hospital

A quick visit.

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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.

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Storify of a Surgery.

It’s been a long week. Karin had surgery and was in the hospital for almost four days. To add to that stress her experience was beyond awful. While I didn’t blog or write during the stay I did tweet. Below is the link to a storify story I put together using the tweets I sent during her stay and the instagram photos I posted included in the timeline. Please have a look. It’s multiple pages and storify can take a little while to load but I’ve already written the details in these tweets and I don’t have the energy to figure out how to imbed the story into a wordpress post. If anyone does let me know and I’ll repost.

So scared I had to write about it.

I don’t know what most parents fear. The big health related things. I just don’t know how to relate.

What if my child can’t breathe, and needs a machine or a tube? What if my child can’t walk and needs a wheelchair? or can’t talk and can’t tell me what they need? What if my child spends months in the hospital and will never be like all the other kids?

What if he’s different than all the other kids?

I don’t fear any of those things anymore. Doesn’t mean I’m all the way over them, but there’s no sense in fearing what is right in front of you.

Just gotta deal with it.

What I do fear that every parent fears is having my child taken away from me. To be told that I can’t be near him. Worse than just the being taken, being taken by people who presume to do it under the guise of knowing what’s better for him than I do, than his mother does.

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It took me three days to read the article. {part 1 which is linked below seems open to read for now, but part 2 is hiding behind the Globe’s pay wall. I’ll block quote some of the choice bits} Not because of length but it hit too close to home. I couldn’t handle it all in one chunk. I was reading about a family, a few families, going through something that crosses my mind far more than occasionally. Please give it a read. I’ll wait for you here.

A medical collision with a child in the middle

Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody

The first 12 paragraphs sent shivers down my spine and tears to my eyes. This is not a new fear for me. I have thought about scenarios like this for 5 years. Of the doctor who thinks he knows better. Of the resident just out of medical school wielding the POWER OF THE TEXTBOOK in their zealous pursuit of recognition from the attending doc, with my child as the apple. Of being railroaded because the stress and exhaustion of this life or another hospital stay, leave us a medical-record documented reputation of being “difficult parents”. Of the assumption that Liam’s inability to verbalize any pain or discomfort means he cannot communicate it, to us.

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I already know that many of you will send emails or comments that my fear is irrational and that something like this could never happen to us. That it’s apparent how much we care for Liam and no one could misunderstand our intentions. But things like this happen to families exactly like us. They happen far more often than I wanted to know, and even more terrifying, they happen so often so very close to our home.

Doctors disagree all the time over the diagnosis and treatment of patients, but Justina’s story reveals a new and remarkably contentious frontier in pediatric medicine. A difference of opinion among doctors at separate Boston hospitals escalated with stunning speed. Just a few days after Justina had arrived at Children’s on Sunday, Feb. 10, doctors were urging state child-protection officials to take emergency custody of the girl from her parents so that Justina would remain safe and get the care the hospital’s team recommended.

These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

Let’s all just waft past the infuriating, and insulting little tidbit about the industry’s pet name for this little maneuver to the sheer number of instances at this one institution about 45 minutes to our north. A hospital in which Liam has been admitted and put under anesthesia; at least 5 in the last 18 months. At least 5 families ripped apart by the very same people they ran to seeking help for their child. It honestly makes me hesitant to bring Liam there ever again.

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In Massachusetts, the Department of Children and Families investigates all child abuse and neglect complaints and is supposed to be a neutral referee assessing the charges against the parents. Many parents and their advocates complain, however, that the state agency, because of its lack of in-house medical expertise and its longstanding ties with Children’s, is overly deferential to the renowned Harvard teaching hospital.

And there it is. “Lack of in-house medical expertise”. Liam has seen tens of seasoned specialists, to say nothing of the dozens of residents and interns who have swooped in and out of his hospital rooms, and only two had ever treated a patient with Miller-Dieker syndrome before. Yet many (far too many) thought they knew better than us about what was best for his care when they read a few journal articles and their chromosonal translocation textbook. What are the chances that the Massachusetts Department of Children and Families is going to believe us instead of any jerk in a Children’s labcoat?

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The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

And here is where I laugh through my tears. Highly stressed and difficult to handle. you read that right. I’m beginning to wonder how many times I am referred to this way in Liam’s chart.

But it’s the second part that gets me. Liam has spent 5 years building a treatment plan with, as I’ve said, many doctors. Should I, or Karin, or Liam be punished for listening to and believing the diagnosis from the few doctors we have built up a level of trust with. These parents are being vilified for having the audacity to question doctors who have had just days of interacting with this patient. Days instead of years, and since the parents are not instantly convinced that ALL OTHER DOCTORS YOU HAVE SEEN BEFORE ARE WRONG it apparently can be cause to remove children from their families.

WE ARE BOSTON CHILDREN”S AND WE HAVE SPOKEN!

uh-huh.

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As tensions with Justina’s parents were rising, Newton reached out to Korson at Tufts, [the diagnosing physician who had cared for Justina] though not for his views on Justina’s medical care [emphasis added by me -eric]. Her call was primarily to tell Korson that Children’s had begun investigating the Pelletiers for possible medical child abuse. The only other contact with Korson had come Monday, when a Children’s neurology resident called him for a quick summary of his treatment of Justina.

Although inherent in these cases is the suggestion that doctors like Korson were giving care that a child shouldn’t be getting, Newton, like many in her field, generally saw the physicians as innocent victims who were misled by remarkably persistent and deceptive parents — almost always mothers.

If there’s one thing I’ve noticed about all of the special needs parents and families I interact with, it is how many of them are deceptive and misleading. I guess it’s just become the stereotype now.

And if you do follow the advice of all those bad doctors you saw before you came here to Children’s? It’s not their fault, they were all probably just hoodwinked by you Mom. More cause to take your kids away.

I’m making jokes and getting sarcastic now. It’s the only way I’ve been able to write this piece.

I’m trying to hide my anger.

Because behind all that anger is the fear.

