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.