Necessary Evils in Three Parts.

It sucks. It sucks in every way that you would think that it sucks and in about a thousand ways you couldn’t even imagine until you’ve been there. It sucks in ways that even those closest to us won’t fully understand and those farthest away can’t even comprehend. It sucks to need home care nursing.

I’m not going to try to find a better word for it. It just plain sucks.

It sucks to feel like your ability as a parent is being called into question when you’re told that you will need home care nursing before you have even gotten your child home. To feel as if you can’t take care of your own child as a family. That someone needs to be paid to come in and help. It sucks even worse when you realize that it’s true. That although we are perfectly capable of taking care of Liam, and he is much safer in our care than anyone else’s, that the 24/7 grind of seizures, and ventilators, and feeding pumps, and medicines, ultimately will wear us down to an exhausted mess.

It sucks to have a stranger in your house. I like my privacy. I like relaxing and being comfortable in my own home. If I have to behave in any guarded way in my own house I get cranky. It sucks when the only nights you get to share a bed with your wife are the same nights that you have someone who is essentially a stranger sitting awake one floor below. It sucks to have to whisper. It sucks to worry that if you raise your voice in an argument the rest of the nursing company might hear about it. It sucks to have a small cozy home with only one bathroom that shares a wall with Liam’s room after burrito night. If a man can’t be comfortable on his throne where can he?

It sucks to worry anyway. To spend shift after shift watching a new nurse, hovering in the doorway, or laying awake overnight listening for ventilator alarms negating any relaxation they are there to provide. To meet 5 nurses who seem barely competent for every one who instills any confidence. To then lose the good ones to office politics, or geography, or a cat allergy and then wait months for the agency to hire someone with the training that Liam requires. To then have the insurance company cut back your hours for lack of use, not really caring that it was because the agency didn’t have anyone hired and not because we didn’t want them.

It sucks to have to run my own family’s plans through a nursing company scheduler who has no understanding the impact her job performance has on what we as a family can or cannot do. To be given attitude and lectures for changes or demands. To be scolded for discussing scheduling changes with the nurse that it would affect because it disrupted some kind of office protocol.

It sucks to have to compromise. To have to take a chance on a nurse with little experience in a trade for respite and a bit of sleep. To have to weigh a bargain between our own well-being with Liam’s safety. To have to settle for whoever decides to answer the want ad in the paper when most of the nurses go on to hospitals, doctor’s offices and other institutions.

It sucks to find that perfect nurse. The nurse that just fits. The nurse that while having the skills necessary to care for Liam also has the personality to understand our plight, our privacy and our need for respite, not more stress. It sucks to find that nurse and lose them to another job or their own family obligations. It sucks to have Liam’s school schedule be impacted  by that perfect nurse’s schedule. To worry every time that Liam is admitted to the hospital for a long-term stay that they will be forever lost to another case, because it is just a job to them. They can’t be waiting 6 weeks for Liam to come home to work.

It sucks to have this nagging doubt because of their looks or questions when talking to acquaintances and co-workers about nursing that they think it must be so easy. That having “free” “babysitters” every day means Karin must have so much time for herself. It sucks to have it come up in conversation at all. People who’ve never seen it don’t understand. It sucks to know that some of the nurses themselves don’t even understand. I know it’s your workplace, but you are in my home!


For four years we never had nursing on a Tuesdays.  Frustrated by watching nurses care for Liam in the hospital the first 9 months of his life, we decided soon after taking him home that Tuesday’s would always be Mommy and Liam days. But we also wanted Liam to eventually attend school five days a week and so Tuesday nursing was needed.

We had nursing on Tuesdays for less than a month about two months ago. I’m not so sure we will again anytime soon.

Just when we thought that having nursing couldn’t suck any more a new level of sucking rained down upon us when Karin stepped out of the shower to hear her name being called and Liam’s ventilator alarm beeping loudly along. Charging into his bedroom Karin found Liam’s nurse, her third week on the job with us, frozen in panic with tears of fear in her eyes. Liam lay in his crib blue and unresponsive. Within seconds Karin had shoved the nurse out-of-the-way, assessed the situation, put Liam’s trach back into place, hooked up the ambu bag to direct oxygen and revived her son. In front of the licenced professional being paid to allow my wife time to do things like take a shower. Every day since I think about how lucky we are that Karin was only in the shower and not out grocery shopping or picking up Liam’s prescriptions.