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I realize that the families in the article have different diagnosis and that a big chunk of it focuses on one diagnosis in particular, if the hospital can railroad over a family where the 16-year-old patient is even able to demand a lawyer (a demand that the article implies went unfulfilled) what chance does Liam have without Karin or myself at his bedside?

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Let me be clear that I am not denying that there are cases of “medical child abuse” out there. When Doctors see red flags of this, even in all of the cases outlined in the article; even in our own case, it should be investigated by social workers and appropriate personnel. What I find most horrifying and hard to accept is that a.) in less than three days and b.) based on the recommendation of a Dr. barely 8 months out of medical school and c.) without the consultation of Justina’s primary care physician or specialists, Boston Children’s had the power to have her parents stripped of their rights. If, as in Justina’s case, a judge needs to hold a hearing to allow me to even visit Liam in the hospital, all based on the say-so of a doctor who does not know him, I am going to be facing far worse legal troubles. Like, the charges for when I punch the poor orderly, intern, or security guard tasked with forcibly removing me from Liam’s bedside.

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I’ve worked hard this year to position myself in a place to try to change my career sometime soon into the field of patient advocacy. My work with the Women & Infant’s Hospital Patient and Family Centered Care Advisory Council has shown me that it is what I was meant to do. Now this article has shown me that I need to tweak my focus a bit. This is what I need to be fighting against, and in 2014 I plan on figuring out how to try to accomplish that. But it doesn’t make any of this any easier.

There’s no way for me to tie this one into a nice little conclusion for you. This post doesn’t have a happy ending and writing about my fear didn’t magically make it all go away. I’ll probably always be afraid of this and perhaps I’m overreacting but I’m going to stay vigilant against this happening anyway because the alternative still keeps me up at night.

And I’m betting it always will.

A Big Day for the Olson’s.

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It was a month ago now,(I know, I know, I’m sorry) but there we are, only a few minutes before taking the “stage”. The Schwartz Center Rounds at Women & Infants Hospital. After my 20 minute speech, Karin, Liam and I would move to the big comfy chairs for a half hour of the Oprah treatment with a moderator and then open the floor to more questions and some discussion from the audience.

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The event was marketed in flyers and emails around the hospital as

Liam the Lion: Quality and Innovation in Nursing Care, One Hospital Family’s Story and even went on to promise actual “Learning Objectives” such as

  1. Discuss the challenges faced by caregivers when colleagues become patients.
  2. Identify strategies to protect and preserve the confidentiality of a hospital employee or family member who is a patient.
  3. Identify the aspects of care that are most effective in helping families cope with a difficult diagnosis and lengthy hospitalization.

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And if you think that isn’t intimidating enough, imagine how I felt when we arrived and I found that there was an evaluation sheet for each attendee to fill out in order to receive their continuing education credit.

“Better bring your A game Bubba.” I turned and said to Liam when we saw them. “Looks like we’re being graded.”

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As it turned out, I had nothing to worry about. Once I got started and was a slide or two into my presentation I started feeling very comfortable despite a packed room that even included a few people standing since we had run out of chairs (which I know the room started with 75). I don’t have much public speaking experience but on that Tuesday afternoon I felt like it may just be something I could get pretty good at with a little more practice. I think it was the first laugh from the audience, at a time where I had hoped they would laugh, and the nervousness of inexperience started fading away.

The only fear left to overcome was my own feelings of illegitimacy. What business did I have to be speaking in front of such a large crowd of Doctors, Nurses, and Hospital Administrators with any kind of authority? All I had to do to get over that silliness was take a quick look to my right at the real star of the show.

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Liam was incredible. He stayed awake and alert throughout the presentation and seated between his mother and I he really did steal the show which I’m sure will surprise none of you. Karin was equally impressive and gave thoughtful and insightful answers to difficult questions about so many of the layers of complexity to our family’s relationship to that hospital.

Liam’s story has value. Our family’s story has value. I’ve learned this through the outpouring of support and friendship from people, literally, all over the world that have reached out to me because of this blog. This blog and all of your support is what gave me the crazy idea that I could even do that speech. It’s what gave me the confidence to throw my name into the ring when the hospital Patient and Family Centered Care Advisory Council put out a call for  new applicants. It’s what has opened my eyes to the possibility of using our experiences in the health care industry, in the special needs community, and our new journey into special education to share, to advocate, and to speak out for the countless other families like ours who don’t have a voice, or the energy, or the confidence, or the time to do it.

It may sound like I’ve gotten a little full of myself here, and I suppose I have. I have to, because if I really am going to make things like patient advocacy a bigger part of my life (and someday hopefully turn this passion for the subject into a future career) than I need to go into it knowing and believing that I can. To give myself legitimacy in my own head before I can expect it from others. Until the reaction I got from that presentation (including more than one request for a repeat performance) I wasn’t sure in my own head that it would be possible.

But, now? Well, a few weeks after the presentation the Schwartz Center emailed me the results of those evaluation cards. Turns out Karin, Liam & I got all A’s!

BRCH/OBSV

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We got new phones. Our old phones started acting wonky enough that it was becoming imperative, so we splurged. For what it’s worth, we went with iphones and that decision for me was totally based solely on the quality of the camera. I’m glad that I did. Not only for the quality of the camera itself but the ease with which I can edit those photos in my phone.

They arrived just in time for Liam’s hospital stay which ended about an hour and a half ago. It may sound silly but playing with a new gadget like this is exactly the right kind of activity to pass the time by Liam’s bedside.

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The hospital stay was planned. A routine bronchoscopy brought us in but we figured why not use the opportunity to take care of a few other things so Karin coordinated a neuro consult to adjust his seizure meds and an ultrasound for hematology to check on that thrombosis from last year piggybacked on top of the vent assessment that was keeping us there for 24 hours anyway.

The blood clot is completely gone, we’ve got a new schedule and a slight weight adjustment to his seizure meds, and while we didn’t need to make any vent changes (we did that about 6 weeks ago) we were able to confirm some fantastic blood gases overnight. In that time I played with my new phone and got comfortable enough with it to be able to shoot, edit, and post photos right here onto the old blog.

