. How do make such a decision? Parenting kids without health issue is hard enough but damn it, no one can ever prepare you for having to make decisions like these. In the end we decided to go home on a PRN only order of 0.25mL of Ativan via G-tube. I can’t say that I’m completely on board with that decision but I also know we need to have something readily available that we can give him on his bad days. We were discharged with a fixed vent setting of pressure control of 14, peep of 10 and a rate of 20. Bringing Wyatt home again was déjà vu. It felt like the first day when we finally brought him home from the NICU. It was exiting and scary all at the same time.

CAMP recap

A lot of people have been asking how the evaluation at CAMP went (Center of Autonomic Medicine in Pediatrics at Children’s Memorial Hospital in Chicago, IL). It was a very long and hectic week, a lot of changes were made and unfortunately, some unforeseen events happened immediately after we returned home. Aside from a few Facebook updates, I haven’t had a chance to gather my thoughts and write a detailed blog post. So let me try to sum it all up now.

The drive to Chicago: We left Friday, February 10^th around 5pm. My husband, Wyatt and I in our SUV, and Grandma and Grandpa followed in their rental minivan with our other three kids. Why the family trip? Well, we figured an actual vacation is not in our near future so we might as well make the most out of this trip. My husband has family near Chicago so it would be a chance for the kids to spend some time with everyone and hopefully see some snow. We wanted to drive overnight in the hope that the kids would sleep through most of the 20hour ride. As usual, kids have their own ideas and with constant stops for diaper changes and breath holding episodes, we ended up having to take a quick nap at a rest stop to push through till Indiana where we stayed, or I should say crashed out, with relatives for the remainder of Saturday. Sunday we then took on the remaining 4 hour drive. I have to mention here that stopping at any time anywhere with all of Wyatt’s gear is an undertaking every time. It’s never just a quick unbuckle from the car seat, switch that diaper and of we go. Unbuckling him and taking him out of the car seat is a challenge because of the vent circuit always getting in the way or getting snagged on something. And then there is also the Pulse Ox wire, and if it’s feeding time, then the feeding tube is yet another obstacle to fuss with. Once we arrive anywhere for a longer period of time, we then also have to unload and set up everything which takes a good 30 minutes.

Camp day 1: Everything was really hectic and disorganized. Wyatt was supposed to be admitted around 2pm. We were staying with relatives 30 minutes outside of Chicago the weekend prior to admission to the hospital and a friend graciously offered us their condo in downtown Chicago for the nights that Wyatt would be inpatient.  The condo was about 10 blocks away and with traffic in and around town, we left early to check out the area. Once we got to the hospital we had to go downstairs to admissions to fill out some paperwork. Since we arrived early we had to then wait and decided to grab some lunch. My first impression of Children’s Memorial Hospital wasn’t great. I felt claustrophobic in that building. It’s an old building with low ceilings and small rooms. When we were told a bed was available, we were taken to the PICU (Pediatric Intensive Care Unit). That’s where Wyatt was supposed to spend the first night to be observed. It didn’t sit right with me that he was in the PICU though. I understand that is the one place where he’d get the best nurse to patient ratio so therefore he’d be observed closely but at the same time, who knows what all those other sick kids were there for and what type of potential infections and illnesses were just lingering around the corner. Wyatt was hooked up to all the monitors to keep an eye on his oxygen saturation, heart rate, co2 levels, as well as frequent blood pressure and temperature checks, and weighing every diaper for input and output comparisons. It was basically impossible to pick him up and hold him with everything he was attached to. Of course with all that stress and us not being able to comfort him, he went into a few breath holding/cyanotic episodes and I was ready to cry because I felt like we are voluntarily torturing our son. Toward 5pm Dr. Weese-Mayer came into the room and we went over his medical history and a bunch of clarification questions. Thankfully we had a good night nurse and after a long debate between my husband and I, we decided that it’d be best if we both went back to the condo to get some sleep since we knew we’d have a long week ahead of us. So around 10pm when Wyatt finally fell asleep we were able to leave.