The nurse still in a panic and unable to think of what to do next, Karin sternly told her to call 911 (so that the paramedics could come out to asses if they thought there was any lasting effects) and then to get the fuck out of our house and never come back since you almost killed my kid. That action the nurse was able to do. So quickly in fact that she left behind her glasses, and was to afraid to ever ask for them. (we sent them to the agency for her anyway).

I’m not mad that Liam’s trach popped out while she was changing Liam’s trach ties. It happens. It’s happened to anyone caring for a kid with a trach. I’m mad that this “nurse” didn’t know what the procedure was for its (inevitable) occurrence. I’m mad that the nursing agency’s training program saw her as able to care for a child with medical needs as complex as Liam’s. I’m mad that my wife has gone into sweats and relived the moment that she saw a blue and lifeless boy in Liam’s crib every time she hears his vent alarm go off and she isn’t in the room. I’m mad at how hard it is going to be to try to trust a new nurse ever again. I’m mad that even though I called their office  from my own to tell them why that nurse would never be going anywhere near my child again, no one from the agency ever called to check on Liam. To check on Karin. To tell her that they were sorry for the pain, and stress that this has caused. I’m mad that there is a file in that office somewhere that has notes on whatever story that nurse gave when she went back to the office but doesn’t have a single word of what happened from my wife’s point of view.

I’m mad.

I’m mad at the amount of guilt that both Karin and I have beat ourselves up with. That maybe we should have been a bigger part of her training before realizing that if you say you can care for a trach/vent patient you should already know how to check whether or not a trach is even in place. I’m mad that my wife now feels guilty at the thought of leaving Liam with anyone else even more than she did when he was a baby. I’m mad that I didn’t notice something in that nurse’s first three shifts to red flag me to fire her  before anything like this could ever happen.

And I didn’t think I could get any angrier.


Then a news story came up last week. If you don’t want to click-through to the link I’ll give you the highlights.

According to police, a Cranston couple went out for dinner Monday night and left their nine-year-old disabled son with a caretaker. When watching the child through the home video monitor on their cell phone, the couple discovered the caretaker reportedly abusing the boy.


According to two Cranston officers who viewed the footage, the video showed Faneuf grabbing, shaking, and twisting the child’s left arm while he was lying in bed. It also shows her grab the child’s head and the side of his body, sit him up, then slam him down on his back, police said. The video also showed her hastily wiping the boy’s face.

When the couple examined their son they found bruises on his forehead and arm as well as a blood spot on his eye, according to police.

It’s a story that made me sick to stomach. Sick to my stomach before I saw the mug shot and read the name and recognized the nurse as one who had cared for Liam two night’s a week for three or four months last year.

Liam is fine. He is doing well with his therapies. He is more aware and alert as he has ever been. He is growing like a weed and medically as stable as he has ever been before. Let’s just all keep that in mind because whenever I think about this situation, I keep having to remind myself.

We never saw anything suspicious or any signs of abuse. She has not cared for Liam in almost a year.




But what did we miss during those four months? Upstairs, selfishly trying to get a full night of rest with my wife? Did anything like this happen to Liam but we never knew? Liam can’t tell us where it hurts in the morning. He can’t tell us if it hurts at all. Were there signs that we had missed?

(Oddly enough, at the time Karin and I had decided while she was on a vacation week to fire her from Liam’s case because we didn’t think she was making any attempt at connecting with Liam at all. As if he was just the inanimate object she had to watch for eight hours. It was enough that we didn’t mind sacrificing the weeks of sleep we would do without waiting for her replacement. The agency let us know that she had put in her notice with our case anyway. That she was moving on to a case closer to her home. Well that worked out, I guess.)