So, you know, productive trip.

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Fighting Nemo: The Blizzard of 2013 Part V: 26 Hours of Hell

The decision to come to the hospital is never made lightly. While it’s easy to sit here after the fact and say how much safer Liam was in the hospital with all of their heat and electricity and oxygen supply. There’s a significant case to be made that Liam can be much more UNSAFE in the hospital with all their Flu patients, and MRSA cases, and over-eager interns and residents. So while it looks like a no brainer on the outside, finally making the call to head to the hospital was scary not only for the ride but also for all of the very real and ever-present risks that we would face while we were there.

The ride was uneventful. We took it slow and took the route that we knew had the least amount of hills. “The Plan”, which we would spend the next 13 hours amending on a minute-to-minute basis, was at this point just get to my hospital. The hospital I work in. Once there, we would be able to find a power outlet and some warmth in my office at least, and I would have a few hours at least to try to find an oxygen tank. While I know pretty much everyone in our little hospital, including all of the respiratory therapists, you really can’t just ask for bottled oxygen if you’re not a patient. They don’t just give the stuff away.

Wait, wait, wait. I think I forgot to mention something. You see, this all happened on a weekend. My weekend. My weekend to work. Our three person management team rotates to work every third weekend, and so regardless of how things had worked out with the power at my house during the storm I was going to be driving to the hospital anyway. I had hoped I would be leaving Karin and Liam in a warm and well-lit house to do it but you can’t always get what you want. That day, we just had to try to get what we needed.

I dropped Liam and Karin off at the front door so that they could get their temporary visitor badges at security while I moved the car to the staff parking lot. They were met with enthusiasm and smiles by people who remember his own hospital stay there 4 years ago as if it were the day before. My own boss met us and had arranged with the NICU department manager to set us up in an unoccupied family room for a while. For a few hours at least we had a place that Liam could lay down. Only minutes after getting Liam comfortable it was time for me to put on my other hat and go manage the department, so I did to Karin what I had been doing to her the whole night long every time I went outside to shovel snow, I left her and Liam alone. Over and over again.

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For the next 6 hours Karin and Liam stayed warm and dry in that family room. Watching the local news coverage continue to plead with people to stay in their homes despite the now bright sunshine since roads all over the state were still impassable. It was obvious that this oasis of sorts was only a temporary solution to a greater problem as the reports now were of the possibility that our power would not be restored for days. A new plan had to be made as we tried to figure out where we would be able to sleep for the night.

Trying to coordinate with family and friends to decide on shelter for my family while at the same time trying to staff and manage the food and nutrition department of the hospital I was near breaking at around 4pm. We’ve been through some hairy medical moments and situations but this was the most frazzled I can ever remember being. I closed my office door. I put my head in my hands and I cried.

The temporary shelter became even more so when a family of 6 who had every right (if not more right) to that family room all came in. The family of a patient in the unit at the time it was us intruding on them and not the other way around, but it was their coughing and sneezing that made co-existing there impossible. Last august we took a healthy Liam into a hospital to adjust his diet of all things and when he caught a bug we didn’t end up leaving for 37 days. I’ll be damned if I was going to let something like that happen again. Karin called my office to let me know what was going on and had Liam packed into his chair and downstairs back in my office before the words could get out of my mouth.

Karin was at her breaking point too by then. With tears in both of our eyes, I tucked our little family into my department’s bookkeeper’s office which I knew wouldn’t be used by anyone until at least monday. Fold up canvas cots were readily available for staff all over the hospital since so many had been snowed in and I grabbed one of them for Liam. It was less than ideal and not nearly the solution we were looking for. It really was time to throw in the towel. We knew at that moment what we had to do.

“Hi. This is our son Liam he is a frequent flyer here and as you can see he is on a ventilator. He is not in distress, he is not sick, he does not have any symptoms of anything and does not need treatment but we have no power and no heat and more than anything now we need an inline humidifier because after about 16 hours  on his HME we are going to dry out all of his lung tissue on his portable equipment. He needs a half liter of oxygen and our portable tank is now empty. Is there any way we can be admitted for the night to keep him safe?” Karin has game when it comes to breaking down a situation for an ER nurse.

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Whisked away and into an ER room we only had to repeat the story a few more times. Once to the nurse who was awesome, both at getting us whatever Liam needed and at telling us what we wanted to hear. Specifically that we weren’t being a burden or getting in anybody’s way of more deserving medical cases. I know when Liam is admitted long-term we jokingly refer to it as the Hasbro Hilton but it is The Hasbro Children’s Hospital and most certainly not a hotel.

Confident that Both Liam and Karin were at least somewhat comfortable I made my way back to work (about a block away) to finish out the shift and ensure staffing for the early morning responsibilities. With transportation around the city completely shut down there were plans to be made and contingencies to be set up.

I mentioned over-eager residents at the start of this post. They just can’t help themselves. If a patient is in a bed there must be something they need to do, and so only minutes after having our whole ordeal explained, including multiple mentions of his robust health and significant lack of symptoms of ANY KIND (!!!!!!!!) promptly ordered a sputum culture when she spied Karin wiping a little drool and snot from his face and mouth. Drool and snot are ever-present in our lives here and should alarm no one, most of all an MD, but despite Karin’s protests a few minutes later a CNA left the culture kit on the counter for the nurse to administer the test on her next visit to the room.

So Karin swiped it.

Knowing that simply the lack of the kit in the room could easily delay the test being sent off for hours and hours, Karin grabbed the jar and the applicator and catheter and threw them in her bag. Just the act of taking a sputum culture will without a shadow of a doubt keep us here at least 3-5 days while we await growth only to be positive for his colonization of Pseudomonas. (trach and vent people will know) Then we try and treat a gram-negative colonization and who the hell knows how long this hospital stay lasts? Before you know it, a month has gone by. Nuts to that, we’ll figure a way out of that no matter what it takes.

