Trach/vent

Thoughts on our Halloween

It was actually Easter I think, a bunch of years ago, when Liam’s cousin Max saw us coming up the front walkway at Gramama’s house and bounded towards us with toy in hand. Racing toward us so quickly and at only three or four years old at the time, I could barely understand him as Max pushed the Darth Vader action figure into my hands. 

” the same, the same bleeding machine, he has bleeding machine!” His excitement proving that he had been waiting for us to get there just to show us.

” a bleeding machine?” I asked for clarification, as max let me have the toy and gently grabbed Liam’s hand to say hi to him. 

“No.” Max said and grabbed onto the circuit tubes connecting Liam’s trach to his ventilator. “BREATHING MACHINE.” He said. 

The same. The same. 

Better than even some adults who had met Liam in the early days, it isn’t as complicated as some would make it, his cousins got it. Like it was no big deal.

Darth Vader and his cousin Liam. They both need a breathing machine.

The same.

I’ve always loved that story and that moment, because in Max’s childlike enthusiasm he showed not only that he understood  what Liam needed but also that it was pretty cool.

I’m thinking Liam’s cousin Max would get a kick out of Liam’s Halloween costume this year. 

 

Darth Liam finds your lack of faith disturbing

 
Halloween can be tough one for us. Liam doesn’t eat by mouth so candy is out, most sidewalks and front walkways ( in our neighborhood anyway) aren’t wheelchair accessible, and even school has made costumes on Halloween against the rules, opting instead for a “spirit day” where all students are encouraged to wear black and orange, but NO COSTUMES! Either intimidated by the wheelchair ramp or because there just aren’t that many kids in the neighborhood we only got four trick-or-treaters so even making an event of that part of the night doesn’t work much for us. 

Basically, it’s hard not to feel isolated when nearly all aspects of the day do little but highlight how different our life as a family can be from so many of the people around us. Even dressing Liam in costume, an act that is essentially only for Facebook and Instagram, can be fraught with difficulty. 

Long time readers know how important Liam’s dignity and agency are to us. He is a little boy, he isn’t a doll, and so are we dressing him in costume for our entertainment or because society tells us that we must on Halloween. I don’t know. When he was a toddler it was easier. Choosing the right costume for a baby is always more for the parents whether going for adorability or irony (mad men characters? Game of Thrones? Donald Trump?) but at what age do we take into account what a non-verbal Liam wants or does not want to wear? We make it a point to ask Liam to choose his costume, and he does. We ask him if he feels comfortable when he’s wearing it which he generally does, and if he doesn’t it immediately comes off. Thankfully, target has come out with these hooded sweatshirts with a partial mask attached to the hood. Last year Liam was Captain America, this year he was everyone’s favorite Sith apprentice, while wearing nothing more than a hoodie. Awesome. (This is a blog that doesn’t do ‘brand engagement’ for a number of reasons. But thanks for these Target) they’re so awesome in fact that against the rules or not we send Liam to school in his costume anyway. I can’t wait until they try and tell us we shouldn’t have done it. Showing off his hoodie at school is just about the only Halloween thing he can do. 

This year we made the best of it. Unfortunately we spent a portion of Halloween at Liam’s pediatrician’s office (long story, he’s fine) but after that we celebrated on our own. Our way. After his grandparents visited with some little toys and crafts for his goodie bag (in lieu of candy), if I could have added large hinges to the wheelchair ramp and raised it like a drawbridge for the rest of the night I would have. We carved our pumpkins, we baked our seeds, we watched our Bruins (big win!) and soaked in being together as a family. 

Halloween can be a tough one for us. So we just stopped doing it. You guys do your thing with your candy and haunted houses and trick-or-treating, and crazy far out costumes. 

We’ll be at home, in our hoodies, being a family. It doesn’t always look like everyone else’s, and it can be vary isolating. 

But At least we have each other. 

Hoppy Halloween from the Olson & Son Hopyard

He just keeps proving them wrong. 

“I think you should focus on the time you have him with you now because we can’t really say for certain Liam will ever leave the hospital.” 

“Liam will mentally always be an infant, and won’t ever be able to communicate” 

“We might be at the point where we should discuss extubating from the ventilator and letting nature run its course.” ***

There are days that I wish we could track down some of the doctors that have crossed paths with Liam in the NICU and PICU just so that we could tell them “We told you so” 

Dropping this big boy off for his first day of the FIRST GRADE(!!!) this morning is definitely one of them. 

   

Happy first day of school to all of you students, parents, and teachers out there. 
****Yes, we once had a PICU Attending tell us this after only 48 hours of intubation when Liam was only 6 months old. He said this BEFORE WE EVEN DISCUSSED GETTING A TRACH! I’ve never come closer to punching someone in the face, and I’m thrilled to tell you he no longer works anywhere near here. I’d love to have a chat with him again now. 

