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.
I asked for the day off months ago. I decided last year when this crazy calendar coincidence was brought to my attention that I wouldn’t be going to work on that date anytime soon. July 26th. A Friday this year. Inventory day. I don’t take Friday’s off, especially when I have to work on the Saturday and Sunday anyway. It wasn’t as if I was even giving myself a three-day weekend. I don’t work on July 26th anymore. I stay home and lock it down.
Lock it down day.
July 26th 2011. An Ambulance ride. A prep for Emergency Surgery. A perforated Appendix. An intestinal mal-rotation. It was the first day of 42 a day hospital stay that would include A blood stream infection, sceptic shock, post surgical ileus, multiple complications of his seizure med routine due to access issues resulting in huge seizures.
July 26th 2012. To tell you the truth I don’t remember how we got him to the hospital this time. I do remember that it was only 14 hours after we had been discharged from Liam’s week-long elective hospital stay to start the ketogenic diet. A back and forth that included a 104 degree fever. Gall stones (a side effect of Long time TPN nutrition and inflamed by the high fat ketogenic diet), a line infection. It was the first non-elective day of a month-long hospital stay that would include another blood stream infection. another case of sceptic shock, a post traumatic ileus, multiple complications of Liam’s seizure med routine due to access issues resulting in huge seizures.
July 26th 2013. Nothing. No ambulance rides. No car rides. I don’t think I even put on shoes. Liam slept in and then we watched movies on the couch. We didn’t do laundry, we didn’t do housework, we didn’t do anything other than watch tv, and read, and relax, and that was just fine with us, it was completely by design. Cocooned from the world in our little bubble we hunkered down and beat back the calendar. July 26th would be ours again! Our own family holiday.
Lock it Down Day.
Feel free to mark your own calendars next year and join in the fun. At its heart it is a pretty easy holiday to observe. All you have to do is NOT take your child to the hospital to begin a long term intensive care stay.
It’s already become my favorite holiday.
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.
“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.
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.
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.
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.
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.
Time enough to make our first batch of ketogenic formula. Time enough to check his glucose and ketone levels on our own, twice. Time enough for Liam’s cats, Linus and Calvin, to forgive us for leaving them essentially home alone for a week.
Time enough for the diarrhea to set in. Time enough for the fever to spike. Time enough for the bacteria picked up in the hospital to infect his bloodstream and start giving him sepsis.
It was a nice break while it lasted, but here we are back again.
Oh and that thing I mentioned last week about the fear of bringing a healthy kid into the hospital? Yeah, that. No guilt here about that, no-siree.
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I started out writing a big long post about setbacks and how frustrated we were at the behavior of some of our doctors today but it was mostly borne of frustration and anger and it just plain wasn’t working. There’s a larger point in it somewhere but I just don’t have the mojo to grind it out tonight. I’ll work on it for a later post sometime.
So instead you’ll have to settle for an awesome photo (taken by Karin and messed around with by me), a wave hello and thank you all for reading. It’s a whole lot more rewarding to blog knowing that so many of you keep coming back for more.
PRO TIP: Nurses love it when you record the IV Pump alarms on your cell phone and play them at random times as they try to set and re-set the array of pumps by the bedside.
No seriously, if you find the right group of nurses, and they are out there, this bit kills. They work through some serious shit most days and are generally appreciative of a good laugh. You gotta learn to pick your spots though. Be sure you can read the signs that there aren’t any traumas or that they’re short-staffed before you go playing pranks. Safety first here people.
That’s all I’ve got. Bit of a setback here today and I hope that it passes quickly but Liam is hanging in there. At least we’ll get to ride out the hurricane in one of the safest places around.
There are more than 10,000 of them, and they are everywhere.
It’s an art installation of 10,000 six inch square clay tiles each decorated by a child from any one of 154 different schools across Rhode Island. A two year project in the mid-nineties these thousands of tiles are permanently displayed throughout Hasbro Children’s Hospital. Hallways, waiting areas and nursing stations are all decorated with panels made up of hundreds of clay tiles decorated by children whose only instruction was to do their best.
It’s hardly surprising that most of these tiles say Get Well Soon on them somewhere. Crudly drawn animals or sunny scenes to help sick kids remember what’s going on outside are also very popular. Some tiles are etched into and some are built up 3D style with extra clay but truth be told they really all just blur together since they’re all so similar.
But then there’s this one. This one stands out.
It’s in the basement but on the way to pedi imaging so we see it fairly often and it makes me smile every time.
It says it better than ever could really.