The ER doctor made her way back into the room and Karin explained everything I just put into that last paragraph. They agreed that she would stop ordering tests provided that nothing that Liam did seemed out of the ordinary. Crisis averted.

At about 9pm, and now going on 24 hours since the lights went out at home, I closed up shop at work and made my way back to the ER for the night. Trying my hardest to keep a smile on my face I had Karin take a picture of my message to our good friend Nemo for putting us in this position. Thanks Nemo! Here’s my salute to you.

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Once I got there, the news that we were being admitted to the hospital onto the 5th floor was welcome news and an hour later we were moving all the things we carry onto the elevator to our new digs for the night. A big double room that had no other occupant at the time but also afforded us enough space for his wheelchair, a vent table and two recliners(!) it would do for the night, and in the morning we’d figure out the next step. Hopefully someone we knew nearby would have power and a clear enough road to get there.

Liam was now snug as a bug in a big boy hospital bed. His ventilator puffing away alongside him and his own fluffy blankets we had carried with us all day atop. He had handled this whole ordeal better than both Karin and I did. He handled the day better than I ever could have hoped he would. The kid’s a trooper I tell you.

The attending doctor on the floors just got it. She got it in a way that most docs don’t and after assuring us that we were probably the most worthy admission she had had all night, explained that her own treatment plan for Liam was to close the door behind her and not see any of us until the morning when she would help us by calling the power company to explain why my house needed power immediately. Knowing that a call like that when close to 200,000 people were without power would be fairly silly we thanked her anyway and said that just giving us this room for the night was more than enough. She made a joke on her way out of the room that she just knew that 10 minutes after she filled out all of her admission notes and paperwork we’d probably get word that the power was back on. Thinking it impossible we all had a good laugh with that.

It wasn’t exactly 10 minutes. More like 20 but when I got the grainy, blurry, and dark picture message from my father’s outdated flip phone I recognized what it was immediately.

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WE HAD POWER!

Only about 6 blocks away, when my parent’s power came back my dad (literally) ran over to our house to check it out for us.

After hugging each other and smiling enough that if we had any left there probably would have been tears, I ran to the nurses station to catch the doctor. On another floor already the nurses could already tell why we needed her.

“Do I have to fill out discharge paperwork now?” Our assigned nurse asked half-joking and half annoyed that she would have to get all that paper work done this late at night.

“You have to do what you have to do but I am going to go get Liam’s van and we are getting out of here to go home!” I said with a smile.

That’s when Liam had had it. That’s when it all caught up with him. That’s when Liam decided that he was tired of the cold, and tired of his chair, and tired of his parents, and tired of being anywhere other than his bed or his couch. That’s when this kid of ours who has been through some of the most painful medical situations I have ever witnessed and done so without even shedding a tear, had his longest, loudest, and most severe toddler-temper-tantrum ever.  From the moment Karin pulled the blankets off of him in that hospital room until we got him inside our house and lay him down in his crib 45 minutes later Liam cried. Not from pain. Not from sickness. For the first time I saw my boy reach his breaking point on being over-tired, and overwhelmed by it all. Luckily for us he cried himself into exhaustion and by the time his twenty-minute nebulizer treatment was finished he had drifted into a calm and peaceful and most important -a comfortably warm, sleep.

Liam was overwhelmed, Karin was overwhelmed and I was most certainly overwhelmed, but we made it. We made it together just as we make it through everything else life throws at us.

It may not be pretty at times but we’ll always make it through. There we were, stressed out, drained, and unable to fully comprehend what we had been through until days later. 26 hours Hell but all we needed to get through it was each other.

And so it ended just as it had begun, with a sleeping boy, Karin and I huddled together on the couch, only on this night, I didn’t even have those delicious brownies around to comfort me.  With chocolate chips in them dammit!

 

*******

And that’s our story. There’s not much more to say than that. Like I said when I started this tale, I have been living in the shadow of Blizzard stories my whole life. Now I have my own to share. Man, my grandkids are going to get bored hearing this one over and over and over again.

Thanks again for hanging in there.

When Care is Always Intensive

“Well we’re talking about maybe getting you guys upstairs tomorrow.” Liam’s pediatrician seemed so excited to tell us.

“WHAT?!” I said. “WHY WOULD WE GO UPSTAIRS? WHO SAID WE NEED TO GO UPSTAIRS? IS THE PICU FULL?” I could feel my chest puffing up as I got louder. I took a deep breath. “Do we really have to go upstairs?”

We could tell by the look on Dr. F’s face that he was not expecting this reaction at all. I’m sure that for 99 out of 100 families moving upstairs and out of the Intensive Care Unit is a positive step in which to celebrate but that’s just not the case with us.

No, for we are the 1%.

We walk by the white board every day. Two pods. Eight rooms a pod. More than four blank spaces on the board means we can take a deep breath. There usually aren’t that many admissions in a day. One or two blank spots and the worry starts. One or two ER traumas and out the door and into the elevator Liam goes. By the time Dr. F came around that morning he gave voice to a fear that had been brewing for over a week.

Dr. F, taken aback by our objections, stated his case. He’s off of the pressors and with the septic shock resolved and the fact that the antibiotics have run their course we are just in a wait and see stage for when his G.I. tract will heal and start digesting food again. The severity of the shock basically shut down the function of his gut completely and there’s really no telling how long it will take for things to normalize. With the acute illness resolved Liam was closer to his baseline than not. Day to-day stuff is intermediate care not intensive and Liam was doing well enough to be managed by our pediatrician’s staff not intensivists. Valid points every one but it was missing the forest for the trees. The decision to go upstairs for Liam shouldn’t be made by the top-level of medical team effectiveness but the minute to minute practicality of caring for Liam’s complexity of care.

“Liam can’t go upstairs!” 10 days of stress and worry bubbling to the surface along with the fear that I wouldn’t be able to change anyone’s mind to stop it. “If he has to be in the hospital then he has to be in the unit. He’s just not safe up there.”