CAMP day 2: It took me a minute to realize where I was when the alarm on my cell phone went off at 5am. I had a hard time falling asleep that night wondering how Wyatt was doing and whether we made the right decision to bring him here for evaluation. With a quick Starbuck’s run, we grabbed a cap and arrived back at the hospital at 6am. Around 7am Wyatt was moved from the PICU to 9West (a higher floor for ventilated kids) where he would stay for the remainder of this hospital admission. That room was even smaller (semi-private) than the PICU room and not very clean. We were told that around 9am the CAMP staff would come and bring Wyatt to their lab. Here I was imagining that CAMP would be such a great impressive program with its own hospital floor because that’s how Dr. Weese-Mayer described it (“our floor”). The CAMP lab was great and spacious and clean but it was literally just three conjoining rooms that Wyatt would be brought to from 9a-4p (the day room) and again from 9p-6a (the night room) while being observed by the CAMP staff from the third adjacent room with a bunch of cameras and monitors. In between the CAMP lab, he’d still have to go back to his room on 9West. Each time going back and forth meant unhooking all of the leads used at CAMP (and there were SO MANY leads on his head, arms, back, stomach, plus the Holter monitor), rolling him in his hospital bed back to his room and then hooking him back up the monitors there. Of course, moving Wyatt at 6a and 9p meant he’d always get woken up when he’d normally be sleeping which messed up his whole daily schedule and didn’t put him in a good mood. That in turn then meant that it was very difficult to get him to cooperate during the evaluations and was having more episodes. Unfortunately the back and forth was going to be a daily hassle we simply had to accept. One of the first things that the CAMP staff decided to do was to change Wyatt’s trach from his 3.5 NEO flextend cuffless Bivona to a 3.5 NEO tight to the shaft cuffed Bivona which they intended to only inflate with 1cc of sterile water and to do so only while sleeping. We voiced our concerns right away that a TTS trach would not work for Wyatt because he has no neck yet and it’d be a source of irritation and would limit his head movement. The reason behind the trach change we were told was that he’d be better ventilated and the co2 reading would be more accurate. So we decided to give it a try and see how it goes. (I’m going to try my best to stay objective here and not give away our current opinion on decisions that were made at CAMP. I’ll save that for the next blog post.)A lot of ventilator setting changes were made without much explanation except that it was done to optimize his ventilation. The goal was to come up with a vent ladder system to would allow us as the parents to make ventilator setting changes at home based on whether Wyatt was awake or sleep and based on his co2 readings. The main conversation topic of course were Wyatt’s severe breath holding/cyanotic episodes that always ended with deep desaturations and him passing out. Previously we had been told that there is no need to ambu bag him during these episodes because his airway is completely closed off, bagging him would put too much pressure on a closed airway that it could do more damage than good, and that by the time he passes out and relaxes, the vent can finally kick in and do its job again. CAMP now decided that we need to bag him with O2 during each of those episodes to help him recover faster. We were told that these episodes can severely compromise his neurological status and that we need to at all cost prevent them from happening. I have to mention here that at that point in time we were already observing that Wyatt was having a lot more episodes than his norm at home. We mentioned our concern to the CAMP staff and explained that we were aware of the severity and the need of prevention and that at home we had narrowed down what situation or behavior is most likely to cause an episode and we had effective comforting measures to prevent these episodes 90% of the time. The response we received was that they weren’t too concerned that he was having more episodes than baseline and that it’d be better for the CAMP staff to see him at his worst because if they can optimize his ventilation at his worst than we’d be well set for managing him at home.

