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.


The short stay that we wanted.


We’ve never taken Liam home from the hospital while he was still “sick”. 40 day stays seldom end with discharge if there is still the hint of infection, so we were slightly surprised when the word to break free came on Thursday afternoon. Not that we complained or did anything to stop it mind you, but slightly surprised nonetheless. The attending doc who discharged us was right when she commented that once the seizure that brought us into the ER had been stabilized the remaining symptoms were not enough to keep us in the PICU. Since heading upstairs to the non-ICU floors is not really an option for Liam it was only logical to send us home. I believe her direct quote was actually “there’s nothing here that you guys couldn’t handle.” She’s gotten to know us pretty well over the years.

Still, I’d be lying if I didn’t say that these last 24 hours hadn’t been tinted with more than the usual amounts of stress and worry. Barely 30 hours after getting home Karin and I still find ourselves waiting for the other shoe to drop, for one of these mild symptoms to send us bouncing back into the PICU just like we have so many times after a hospital stay.


I blog more when Liam is in the hospital. It’s a great way to let family and friends know what’s going on but it also gives me something to talk about. Something in the present because lately I’ve been focusing more on our past.

A few months ago I told you about a presentation I was writing about our story. I’m happy to report that it went well. Very well in fact and I have been asked to do another. Tuesday I will be the keynote speaker for the Women & Infants Hospital Schwartz Center Rounds. (You can read more about Schwartz Center Rounds here). After speaking for 15-20 minutes (no small feat in itself, that first presentation I went on and on for almost 45!) Karin and Liam and I, with the aide of a facilitator, will answer questions as part of a panel discussion for an audience of doctors and nurses, who will receive continuing education credits, along with other caregivers and hospital staff.

It’s kind of a big deal.

It’s why I have been focusing so much on our past. On Liam’s time in the NiCU. On the impact that nurses and case managers, and therapists have had on our family and its development.

It’s why along with meditations on our past there have arisen very new and exciting thoughts about our future. About my future. It may have taken me 35 years but I think I may have finally figured out what I want to be when I grow up and that it has something to do with writing and speaking about patient advocacy.

And it’s why I shouldn’t be blogging any of this right now. It’s all time that I should be working on my speech.

Thank you all for the thoughts, prayers, and well wishes this week when you heard that Liam had been hospitalized. Getting all of those tweets and comments and emails is another reason why I blog more when Liam is in the hospital. It’s nice to know there are so many people out there who care about us. It means more than you all know.


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.