His hands in the air in a show of surrender Dr. F stopped me as my voice started to rise “well that’s a conversation you are going to have with the medical team here, I can’t totally make that decision but that’s what I gathered in talking to the attending. So you’ll have to explain this to them.”

” I absolutely will.” I noticed that my hands were balled tightly into fists by my side.

The situation diffused, at least for a moment, Dr. F wanted to know more “Now, unsafe? . . . what’s going on?”

******

Back when swine flu and H1N1 were all the rage Liam had an unrelated bout with pneumonia that brought our little 10 month old back to the PICU only a month after our big long first stay there when Liam was trached and his bowel operated on. After 109 days we had become experts at Unit living but had never seen what was lovingly called “the floors”. That mythical place that starts two stories above our comfort zone. With an outbreak of this new flu the unit was packed pretty tight and even we recognized the need to get away from these germs. Since all signs were pointing to Liam being discharged in only a few more days we agreed that we should check out and move on up to the 4th floor.

The nurse was nervous right off the bat. The ventilator chugging along taunted her from Liam’s bedside. As I taped his spare trach along with a smaller one by the bedside for the possibility of an emergency trach change I let her know where I was putting them. “I’ve got the spare trachs here, here’s his 3.5mm and another one a size smaller in case there’s some swelling. I’m putting them right here by the ventilator.”

“Oh I don’t know how to change something like that.” she said it with a giggle, as if I was a little bit crazy for thinking that she would know how to change a trach.

“Well, what would you do if his mother and I aren’t in the room and his trach comes out?” I asked her, almost fearing the answer. Trachs pop out. More for some kids than others but it is an inevitability that must be prepared for. How can the nurse assigned by the hospital to care for Liam for the next 12 hours NOT know what to do if his trach comes out?

“Oh, Don’t worry, I would just call a code blue.”

To which I immediately turned to Karin and exclaimed “One of us will be in this room every single second until he goes home!”

A code blue.

Let me address that for a second. I’ve seen a code blue before. Yes, a code blue has been called on Liam before. It is exactly what it looks like on TV. So rather than calmly re-inserting the trach and tightening the velcro ties on the back of his neck something I have actually seen him sleep through(!!) he will be laid flat, surrounded by at least 8 people, increased oxygen flow, his clothes torn off and who knows what other overreactions, not to mention the time involved between calling the code and assembling the players. Which one sounds less traumatic to Liam? In the unit every single nurse is trained and capable of maintaining a trach. Upstairs? Not so much.

I am NOT saying that she was a bad nurse. I am saying that she lacked the training in the skills necessary to care for Liam. I am sure that she and the half-dozen other nurses who have been assigned to Liam but admitted to us that they don’t know anything about trach care (we have met 2 upstairs who do have trach experience and both of them were AWESOME.) are great nurses for what is expected of them upstairs. I just think that there should be a skills assessment checklist matching the skills necessary to each patient’s care with the nurses who have proven that they have those particular skills. If Karin and I are going to be the only experienced trach care hands in the room we might as well just stay home. Teach me how to drop in an IV and we are all set.

*****

“So do you guy’s have any questions?” Over the years we’ve come to know all of the PICU’s attending physicians pretty well and they all know how much I like to talk and ask questions during rounds but I don’t think she was ready for what I had to say that morning. It had only been a short while after Dr. F came by and dropped the upstairs bombshell on us. In the interim Karin reminded me that if I start out angry and loud then there’s nowhere to escalate to if I didn’t get the answer I needed. As usual she was right and so I chose my words carefully staying away from feelings and impressions and instead relaying the many specific incidents that would prove my point.

“Our pediatrician came by to let us know that there has been some discussion about sending us upstairs.” My voice cracked a little and I could feel my cheeks get flush as I held my anger and I tried to remember to keep calm. “You can’t do that to him. Liam has to stay down here. I can’t let you send him up there, so I need you to listen while I plead his case.”

I was getting used to that taken aback look in doctor’s faces that day.

*****

There are also legal and policy reasons why Liam should not be up on the floors which I understand the need for but Liam’s care sometimes doesn’t fit those rules. On another admission where we ended up riding out the last day and a half of Liam’s stay upstairs to make room in a full PICU Liam had a seizure in the middle of the night. Again, not surprising or even a big deal. Days without seizures are the strange ones for us. After alerting the nurse that he was seizing I checked the time on the clock and began counting minutes until it was time to medically intervene according to our careplan. The nurse ran out of the room to page the residents so that they could write an order, put it into the computer, have pharmacy fill the order or hope that the drug we need is already in the drug cart for this side of the floor, then bring the medicine and finally administer it. 25 minutes later, when the residents finally made it to Liam’s room to asses the severity of the seizure they found a sleeping baby boy and a frustrated father cleaning up the DIASTAT syringe and surgi-lube packet a full 15 minutes after I had decided to administer our home med that we had in our go-bag rather than wait on all of them to get there.

Let me tell you, hospitals do not like it when parents administer their own home medicines to admitted patients at all. They made that apparent.

Let me also tell you, I don’t like it when hospital policies prevent Liam from receiving the care that he needs and deserves in a timely fashion at all. I made that apparent too.

In the PICU each room has a medicine cart that also has a lock box in the top drawer where emergency medicines can be kept in the room. You know, like FOR EMERGENCIES! If Liam has a seizure here in the unit our nurse (who will have no more than 2 patients assigned as opposed to 5) can call out to a resident (at least three will be within ear shot at any time as opposed to 5 dr’s covering two floors of patients.) who can then say -“…give him a dose of adivan” – the nurse can have it drawn up and ready to administer and all of that can happen in under the 5 minute threshold of medically treating a severe seizure in Liam. The longer you wait after that 5 minutes, the harder the seizure is to break, the higher the doses needed to stop it and the more long-term the fog Liam is put into. Again, how is this beneficial to Liam and his care? It isn’t. In fact a case could be made that it puts him even more at risk on top of whatever the acute illness we are dealing with at the time is. Phenobarb can cause constipation after all.

