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.

8 responses to “When Care is Always Intensive

  1. I am sure you do not know how unbelievably helpful your blog is to those of us have cared for kids with complex medical issues. Each time you post, I read it out loud to my husband as we sit bedside by our son in the ICU unit we have fashioned out of a bedroom in our home. You get it. Someone else gets it. This is our life…so foreign to nearly everyone else in the world…but we are the 1% along with you…don’t send us to the “unit” upstairs…the kiss of death..because it means we have to up for anything 24/7..because we are the only ones we can count on to be fully trained. When the residents come by and I have to tell them why there are two trach sizes at bedside..that is just not a safe place for my daughter unless I or my husband plan on never peeing for as long as she is there.
    Thank you for sharing your incredible love for Liam…you’ve given him a voice when others cant hear all that he communicates to the world each day.
    I love your blog!!!

  2. This may be one of the greatest posts you have ever written. Up there with the Terry Francona post, but for entirely different reasons, showing guys like me, with a child who has entirely different Special Needs, what an entirely different side of an entirely different coin looks like. We all have such a uniquely different set of problems, challenges, variables. It never ceases to amaze and stagger me.

    And I don’t think you are wrong in being demonstrative in your feelings, particularly once you presented all your evidence. I particularly loved the Diastat you administered on your own. I’ve done the same thing…given my own medication, to myself during my hospital stay a few months back, or to Bennett during his, when the time comes for meds. If I have a med and it says ‘Take the med at 6:00PM’, and it is now 7:00PM and there is no med?….guess what? I take my own. Nurses get PISSED. And my answer is always the same. I show the bottle or the instruction they have that says the time of dosage and then I show them the clock. Never sits well, even though I am SUPER POLITE about it.

    They usually then ask me where I keep the medication after that, and my response is never met with the laughter I hope for. I say ‘Do you have a latex glove and some lube?’

  3. Eric, a marvelous post, in keeping with your and Karin’s marvelous job of advocating for your son! Your writing is so clear and so expressive. Much love to you and your family, Squirrely Shirley

  4. Eric, when are you going to write a book? Still waiting….come one….I’ll even write a chapter regarding home care nurses and the fact that they are a blessing and a curse…lol. Give that stinkin handsome boy a high five from me. Thanks for sharing. I wish I could swoop in and help out.
    Laurie Craig

  5. A transfer to intermediate care is only appropriate when they are able to provide it. Assigning a nurse to a trach patient who doesn’t know how to change a trach is negligent at best and life-threatening at worst. Even being in a situation where a child with a history of needing emergency medication can’t get it without a major protocol breach is just insane.

    We have been blessed that Lily’s home hospital for her first two years has a step-down ICU. Great place for children who are just waiting for that last little health boost only their body can provide. However with shared rooms, not a great place for a little girl with a history of getting incredibly sick in the blink of an eye and spending months in the PICU. The day her team told me she wouldn’t survive after an intense battle lasting over two months took a toll on them too… when Lily had her miraculous recovery, I was promised she’d discharge straight from PICU. When we came back six months later needing IV antibiotics, PICU grab ed her case so fast no one had time to think that she wasn’t that critical. The changes the PICU staff made to her vent settings that admission made such a great change that six months later, Lily is thriving in a way we never dreamed possible.

  6. Pingback: The short stay that we wanted. | Pressure Support

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