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.
“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.
A urinary tract infection. Well ain’t that just a kick in the pants.
I’m currently in the big red comfy recliner next to Liam’s crib tapping this out on my phone. Posting a photo I snapped on the couch a little while ago. If I thought my brain was scrambled a few days ago the first time we came home I’m completely fried now.
My first ride in the ambulance. Totally not as fun as it seems. I kid -it sucks a whole new level of suck and made me even more in awe of my wife who has had the pleasure many more times than I have.
Once we were able to control Liam’s fever it was only a matter of waiting on cultures to grow out so we could get our antibiotics and get the hell out of there. Liam was stable enough that when the Picu got busy late last night they shipped us up to the “normal” hospital floor. That’s a story a different post all in itself.
The few times we’ve been put into gen-pop much of the vent and trach care has fallen to karin and I. If we have to do all the suctioning, trach sponge and daiper changing (simply because one of us is always sitting there, not because they don’t check every couple of hours) We might as well be at home. “The Floors” (as its called, as opposed to “The Unit”) is a frustrating place for us. Our house is like a hospital floor. Complete with medical supplies and nursing staff. Which is why 98% of Liam’s hospital time has been spent in intensive care units.
Anyway. Sensitivities came back this morning and by the time the ink on the lab slip was dry Liam was dressed and in his stroller waiting to bust out of the joint.
We made it home and Liam has been sleeping it off since we got here. Right now, things arond here are very good.
A favor, if you could, please help Liam through the next few days by sending thoughts of waterfalls and rainstorms, running faucets and ocean waves. It’s important that Liam urinates well these next few days. If he doesn’t void enough it’s back we go. He’s already gone pretty good today but the next few days are important.
Ok. Enough rambling. I’ve got all sorts of hospital stay related posts and ideas but I’ll need a few days to wrap my head around things. Thank you all so much for the emails, comments, and positive thoughts. It never goes unappreciated.
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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.
Ok. Look. I am far too tired to proofread this post. I am sure I’ve got some sentence fragments and run-ons down there in that rambly mess but Hell, I’m too tired to even spellcheck the damn thing. I just sat at the keyboard and banged it out when really I should be sleeping. But you have all sent so much love and support that you all deserve to know that Liam is doing ok. Still not great but ok nonetheless. Thank you for your thoughts and prayers and I hope to get this kid home soon so I can blog a bit more regularly. Thanks also for not holding my bad grammar against me just this once.
The downside to a sudden burst of creative energy in the beginning of a hospital stay is that when you suddenly go quiet everyone assumes that things aren’t going well. Unfortunately for us this week, that assumption would be correct.
A couple of weeks after Liam’s surgery his gut still wasn’t really waking up and doing its thing. He seemed to be healing from the surgery fine and a delay in digestion is nothing new for Liam so we didn’t start worrying until the fevers started. From last sunday to Tuesday afternoon Liam was wracked by fever spikes up to 105 degrees. With fevers come the seizures of course and so along with treatment for septic shock neurology pushed to have an eeg which lasted almost 30 hours.
I fought them off for a few days arguing that the need for cold compresses two keep Liam from literally burning up superceded the need to know if he was seizing. Of course he was seizing. He has been taken off of his two most effective seizure meds (no IV substitute) and he is experiencing every trigger that we know of — pain, fever, and exhaustion. I was actually surprised we weren’t seeing more seizure activity and I told them so.
The septic shock made for some pretty nasty days. Circulation and perfusion problems from the fevers, blood pressure meds and the fine balance of two ‘pressors’. After the usual battery of tests it has been confirmed (as well as it can be) that Liam’s bloodstream had been infected by the perferation in his appendix. His bloodstream had in turn infected his central line which in turn would re-infect his bloodstream a cycle that obviously can only be stopped by the removal of his central line.
Access to Liam’s bloodstream when he cannot recieve oral feeds is essential. Liam is a terribly hard stick and his little arteries and veins have been pocked and prodded so much that throwing in another line somewhere is not as easy as a doctor’s order. Luckily for us Hasbro Children’s Hospital hires the best around because the young guy who came to put in Liam’s PIC line arrived with such confidence and compassion that he quickly put our minds at ease. Karin and I signed consent and went for a walk. I’ve stayed to watch this procedure before and knew that I couldn’t see that much blood again. (especially if they had to try more than once.)
While we sat downstairs making buttons Karin got a feeling.
“This is it, honey, The line is the problem.” (We still had no proof at that point)”Andrew is gonna get that PIC in and he’s going to get better.”
“I hope so.” I said.the fever spikes and circulation problems had us both beyond frazzled.
“No I’m saying that in my Mom gut I can tell that things are going to turn around today.”
That’s it. That’s all I needed to hear. ALWAYS TRUST THE MOM GUT.
After about 45 minutes we decided that if they didn’t have a line in by then we better be in the loop as to why so we headed upstairs calmly and confident that things were going to be ok.
We approached Liam’s room and I noticed that the door was open which was a good sign since its a sterile procedure. An hour after he walked in the door Andrew the PIC team Nurse Practitioner looked up at me from behind his sterile mask and yelled “We got it in Dad! We’re just waiting on an x-ray to confirm its placement.”
Music has never sounded so beautiful.
That’s when I cried.
It was all going to be ok. Karin’s gut feeling about the source of the sickness and the fact that we had clean access to Liam’s bloodstream to attack the infection with antibiotics washed over me. Liam was going to be ok.
He hasn’t had a fever since tuesday afternoon. drugs are doing their jobs and by thursday morning Liam was lucid enough to give us some kisses and smiles while we gave him his bath and combed the eeg goop from his hair.
His gut is now the major stumbling block again. The septic shock shut things down pretty good down there and Liam is having a heck of a time getting going again so we are still not feeding him anything. We’re all confident thanks to ultrasounds and CATscans that there’s no mechanical blockage but just an ileus that needs a jumpstart. If we don’t see poop soon though Liam will head to imaging again but for a barium study this time. Until then we wait and hope the distention in Liam’s belly recedes.
But we’ve been here 23 days now. And waiting isn’t so easy anymore. And just the fact that we’re here is enough to make us all frustrated, exhausted and pissed off grumpy.
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.
It's probably just an ileus. That's what we're hoping anyway. Go ahead and google it if you want but don't say I didn't warn you about the photos you might see. (Thanks wikipedia)
Really rough night last night. Fever, elevated heart rate, seizures the whole kit and kaboodle but he's doing better now. Feeds have been stopped again as we rule out some of the more serious possible causes.
Post-op abcess or other blockage has been ruled out by x-rays, ultrasounds, and ct scans.
And so we wait.
Wait for him to pass the barium. Wait for his G.I. tract to wake up. Wait for the antibiotics to bring his white blood cell count back down.
We wait. We're pretty good at it. Plus Liam makes it pretty easy. He's lucky he is so damn cute.