How we treat seizure issues can affect GI issues. GI issues can impact respiratory issues, Discomfort from either can in turn trigger more seizures and round and round we spin. Managing it all takes a level of subtlety and observation we just haven’t found possible outside of the unit.

******

I could see the residents shaking their heads in agreement and the nurse assigned to Liam that day also. The attending who has always kept her impressions pretty close to the vest anyway listened patiently as I relayed three more incidents (including the incidents briefly mentioned in this post about another nurse who had no problem admitting to us, his parents, how nervous she was to take care of Liam) where Liam was affected up on the floors by things that would never happen in intensive care. Things that the staffing, training, or better communication found in the unit could have helped us to avoid.

I kept my cool, looking over at Karin when I needed to calm my voice. Given the amount of time we spend in the hospital Karin and I are pretty easy-going. It is far too easy to take out all of your stress and worry and anger by being very demanding and confrontational. Karin and I have seen it plenty and done it some but we work very hard to not let that happen. We almost never make demands but this was not a time for being polite. It was a time for showing just how serious this was to us.

“If Liam absolutely has to be released from the unit and brought upstairs until the ileus resolves, since we don’t know how long that could take, I would rather we book an O.R. have surgeon put in a port and send us home with TPN, (nutrition of dextrose and other vitamins and nutrients given right into the bloodstream) because he would be safer at home then up there.” While Karin and I are fully willing to do this it is an extreme solution but I knew that in putting out there they would know just how much I didn’t want to go home. (If it comes to the port thing, which at this point is unlikely, we’d be all over it). I knew I had to wrap it up, I just didn’t know if it was going to be enough and the poker face on the attending wasn’t helping. “You can’t let him go up there. He needs to be in the unit.” Karin squeezed my hand. “So that’s it. I just had to make sure that you heard our case for Liam. That’s my case.”

“Well it was well stated.” The attending gave me a nod without inferring which way things would go and they all moved on to the next patient. Karin and I felt better that at least our feelings were out there now and if nothing else we still had 24 hours to give the same speech to whoever else would listen.

No one else even asked.

Instead the attending spoke for a while with two of the nurses from the unit who used to work upstairs who helped confirm whether or not it was possible for these things to happen up there. Apparently the intensivists have little exposure to the upstairs operations.

*****

Listen, I know that this hospital like the rest of the world doesn’t revolve around Liam and his needs. Should the unit fill up with cases that the doctors deem more severe than Liam’s then we will of course keep a watchful eye over him, and even more importantly over his nurse, upstairs on “the floors”, but given the absence of a step-down or intermediary care unit anytime there is a blank space on that white board and he is in the hospital Liam deserves to be in the unit. I wouldn’t be doing my job as Liam’s father and co-advocate if I didn’t fight as hard as I could to get nothing but the best care possible out of every person who comes in contact with him.

I love this hospital. I do. They have saved Liam’s life more than a few times and for that I will always be grateful. We have met, and continue to meet, people who will have a lasting impact on our family’s life. I may get annoyed and downright angry at some of the things that happen here but they do for the most part have Liam’s well-being at heart even if they get a little confused as to how to provide it.

******

“Hey you guys” Dr. F was back the next morning checking in before rounds. To this point no one had mentioned my little speech at rounds the day before and we still didn’t know if it had worked. “how’s everything going down here. So I uh, . . . talked to the team and there will be no more talk about going upstairs.” He said.

” I just had to plead my case for Liam.” I said, defending myself a bit for some reason.

“Well I guess you did a pretty effective job of it.” He smiled ” I don’t think you have to worry about that for now. No one will be talking about going to the floors anymore.”

What a relief.

Because with a kid like Liam, care is always intensive.

If Liam can fight as hard as he does . . .

Worrying about the daily why’s and what-for’s of an intensive care unit are difficult enough without rehashing them afterwards in a blog post, but not posting anything at all isn’t fair to those of you who care so much for Liam and simply want to know how he is doing. So before I get to the rest of this post I’ll sum up…

Liam has had a bunch of boring days. Given the severity of his acute illness at the start of this admission boring is definitely a good thing. He is awake and alert for longer periods, he is back on his home ventilator, his labs and other vitals are unremarkable (my favorite hospital word). At this point we are still far from getting out of here but much of that time is for his body to heal. The septic shock wreaked havoc on all of his organs but his G.I. is so sensitive and has such a history that it will take some finesse to get his gut started again. I’ll do a big picture recap after the admission is over if people are interested.

Karin and I are tired but coping. As Liam heals being in the hospital gets more and more frustrating. In the beginning there is no room for worrying about when/if you will be discharged or how long it will take to get there. Acute illnesses call for acute focus on the here and now. One day, one hour, and sometimes even one single breath at a time. Like a carrot on a string, once the light of home is visible at the end of the tunnel it becomes harder and harder to forget, ignore, or deny the fact that we are not in our house as a family.

At the end of the day though, I think that Karin sums it up best when she says that if Liam can fight as hard as he does to get better, then we can too.

And as usual she’s absolutely right. Considering what Liam has gone through in the past three weeks I am in no place to complain about being tired or getting sick of hospital food.

We will get through this.

We always do.

That survival though is wholly dependant on the routine. The hospital schedule.

A few months ago people seemed to enjoy my post about our family sleep schedule and how we manage ’round-the-clock’ care. I can only assume then that there is some interest in what works for us to bring order and coverage to hour after hour of the constant stresses in the PICU. Overall, Liam has spent a little over a year of his three and a half in the hospital. (That year is actually less than anyone could have predicted when Liam was trached and vented. We have been very lucky.) So this is what works for us, but we have a specific set of circumstances that make this possible so your mileage may vary. I work in the building next door to this hospital and have supportive co-workers who understand if I need to run next door throughout the day. Also, my work schedule is not 9-5 which also makes things like attending Dr’s rounds every morning possible. And of course, we do manage to scrape by without Karin working outside the home which save for the fact that Liam is our only child, is the most important reason of all that we can make this work.