A quick visit.

******

It always happens so damn fast. After an amazing Saturday afternoon which included a visit from New Jersey by Liam’s grandparents, dinner out at one of Liam’s favorite restaurants (of the two he’s visited), and a visit to one of our favorite places in all the world, the Roger Williams Park Zoo. It was Sunday that started with Liam having a weird shivering motion we’d never seen before and a rising temperature. Some Tylenol and Motrin, and a quick call to his pulmonologist’s nurse practitioner just to give her a head’s up, things seemed to resolve using Liam’s sick plan (The sick plan is a series of ventilator changes and nebulizer treatments given at our preditermined increase when Liam isn’t feeling well, Waiting until an illness arrives is the wrong time to come up with a plan for how to treat it with a kid on a ventilator.). Reaching a high of only 101.3 in the afternoon, by the time we got Liam to bed at 9:30pm he was sitting at 98.8 and we thought we were out of the woods.

It was 11:18pm when we went in to check on Liam. Now, with his temperature rising, the shivering motion that resolved so quickly in the morning was present and stronger. His rate of breathing was about three times what it should be. By a quarter to 12am we were calling 911.

By my count 5 of the 6 EMT’s and firemen  who responded have been here before Sunday. The holdout looking barely old enough to drive. The blood rushing from his face as he walked in and took in the tubes and chords across a little boy’s bedroom. He watched as we changed Liam’s trach and looked for a chest rise and listened through our own stethescope, listening to see how well he was moving air just in case the respiratory problems were from an occluded trach. I would have laughed at him if I wasn’t busy rushing out of the room to get the Liam’s suction rig ready for an ambulance ride and making sure the med list saved in my phone was current, while Liam Karin got Liam, his ventilator, and his oxygen tank ready for his transfer to the stretcher.

It’s been a few years since we’ve had a sick visit to the children’s hospital. We’re out of practice. But back into our roles we all fell pretty easily. Put onto the Servo Ventilator ( a huge hospital-only piece of equipment) in the ER and for it only taking three tries in three different veins on three different parts of his body to get an IV access (it usually takes many more), Liam almost immediately looked to be breathing better. Against the doctor’s wishes (“that’s not the priority right now!” she yelled at the nurse) the impressive ER trauma room nurse caring for Liam, was able to get the blood needed for labs before taping the line onto Liam’s bicep. That line would miraculously stay flowing and give them a place to administer IV antibiotics, until we left yesterday afternoon, and while she tried to get it while getting yelled at by a Dr. I cheered her on the whole time as if she knew that Liam being such a hard stick, if she didn’t get the blood from a vein then, it would probably take an OR procedure later to do so and not blow the line for access.

By Monday afternoon Liam actually looked pretty comfortable. Sleepy for sure but his fever controlled again by tylenol and motrin, the new Nurse Practioner of the PICU who we had not yet met, seemed more than a little surprised and a bit put out that even though he was back on his home vent and his numbers seemed to be ok, I refused to let her ask Liam’s pulmonolgist and the PICU Attending Dr. to let us go home that afternoon.

“Parents don’t usually ask to stay here another day sir, his numbers have been very good.” It was clear her plan was to get us out of there as soon as possible. Karin and I gave her the reasons why we flat out refused to go.

“Even though he looks fine now, we haven’t gotten any answers as to what happened to cause him to get here. We made subtle changes to his vent settings only a few hours ago!  We don’t know yet if he’s going to tolerate them while he’s awake and breathing normally?! Lab cultures haven’t even come back yet, we don’t even know what his high white blood cell count in the ER was fighting off. No. We have gone home and then had to turn around and be re-admitted before, we aren’t doing that again. No. we are staying one more night to see if he really is doing better.” I said.

I’d be lying if I didn’t get just a bit of satisfaction when she had to come back only a few hours later and explain that his blood cultures grew out strep pneumo probably causing the fever and the pneumonio symptoms in his difficulty breathing the night before, and that while we wait to see what antibiotics this bug is most sensitive to, if we had gone home when she offered, she would have then had to call us back to be re-admitted through the ER for IV antibiotics. We were right. It was a good thing we hadn’t left.

The wait was kind of brutal. Liam really was doing much better. But that was because of the Cephtriaxone. If there were an oral ( or a non-IV administered version) of that antibiotic we would have been home on Tuesday. Instead, we were forced to wait until the lab got true drug sensitivities of this particular strain. Apparently different strep bugs all over the country are more or less sensitive to different antibiotics.

“Why haven’t we just tried good ol’ penicillin? We used to always treat strep with Penicillin.”  the attending Doc relayed at morning rounds on Tuesday. Having known Liam most of his life though (and spending one entire night a few years ago never leaving his room as she ruled out whether or not he had had a heart attack due to the sceptic shock just ravashing his blood pressure. Don’t worry. He didn’t) she added, “well I guess there’s no need to get cavalier about it though, this is Liam. Better wait on the Lab. One more day.”