And  that’s were we are. I don’t know what to do next.I don’t know how to process what could have happened because I don’t know that anything did. I’m angry at the thought that it might have. I’m angry that it may have been going on and we weren’t there to protect Liam, since he is unable to protect himself. I’m angry that monsters who would be willing to do anything like this to any child let alone a disabled child unable to protect themselves or run, or scream, even exist and that someone who may be capable of it was in my home.

We are down to only one nurse now. Luckily, this one is that perfect fit. He connects with Liam, He connects with us (just as important) and he is wonderful with Liam at school, constantly encouraging and ensuring play and interaction with all of the other students, but he can only work so much. We have no more night nursing and, well, there’s that Tuesday shift. We will have to take on a new nurse at some point whether it’s for a few nights a week so that Karin and I can sleep again or so that Liam can go to school all week which is still the ultimate goal.

I just don’t know if I can do it. I don’t know if I can put on a fake smile and meet someone new. To trust another nurse. To trust the agency when they say, “oh, she’s/he’s a great nurse, lots of experience.” To explain why it does matter if Liam’s circuit lay upside down (moisture collects in the sensor tubes) or why his cuff needs to be deflated when he fits his Passy-muir valve (closes off the air around his trach with a one way valve and suffocates him) and why we don’t want diastat given at exactly five minutes of seizure length no matter what your nurse’s notes and the orders in the chart read (many of Liam’s seizures will resolve on their own when allowed. If it’s getting stronger at 5 minutes then of course but there are shades of severity that can be hard to explain).

I don’t have the energy for it. I don’t have the trust for it. I don’t have the words or the inspiration to turn it all into a happy ending or a moral for patience and perseverance. Instead, I have a whole lot of anger and resentment towards it all and I was hoping that writing about here might help with that.

I guess well see if it does.

Like I said, it really sucks to need home nursing.

Its all about Liam.

I’m blogging earlier than usual today as Karin is at the gym and I am up to answer any questions for our new nurse who just started. The first day with a new nurse is always a bit of work to put together. They need to get to know Liam. They need to get to know us. More importantly we need to get to know them and whether or not they will be a good fit for our family. These people are in our home; having a nursing degree and some experience is not enough to ensure that they’ll work out.

So far so good with this nurse. She seems knowledgeable and pleasant enough. One concern is that she is allergic to cats. I can’t tell you how many times we have told the agency about our cats but nurses who are trained to handle trach and vents aren’t all that common and sometimes we have to take what we can get.

Our usual daytime nurse needed to take some time off which Karin and I can completely understand. It will take some time before we can both leave the house or sleep late again. Hopefully this new nurse will catch on quickly and Liam will like her and we can get back to planning our mornings to include running errands and going to the gym together. We’ll see. Liam hasn’t woken up yet so we aren’t even sure how he will respond to her. I think he’ll like her but we’ll see.

Liam did great at his pediatrician’s appointment yesterday. To get all the dirty details out of the way he is now weighing in at a lean 21lbs 7oz and 27inches long. He is now officially, and for the first time in his life, tracking along the growth curve. Gone is the ever increasing chunkiness he’s now a lean mean pooping machine. We discontinued one of his GI meds and are on our way to getting rid of another in the next month. Yay!
Liam and his daddy at the Doctor’s office.

He had to get his 12 month immunizations and so got 3 shots all at once and then needed a blood draw to check a CBC and Electrolytes. My boy is one tough cookie because he took all those needles like a champ. HE even fell asleep as the lab techs in the office hemmed and hawed over where oh where to stick him for the blood work. They were so distraught made worse by the fact that when they asked where he would get blood work when in the hospital Karin told them that he had to have a central line put in by a surgeon. They were not happy to hear that. They did their jobs well though because since they took so long t find just the right spot once they did stick him they were able to get everything they needed rather than be forced to make multiple attempts.

After his appointment we all came home and since I had the day off from work we were all able to take a nap in the living room together. Wonderful Quiet. It was a wonderful day. There truly is nothing better than taking a nap with the boy.