Without those specific circumstances, being at Liam’s bedside at all times just would not be possible and I can’t even imagine the difficulty most parents have spending large chunks of time away from their child in an intensive care unit while they head to work or home to their other children. Don’t get me wrong, the overall staff in the unit are more than qualified to keep every child safe and fairly comfortable when it is not possible for a parent to stay day or night but it is very important to Karin and I that if at all possible, anytime Liam wakes up in a hospital bed either his mommy or daddy (or both) are there to comfort him. That’s why we developed the hospital schedule.

When Liam is in the hospital the whole world shrinks down to revolve (for us anyway) around his room. Months, weeks, and ultimately even what day of the week it is become irrelevant. Once Liam is admitted Karin and I revert to a kind of 48 hour “day” rotation, alternating who sleeps in the hospital with Liam and who gets a few hours of sleep in our own bed.

We’ll start in the morning…
8:30 – 9am — This seems as good a place as any to start. This is when whoever spent the night in our house will arrive with coffee. By this time whoever spent the night with Liam has most definitely been awake since at least the nursing shift change at 7am. Liam’s labs have been drawn and a big bunch of his medicines given at 8a. The residents, and his outside pediatrician have already come by to asses any changes and Liam drifts back to sleep.

9am – 11am — Dr.’s Rounds. I love rounds. Even at Liam’s sickest I love being heavily involved in the resident’s and attending physician’s discussions about diagnosis, treatment, plan for the day. I also enjoy questioning everything that gets brought up. Questioning and questioning until I am sure that I have a strong understanding not only of what the team ultimately decides for a plan but additionally why that was the decision. If Karin and I are lucky rounds ends early enough that we can run down to the cafeteria for some breakfast. (breakfast in any hospital cafeteria is going to be the best meal they offer. Just trust me on this one. You can even skip lunch if you get a big enough breakfast.) Then there is just enough time for whoever spent the night in the hospital (last night it was Karin) to run home for a quick shower to return to the hospital in enough time for me to head out to work.

11am – 3pm — Sometime between 11 and 12 I mosey my way over to work and try to concentrate on something other than Liam with varying degrees of success. While I am gone Karin coordinates the information and communication of the PICU residents, attending, surgical team, neurological team, G.I. team, Liam’s home pediatrician, nurses, respiratory therapists, radiologists, case managers, child life advocates, and environmental services staff. Sure, I guess not every single one of those come through the door every single day but pretty damn close and Karin keeps it all together. I said in my last post that the hospital can be a game of telephone which makes the consistency of Karin handling the communication between departments so important. I don’t know how she does it. While I’m running back and forth between work and here there are times when Karin will be in this tiny little room for stretches as long as 26 hours. I would go crazy. Truly, totally, batshit crazy.
3pm – 8pm — Things tend to calm down a bit later in the afternoon. After the lunch rush ends for me I take a break from work and run back to Liam’s room for a visit and an update. Karin and I (along with whichever dr’s need to be involved) discuss any test results or changes to the plan. After a nice little break with Liam and his mom I head back to work. Generally consults aren’t going to happen after 5pm and so this is when Karin and Liam will snuggle as much as they are able. Yesterday was the first time in nearly 2 weeks that Karin was able to hold Liam. Before that it has been lots and lots of hand holding and kisses.


8pm – 10pm — My shift at work ends at 8pm and so depending on what we served in my cafe I usually bring dinner here to this hospital. If not then we’ll run downstairs to this hospital’s cafe and grab a quick bite before returning to Liam’s room to watch TV and chat while I get my snuggles with the boy in. We chat with the overnight nurse while they give his 8pm and 10pm meds. (because of Liam’s limited IV access and his need for IV nutrition while we wait for his gut to heal it can take a long time to get all of his meds infused. By the time his 8pm meds are in, it’s time to start giving his 10pm’s. All told, nighttime medicine can be about a three and a half hour process.)

10pm – 12am — Barring anything crazy happening – 10:00pm is when whoever is going to the house leaves. For a few hours whoever stays in the hospital will read by Liam’s bedside until he falls asleep before converting the uncomfortable easy chair into an uncomfortable cot. When we are confident that Liam will stay asleep (or at least stay comfy and calm if he wakes) then I’ll shut off all the lights in the room and try to get some sleep. The nurses generally try to be quiet enough that some sleeping can be done but it really depends on Liam and what he decides to do overnight.

6am – 8:30am — The early morning rush consists of the daily blood draw for labs so results can be ready for rounds, the resident assessment for rounds. Safety checks of med lines for the nursing shift change and more often than not a visit from the rounding partner from Liam’s pediatric practice. Between 7:30 and 8:30am the complimentary breakfast cart makes its way through the unit and a small cup of coffee makes do until whoever went to the house the night before can return with more ammunition.

Lather.

Rinse.

Repeat, alternating which one of us stays here in the hospital with Liam.


I should mention that when the stars align in just the right way — perfect nurse who we trust, perfect resident on-call who has experience treating Liam, and of course how Liam himself is feeling, — Karin and I very occasionally leave the hospital together. More often than not if this does happen it is only for a few hours. Just long enough to get home and throw a load of laundry in the washer or maybe for a quick dinner at a restaurant! Even more rare, as in twice in the last three years rare, if all those things happen we may even both go home overnight just once to give ourselves a break and remind ourselves that in addition to being Liam’s parents we’re still also a couple. I’ll be honest and tell you that I am hoping for one of those situations soon. It gets frustrating when the only time you see your spouse is in the least private place on the planet.

And that’s what works for us. It worked for us during his 109 day stay here in 2009, his 40 day stay here last year, and the half a dozen or so stays of 5 to 15 days in between. It will work for this stay no matter how long it goes on.
It has to.

Because If Liam can fight as hard as he does to get better for us, sacrificing a bit of sleep together is the least we could do for him.