CAMP day 3 and 4: I don’t remember exactly what happened on what day so bare with me. CAMP informed us that their monitoring revealed that Wyatt was having random desats even as low as in the 40s while awake and happy and without any physical signs or symptoms. Based on that information combined with his breath holding episodes when he gets mad, they put him on 7L of oxygen continuously while awake to give him a higher blood oxygen reserve in the hope that he won’t desat so low and recover faster. Those dips in saturations didn’t make any sense to us as we had never seen that happen before at home. At the same time we started to panic thinking how are we supposed to get Wyatt back home on 7L of continuous oxygen over a 20+hour drive when he didn’t used to need any oxygen at all. A portable oxygen concentrator can’t give as high as 7L and 7L continuously equals a ridiculous amount of O2 tanks to be traveling with. It all seemed really surreal.  Then the team also informed us that they found a 2.9second pause in Wyatt’s heart rate during the first night in the PICU. Spontaneous prolonged sinus pauses are a risk factor for CCHS patients and over 30% of CCHS patients will end up needing a cardiac pacemaker at some point in time. The cutoff for recommending a cardiac pacemaker is 3.0seconds. Needless to say Wyatt was right on the edge of the cutoff and that was a concern. To some degree we were doubting that the monitoring in the PICU could be trusted since leads can easily come off partially and give false readings. But then we also got anxious to hear the results of the 72hour Holter monitoring that is routinely done at CAMP. Meanwhile, my husband and I kept trying to make sense of it all. Why would Wyatt suddenly have these random desats and need oxygen when that was never the case before? We also noticed that his resting heart rate during sleep was higher than usual. The first couple days we thought it was the stress of traveling 20hours and going through all these assessments but something just didn’t feel right. I have no other way of explaining it but that Wyatt simply was too calm when awake but then also had far too many episodes when he got upset. We again spoke with CAMP staff about our concerns that Wyatt is just not acting like himself. We explained that we were convinced he was getting sick but CAMP tried to reassure us that his behavior could simply be different now that his ventilation is optimized and he’s had a few days of having to calm himself down by being in the bed by himself instead of us holding him for comfort. I can’t tell you how many times we went back and forth with them. We told them, he doesn’t normally just slouch over in the high chair and just sits there, he also doesn’t normally just lay in bed all chilled out. Typically he’d be pulling on wires, kicking and grabbing things, playing, laughing and only having an episode or two when he’s overly tired at the end of the day. Something just wasn’t right and it wasn’t just the stress of everything that was going on.  And it certainly didn’t sit right with us that our concerns were just brushed off. Yes, CAMP is the expert on CCHS and is amazing at optimizing ventilator settings and making them applicable to different activity levels but we were getting the impression that to them it was all about getting all their evaluations and numbers in those 5 days, not much else. So no surprise, they felt that Wyatt was severely developmentally delayed as he was not interacting much nor did he want to play despite us reassuring them that he does all those things at home. We even had our local therapist fax them Wyatt’s recent developmental assessment that was performed. Another issue we kept running into was the TTS trach. Wyatt was not comfortable with it and every time he moved his head the circuit would come disconnected, even when trying to use twill to keep it in place. Since he has no neck, it then also made it very difficult to get a hold of the trach to reconnect the circuit and it was aggravating him further every time that happened. We told CAMP every single day about these issues and that this type of trach would not work for Wyatt. We told them that we are not against a cuffed trach but that it had to be a flextend. CAMP staff replied that a cuffed flextend trach is a custom order so therefore the TTS was our only option at this time to be able to use the cuff and optimize his setting  and that Wyatt would get used to it over time. In not so nice words I told them that at home I would have already switched him back to a flextend trach to ensure his comfort regardless of the cuff or slightly more challenging vent adjustments. Things kind of escalated by Thursday. The CAMP staff acted like they were convinced that we were against their recommendations and in turn we were frustrated with them that they didn’t value our parental input. We were over being told numerous times that simply blowing in Wyatt’s face would stop his episodes as if we had never tried that before and as if we were just sitting back relaxed when Wyatt has an episode. I got so angry at them for talking to us as if we were careless and weren’t aware of the potential neurological damage that each episode can cause. We ended up insisting on a sit down with Dr. Weese-Mayer to go over what medical discoveries were made, what the recommendations were and to simply clear the air. We were not against CAMP or their recommendations and we value their input. But we took offense to them trying to tell us what is normal and not normal for our son, to them telling us that we shouldn’t hold our son that much to comfort him and that he shouldn’t sleep in the same room with us at home. I really don’t care if you are a world famous expert but you are not going to sit there and tell me how to parent my child. You know absolutely nothing about me or my parenting style. Anyone who knows us is aware that we do not spoil our children and have high expectations of independence and responsibility from each one of them. Wyatt is no different. We simply have to prioritize. If holding him for comfort keeps him from having breath holding/cyanotic episodes while he is still too young to have other means of communicating with us, then so be it… While we’re on the topic of frustrations, we had a beef with the nurses on 9West also, mainly the night shift. Since Wyatt was only officially in his room on the floor from 4p-9p and then again from 6a-9a, some nurses were acting like they were only responsible for hooking up his feed. One particular incident that could nad should have been prevented pushed me over the edge. Sometime between Wyatt getting a trach change done at CAMP to upsize to a 4.0 NEO TTS cuffed Bivona trach during the day and him coming back to his room in the late afternoon, no one cared to check whether his trach tie was on tight enough and he decannulated with the cuff inflated. It was so loose I was able to put 4 fingers between his neck and the trach tie. And since his room was so unorganized and the emergency trach and syringes to deflate his cuff were in a spot that no one could easily reach, we had no choice but to reinsert the cuffed trach and then yell at everyone afterward. Not only were the emergency supplies not accessible but his nurse for that night wasn’t even anywhere to be found. Another nurse and RT came in the room to assist. Of course that incident caused trauma to his airway and he had a fair amount of blood in his secretions the next morning. So we ended up talking to the nursing director for 9West.