So there you have it. Liam has had an exciting couple of days and is still sleeping as we speak. It is possible though that he is playing possum and pretending to sleep because he doesn’t know the strange older woman sitting next to his crib. He does that sometimes, hoping that if he doesn’t open his eyes the strange woman will just go away. No such luck buddy, her shift ends at 2pm.

A couple of photos and a quick update.

Nothing major to report from the homestead today. Liam had good days and slept through the night again. He’s a bit cranky because he finally got his H1N1 vaccine yesterday (whew…) and he had another seizure this afternoon but just a bit of a blip and nothing worth worrying too much about. He has otherwise been active and alert and simply wonderful to be around.

He had a nice long visit with his Meme (My Mom) yesterday and another long visit from his Grampa (my Dad) today. Its a very good thing that Liam loves to be held.

We have been weaning his oxygen veeerrrry slooowly. He’s down to 1liter of flow and could probably go even lower as he is satting at 100% most of the time. We have decided on a long term plan for the wean because of the severity of this year’s flu season. Had we come home in May or April and facing the summer where less bugs spread we would be much more aggressive. Let’s get through the winter before we make any major changes. He deserves to get some rest and grow stronger before we ask any more of him.

I hope everyone got a chance to thank a veteran today. Thank you, men and women of the military for your service.

I had to work today but only for a half day. Came home and met with a service care coordinator for Liam and then spent the rest of the afternoon holding my boy and reading to him. We played games and sang songs. There is no better way to spend an afternoon.

Karin and I are making breakthroughs and major decisions with the home nursing situation. It is a strange thing to have a staff of nurses in and out of your small house and as we have grown more comfortable we have grown more assertive. It is important that everyone in the house remembers who is in charge of all decisions…Mom is. Sometimes she even lets me think that I had a part in the process. We have made some room layout decisions that will give us more of a private space that Liam can come with us where we can escape. To run away from the stream of visitors and “staff” — Physical therapy, occupational therapy, speech pathology, Nurses, medical equipment representative, oxygen delivery man, Nursing supervisors. More people have come through the house in the last month than we have had over to any apartment we’ve ever lived in. The second floor will become our little oasis. An island from the stress and chaos. A comfort zone. I can’t wait to get started this weekend.

Got a bunch of cool links but not nearly enough energy to put a list together now. Now, we try and sleep.

Night all.

Just a bunch of Homebodies.

We’re all home now! Liam was sprung at about 4:15pm. I’m pretty tired from work and kid stuff but I need to force myself into writing here at least daily. There was only one major event for today and it is the best news of the week so far! Home.

There was so much confusion as no one seemed to know what the plan was. Since 5 different doctors follow Liam’s case no one quite knew who was keeping us there so long. Each one thought we were still there because another was waiting for some results or changes. Its that lack of communication and attention to details that made up the differences between being in the ICU and the regular hospital (or GenPop as I called it). Its quiet. As all of our experience in the hospitals were in the ICU, we weren’t ready for the quiet. Less equipment running, less monitors beeping, less ventilators breathing. Quiet. I was also surprised by how little we saw of our nurse. Without sounding cocky – aside from starting an IV – there is nothing that a nurse would do for him that Karin and I have not been doing for months. We went close to 4 hours without seeing a single nurse today. Don’t get me wrong I am not in any way saying that the nurses themselves were the problem. They were all knowledgeable and helpful when they could be but the job is simply different than ICU nursing. Instead of 2 patients per nurse in the NICU/PICU, I think the ratio was closer to 6 to 1 up on the regular floor. The nurses were relieved to have a set of parents as knowledgeable and as independent as we were because it left less work for them. All the more reason we should have been home. If we have no use for the nurses why did we need to be there? Well Karin and I made enough noise for them to just give up and say get out of here. We didn’t need to be told twice. We were in the car about 20 minutes later.

The pediatrician has been called. Nurses won’t start coming until Thursday because we need some time alone first. He is in tip-top shape and we are ready to start our third experiment in home living. I’ll post pics when they’re ready and I plan on posting some long pieces soon. Expect tweaks to the layout and design of the site too. There’s lots happening here so make sure you tell your friends to visit.

Liam is sleeping comfortably and I don’t see why I shouldn’t do the same.

Night all.