The Rules

You already know about one of the words we don’t say in the hospital.  You know, the other H-word. It is not alone. There are others. Like the Q-word, as in “well I hope you have a Q&#*t night.” Might as well just say “good luck getting some sleep as all hell breaks loose with Liam’s vital signs.” That’s as bad as saying the S-word when you haven’t seen any tonic-clonic events for a few days. But word choice is only the tip of the proverbial iceberg. We can’t let ourselves descend into chaos now can we? I wasn’t a superstitious person before Liam was born, but you can’t expect us to survive this much overall time in a hospital and NOT develop some tics, habits, and superstitions.

No, no they’re not superstitions, superstitions just sound silly. These? These are rules.

Blue hospital admission bracelets are not to be purposefully removed (cut off with a blade or even ripped off) until it is done in our living room with all three of us present. As many of you know, during long hospital stays bracelets can wear out pretty quickly and after a few showers they get brittle and start falling apart. Even if a band is only being held on by the smallest shred of brittle plastic and I know it will probably break off in the shower and that I should just break it and get a new one from the desk before I leave since I’ll need one to get back in, I just can’t do it. As long as Liam is lying in a hospital bed my hospital bracelet has to wear out and break on its own in the course of normal activity. Last Sunday night I instagrammed a picture of three hospital bands on my coffee table neatly cut off with scissors. Check my feed to see it, I will not be posting it tonight. Bad Mojo.

The flooring of the skybridge connecting to the hospital parking garage is a single sheet of linoleum. About halfway across is an 8 inch area that has bubbled up. It has been that way for the last three years. I can assure you of that because each and every time I have left the hospital I step on it twice with my right foot. Every single time. I have stood in the doorway waiting as families stop there to argue or are just slow walkers just to make sure that I step on the bubble. I try to work on doing it subtly when I’m not alone walking through but it’s pretty hard to hide since I have to do it twice. Conversely, I use the same skybridge every time I enter the hospital too but on the way in I NEVER step on the bubble. I’m not really sure how this all got started. It is just something that happened. These are the rules. The little things that Karin and I hold onto when a hospital becomes our whole world. A hospital is a serious place. These rules are not made for breaking.

Red cafeteria trays should always be avoided. This rule came from last year’s 40 day admission in which Liam had his appendix removed. We spent a lot of time with the surgical residents that stay, so much time in fact that the red tray rule comes from them. They worked so closely with us for so long and they did such a wonderful job with Liam through what was a complicated medical situation that it was the very least we could do to adopt their own hospital ritual as our own. There is a heartbreaking story that accompanies the red tray rule but I feel uncomfortable sharing it. Just know that is a worthy cause and so in what has probably been more than a hundred meals in the cafeteria since, I haven’t used a red tray. Now Brown trays on the other hand. Brown trays are used exclusively when we are dealing with issues of Liam’s motility. Yes brown trays to help relieve constipation.(it’s too bad that Liam has a g-tube – the cafeteria food ON the brown tray is what could actually help with constipation). No one ever said the rules weren’t crass.

But the weirdest of the rules is the only one that Karin doesn’t follow. I don’t shave when Liam is in the hospital. What started as a kind of playoff beard thing when Karin was pregnant evolved when he was born into a beard until he comes h*me from the NICU grizzly adams look. Between pregnancy and NICU stay we’re talking close to 11 months without so much as a trim. It was a hairy time. Ever since then I don’t ever shave when Liam is in the hospital. When Liam eventually did make it h&me from the NICU I was baby-faced once again until 14 days later when Liam began his first PICU stay of 109 days.  That beard was pretty good too. I generally keep a beard all the time now but I trim it down and shave my neck every couple of days. I was getting pretty shaggy before this stay even happened. My neck is getting pretty itchy these days.  Damn these rules. Sometimes I wish they weren’t so strict.

I’m not sure what would happen to Liam or to us were we to stop following these rules but I tell you what,  I’ll be damned if I’m ever going to find out.

What kinds of habits, or “rules” help you find comfort during times of great stress? Maybe we can add a few more to our list, we could use all the comfort you can give.

Good Day / Bad Day

In the span of 12 hours yesterday Liam endured an EKG, an EEG, an unsuccessful attempt at placing a picc-line (a fancy IV in which the catheter extends all the way to just outside the heart), a two hour ultrasound with the rudest medical professional I have ever met, the insertion of a central line into his subclavian vein  (another fancy IV line directly into his chest) by the surgical team and a CT scan of his brain. So I guess your day wasn’t as crappy as you thought was it?

For my part in this mess I took on the role of pacing, sweating, swearing at our medical team, huffing and puffing in pure rage and coming dangerously close to being escorted from the building by security for almost punching the radiologist I mentioned above. That was my job yesterday and I did it to the best of my ability and if a few of the residents remain intimidated by me then so be it.

Karin on the other hand was FREAKING AMAZING! She was calm and collected. She was able to prioritize the specialists and all of their tests like an all-star air traffic controller. While I raged she remedied. While I screamed and swore, she settled and soothed. While I got stressed and worried, she got even more confident and calming. Her grace yesterday is something that I will not soon forget.

And that is how we make this work. On tuesday Karin was the worried one, and even though it wasn’t as crazy a day as yesterday it was a day of worry, what with Liam in the throes of septic shock. That stress and worry which manifests with anger in me, is instead sadness in Karin. Some days I get to be the strong one, and others, not so much. The wonderful part is that they very nearly never overlap.

By 9pm things for Liam had finally calmed down. With the subclavian line we had our access both for putting meds in and drawing blood for labs out. We were made  aware of the large blood clot in his leg (clogging up his original central line) and immediately beginning treatment for it. We had a new seizure med introduced to compensate for the fact that 2 of his 4 meds have no IV equivilant, and we had a full 12 hours of blood pressures remaining within the safe and allowable limits we had set. By the time I left for my turn at home Liam was sleeping comfortably and Karin was setting up the bed in Liam’s room to get some rest herself. We may have turned a corner yesterday. No thanks to me.

I was too angry to even see the corner coming, and I’ll be damned if I was going to turn this thing around and ask for directions.

It’s a good thing Karin was.