By Wednesday morning’s bedside rounds, the lab sensitivities were in… We knew if we had an oral version of the antibiotics allowing us to bring Liam home.

It was penicillin.

Good Ol’ Penicillin.

It was time to go home.

We are all at home now, but It’s been a long week. A week of sleeplessness and worry. But also a week of bragging about the boy. Bragging and visiting with people who have spent time with Liam at his worst. People who have been there to help save Liam’s life multiple times, but don’t get to see him use his ipad. People that care for him for weeks post surgery but not for the weeks post Santa visit.

Like the proverbial pebble thrown into a lake, Liam has touched so many lives. Part of being Liam’s parent is knowing that every now and then Liam will decide it is time to teach a med school class to a rotation of new residents. To open the eyes of a brand new EMT.  To reach out to a nurse he may have taught something to in the past (one of his nurses this stay learned how to change a trach on him  a few years ago, the last time he was admitted, and under our supervision and permission.), or to teach a Nurse Practioner that maybe listening to the patient (or his parents) is just as important if not more important than what the numbers say.

We’re all at home now, and it has been a long week. A week of sleeplessness and worry. But I did so much bragging about Liam, and he visited with, so many people who have known him for as long as he has been alive, people who have helped him through his very worst times.On top of that, Liam met new friends. Friends who will go out into the world feeling the positive energy of meeting a charming boy like Liam and bringing that into their careers as nurses, and doctors and respiratory therapists.

We’re all at home now, and it’s been a long week. A week of sleeplessness and worry.

But on some weird level, and this is only because aside from the few hours in the ER Liam was basically comfortable the whole time,  I can’t say it hasn’t been a little bit worthwhile.

*****

Proud.

This morning I woke up in a fancy convention center hotel room about a half hour north of Philadelphia after flying there yesterday. A few hours later I gave a speech to a national meeting of more than a hundred pediatric nursing directors for the home nursing company that provides Liam’s nursing. The entire time I was there I was treated like some kind of celebrity. Initially afraid that my speech seemed to focus too much on the negative aspects of home nursing, my speech was very well received and gave me even more reassurance that Liam’s story, our story, has value.

It was pretty awesome.

Still wasn’t the most awesome part of the last 48 hours though.

That distinction goes to visiting Liam at school yesterday morning, a few hours before my flight out of town, to see him use his walker again for the first time in almost four months. Kiddo exceeded everyone’s expectations.

You have never seen true determination until you have witnessed Liam walking down a hallway.

IMG_2723.JPG

Before we could even strap him into the walker those legs started pumping and he chased me and his mom down the hallway about 50 feet.

I’m pretty proud of my speech, and the fact that I was even asked to address a national meeting of nursing company professionals, but seeing Liam walk again so well after fearing a big regression over the summer is cooler than anything I could have done the past few days.

It’s not even close.

Getting back to why I’m here.

At the end of June the Women & Infants Hospital Community Partners Workshop will be holding a conference called Dads and their Families: The Struggles, Triumphs & Supports of NICU Dads. I know this because I have been asked to be the event’s keynote speaker. It’s my first paid speaking engagement so if you were hoping to grab me to speak to your group or organization you missed your chance at getting all this for free. Now it’s going to cost you.

Later in the program I have also been asked to sit on a panel alongside area experts and staff from the state DCYF, and non-profit agencies. The panel is focusing on resources for dad’s. Oddly enough the event’s organizers don’t want me there to speak as Liam’s dad. They’ve made it clear, for the panel they want Eric Olson, writer for PressureSupport.com.  I’ve officially done it. I’ve fooled you all into thinking that I actually know what I’m doing. Ha Ha!

****

When faced with the decision to have Liam trached, Karin and I were understandably terrified, but we knew the science. We knew all the medical reasons, and the surgical reasons. Pulmonogists and respiratory therapists alike had already commented on our understanding of the issues that Liam faced to get home. We knew it was the right thing to do. In a hospital. In an intensive care unit. What we didn’t know was how that actually worked on the outside. How do you put that into practice? What does living at home with medical equipment look like? Should we get rid of our cats? What if the wiring in my house couldn’t handle the power needed for a vent and humidifier, and feeding pump and suction rig? How do we keep the house clean enough for this? Would we have to get one of those tents like they did in the movie E.T.?

The universe, in its abundance, sent us a sign. They sent us a family with an eight year old boy who had been trached and vented all of his life. Across the PICU pod and in the hospital for a routine bronchoscopy (all kids with trachs do it 2x a year, Liam just had his most recent bronch last tuesday). In the way that nurses do in a hospital, without breaking any privacy policies, introductions were made and we were able to chat with parents who had been there. Parents who didn’t have a bubble built around their house. Parents who were wearing jeans and t-shirts  — not lab-coats or nursing scrubs. Parents who looked tired but not haggard. Stressed maybe but not strung-out. An ordinary family living an ordinary life.