CAMP day 5: The last day of CAMP was just as unorganized and hectic as the first day when Wyatt was admitted. Everything was so rushed. CAMP picked Wyatt up earlier that morning even though the nurses and RTs on the floor were not even ready. The good news was that they had weaned Wyatt down to 2L of oxygen while awake and they were able to get Apria to help us with renting an oxygen concentrator and several O2 tanks for the few days we had left in Illinois after discharge, as well as for the 20hour drive back to Florida. While CAMP was testing Wyatt’s ventilation needs in the car seat, we talked with Cardiology to discuss the Holter results. Fortunately they didn’t find any other prolonged pauses but they did recommend to be proactive and get a 72hr Holter done every 3-4months. Endocrinology came to speak with us as well because there were discrepancies in the growth charts sent from Wyatt’s Pediatrician vs his Pulmonologist. We explained to them that we didn’t feel like his growth measurements were trustworthy because he would almost always go into an episode when the doctor’s office tried to take his height and weight, therefore, he wasn’t relaxed enough to stretch out for a good length measurement. We have noticed slow progress in Wyatt’s growth in regard to his length but aside from keeping an eye on it and making sure we get good measurements, Endocrinology explained that there isn’t really much that would be done until age 1. Another thing they wanted us to keep an eye on was his blood sugar level because they had one low reading in the five days at CAMP. They do believe that since it was only one low reading that it was probably due to a procedure mistake. But just to be on the safe side, they want us to check it daily for one week after his longest time period without food. The sit-down with Dr. Weese-Mayer summed up what the specialists had already said and she urged us to get home nursing again. Her primary goals were to control the breath holding episodes and to intensively work with OT,PT and Speech. She again went into her ideas of parenting techniques which we this time chose to ignore instead of getting angry again. What was frustrating to me was that even our final sit-down with her was spontaneously ended by the CAMP staff wanting to take Wyatt back to his room. The day ended by us waiting for the delivery of the O2 tanks and getting discharged. I can’t speak for my husband but I left feeling really overwhelmed without a clear understanding of what was actually accomplished in those five days other than identifying a lot of potential risk factors that may or may not happen in the future.

Driving back home: Simply put, it was a disaster. The plan was to leave early Saturday morning but the rental minivan that my husband’s parents were driving with our other three kids broke down. After getting all that sorted out, we finally left Saturday afternoon. Wyatt had diarrhea and kept going into back to back episodes every time he was awake no matter what we tried. We were even having trouble keeping his co2 level in range despite using the newly established vent ladder. Having to ambu bag your own child multiple times in the car during each episode is mentally draining. No one spoke up about the thoughts going through our minds but we all knew that our concerns of Wyatt being sick were true. We also knew though that our only option was to get home as quickly as possible to see our Pulmonologist who knew about CCHS and has seen Wyatt before. I was terrified that eventually he would have an episode that he wouldn’t simply recover from just by bagging him with O2. We ended up stopping at a hotel overnight and then driving the rest of the way on Sunday. We finally got home late Sunday night, Feb 19th.