That first conversation wasn’t even very long. Only a few questions and it wasn’t the actual responses that struck me but the almost calm nonchalance of it all. The impression given that there really wasn’t even anything worth talking about. “I don’t know what to tell you man.” I remember the dad telling me “There’s really not much to it other than changing the plastic parts, and when it alarms you do what it says, by the time you get home, you’ll know what to do. If he needs suction, you suction and you hardly even remember that it’s there. It’s what we needed to do to get him home and out of here.” I’m pretty sure after that answer we just started talking about the Red Sox. A few hours after that conversation, after days and days of discussion, we let the attending doctor know that we were ready to proceed. Liam’s tracheostomy would come a few days later.

 

A month and a half after that, this blog would be born.

*****

Not every family gets another family across the pod in the PICU. Not every family gets someone to talk to. It is my hope that this blog can be that family for someone else, and thanks to all of the emails and comments from many of you I know that it has been, but I’ve gotten away from that mission for this space. Lost in the twice monthly 1500 word essays are all of the boring, everyday moments that make life with Liam, just that. This life, with Liam. It can be exciting, it can be sad, it can be as happy and as frustrating as any other life. When trying to imagine this life I needed to know that this was possible, hopefully, in sharing all it here I can show someone else who needs to know that it can be done.

So get ready. I’m going to work on showing you more of the boring stuff. The nitty-gritty.

Karin has been telling me that what I’m missing are the little pieces inbetween the 2000 word meaningful essay and the 140 character tweet lie the sweet spot of really getting to the little things. Postlets she calls them, and I think she’s right. So it’s time to start stealing that idea. (why not, I steal most of her photos for the blog anyway. like the one below.)

*****

Postlet the first: Yes, if you read my twitter feed you would have seen that Liam was in the hospital this week. Liam is fine. He had his routine bronchoscopy. The ENT surgeon likes what she saw, things went well and all the overnight blood tests during his vent assesment were perfect. Today marks a full month since Liam has had even a whiff of supplemental oxygen. The longest span without bottled oxygen in his life. Confirming that with blood gases while he was int eh hospital was wonderful.

 

Boom!

Postlet.

I’ll talk to you soon.

 

20140506-022729.jpg

Trach – A film by Sean Devin and Jose Cota

Hard to believe that we filmed this almost exactly two years ago, and yet it also feels like it could have been ten. Two years ago we opened our home to a film crew for a documentary being filmed highlighting the day to day life of three families with trached children. Not long after separate sections of the film were being shown to respiratory therapists and nurses and other pediatric health care professionals in training rounds about families bringing home medical technologies with their children. I already blogged about that cut of the film of only Liam’s footage here.

Even if you’ve watched that version, please, please, please take the time (14 minutes) to watch the completed film: Trach by Sean Devin and Jose Cota. The footage stitched together with the stories of Liam, Corinna, and Alia. The filmmakers did a wonderful job putting it together, and I am so very proud to have been a part of it. We’d like to thank the Ventilator Integration Program of Hasbro Children’s Hospital for thinking of us as a family worth representing our special needs community. And also to thank Sean and Jose for capturing and communicating what life at home with a child and a trach can be like.

 

We didn’t even know it had been finished until a respiratory therapist at the hospital where I work, and a few facebook messages to Karin from some nurses at our favorite children’s hospital had all trickled in on the same day. They had seen a film with Liam in it! I’m still not even sure where it was first shared or used but it’s out there now and I am happy that it is.

My only notes on the film are One- that it irks me to hear myself refer to Liam as “the Patient” in one sequence but you have to understand it was a teaching moment and we were trying to speak universally, and Two – that Liam was pretty good in the movie but for our part the star of the show really ended up being our cat Calvin making his film debut at about 13:05 and really hamming it up for the cameras.

Damn cat.

 

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.

Liam.

Is.

Fine.

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.

The Babysitters Club

It was only a few minutes. Barely half an hour as a matter of fact, but someone had to go get the pizza. So we took the long way across town, both of us, together. Without child.

No calling the nursing company scheduler, no need to involve the insurance company. No advanced degrees or scrubs anywhere. Just two grandparents watching their grandson while his parents left the house for a little while. It was the first time it’s ever happened.

There’s a few things left for them to learn and they still haven’t changed a trach all by themselves but my mom and dad have worked so very hard over the last 5 or 6 months to learn how to care for Liam so that they could babysit. Check out the picture that my mom sent us while we were gone, they don’t look nervous to me.

We won’t be hitting the cape for the weekend or even catching dinner and a movie just yet, but running cross-town for a couple of pizzas was a cool first step.

20130709-205844.jpg