Sleep

At my house right now.

20140507-012723.jpg

Karin is asleep in our bed.

Liam is asleep in his bed. The gaseous results of his recent formula change rumbling over the baby monitor to the living room and wafting their way across the whole first floor.

I’m on the couch. Listening to Liam’s breathing (and farting) pattern over the monitor and laughing to tears at old Cheers episodes.

1:30am on a Wednesday. It looks a lot like any other night at 1:30am at my house.

Smells the same too.

He’s lucky he’s so damn cute.

Crib Notes

I get to go to bed earlier than 4:15am now! No longer tossing and turning on the couch grumbling about the pain in my neck it creates while counting the ventilator breaths I can hear on the baby monitor. Karin can lie back down in bed from 4am to 8am instead of sitting up by Liam’s crib while he has his daily awake time from 5am to 6:30am.

It’s a comfortable bed. A nice wide full size bed. Probably the nicest bed that I’ve ever even purchased. The only thing that would make it nicer would be if it were mine.

This one is a big boy’s bed.

*****

Last week on a day that also included Liam’s first ever trip to see a movie in the theater, (Despicable Me 2, and yes the whole family enjoyed the movie and the experience) I worked past the emotions of how on earth Liam could possibly be too old for a crib and got to work turning this

20130720-001343.jpg

into this.

20130723-004026.jpg

I’m betting that the parenting books tell you it’s a bad idea to sleep in the same bed as your 4 year old but we don’t go in for parenting manuals around here. Instead we just do what works for us. What works for him.

The phrase 24 hour a day care is not hyperbole and for the past 4 years Karin and I have split the night in two. Couch time and bed time. Neither of us in either space together and unfortunately that isn’t likely to change anytime soon. But our level of rest will. The light from the ipad or kindle is hardly brighter than the displays on his feeding pump, vent or oximeter. I can read and I can sleep and I can get a little more rest all the while being less than an arm’s length away from the boy. From the circuit. From the suction rig.

20130720-001140.jpg

A big boy bed. Just as exciting as the day that Liam left the confines of his NICU isolette and into an open air crib but I’m not sure which of us has been more excited about it. Liam, who now has the room he needs to stretch out as much as he wants, (and even has the audacity to learn how to roll over by himself, the little scamp.) or me and Karin who will get bits of sleep that we so desperately need while still being close enough to care for the big boy stretching next us.

Pretty sure it’s us, but even if it’s not today, it will be once Liam gets to hear me snore.

Night Shift

I’m generally not the guy to post news, be it good or bad, as it happens. It took me a week to post about taking Liam onto the field at Fenway before his first game there, a truly life changing moment, so the timing of this post alone should explain its importance.

In only minutes Liam’s new night nurse will arrive for her first overnight shift. She has trained here with Liam and his daytime nurse for 30 hours and so, she is comfortable with us. She seems competent and confident, she is gentle and sweet with Liam and even talks to him (which you would think wouldn’t make her special when it comes to nurses but we’ve found that not to be the case). She seems to be happy to work nights and has given no indication that this is just a placeholder job until something better comes along (also a common theme found in overnight nursing). In other words, she was sent from above.

September 4th. The last time I went to bed before 4am. The last time Karin was able to sleep past 4am. The last time we slept in the same room. In only minutes it will come to an end and we can take a deep breathe and get some rest. So it’s going to be pretty funny when neither of us get any sleep at all. It will take a while until we get used to trusting someone new to take care of Liam without either one of us. Even if it is overnight.

Get some sleep out there folks. I know we are going to try.

The science of sleep.

This is the face of an exhausted boy who had not slept in 36 hours.

I wouldn’t even call it a symptom really, more like a subtle change in the rate of Liam’s breathing and the quantity of his secretions. It wasn’t alarming but something worth noting and so when we called the nurse practitioner from our pulmonologists office she suggested we try a course of steroids to see how he responded in case it was the onset of something asthmatic. Liam has never been diagnosed with asthma but he has responded well to steroids in the past and since we are on the cusp of flu and cold season thought the benefits outweighed any risk. We agreed to start the steroids.

We saw a small improvement in the “symptoms” but since they were fairly small to begin it could have been anything. What we also saw was the insomnia that can present in kids on the juice and within 5 days we watched Liam struggle to find any sleep at all for 36 hours, twice! I snapped this picture on a saturday morning. The last time he had slept was thursday.

We called into the pulmonolgist and told them we were stopping with the steroid. The side effect of insomnia was more powerful than its intended effect of boosting respiratory strength. With no sleep come more seizures. A night without sleep means a day without calm. The house fills with anxiety, knowing what is coming.

Despite the fact that we had already given his morning dose of the steroid we were now stopping, Liam must have heard us discussing it because almost instantly after the phone call ended Liam drifted into a nap.

A nap that would last until the middle of the next week. He slept through his haircut and he slept through school.

don’t worry I’m a ninja

He did all this to taunt us I’m sure. It’s been over two months since we have had any nursing help overnight,(the agency is working on it) which of course also means that Karin and I haven’t slept more than 4 hours a night in two months. We haven’t slept in the same room in two months. Haven’t had that euphoric buzz of being well rested in two mo . . ..er, four years, . . . anyway.

What I’m saying is we’re tired, and while you would think that with Liam sleeping too well it would be a good time for us to catch up on some rest. Well, you could think that,

But you’d be wrong. The whole point of the phrase ’round the clock care’ is that it doesn’t matter if he’s asleep or not.

Of course we spent all the hours he was awake with him, awake as well. We spent the nights after the sleeping spree started with him, awake, only this time waiting for him to wake up. Always expecting the three-day spell to snap. Waiting for the other twitchy shoe to drop.

In another of fate’s cruel twists, lack of sleep brings on seizures, but too much sleep can bring them on just as much, sometimes much, much, stronger.  His mind trying to claw its way through the fog of sleepiness but getting lost and detoured along the way. Not too much, not too little, it is extremely important that Liam gets just the right amount of sleep. He’s like freaking Goldilocks in that way.

And so I’m sure that he needed the sleep but we tried whatever we could to keep him awake for any length of time to no avail. Low muscle tone and all, whether it’s on the couch, in his chair, and even in his stander Liam is always in a supported position, a position comfortable enough to sleep. That is until he had to see his girlfriends at school.

His girlfriends who don’t take excuses like I’m tired or I have seizures. Girlfriends who expect Liam to work his ass off for a half hour and refuse to take no for an answer.

He woke up for them*** alright. And you can see how he felt about doing it in that expression on his face.

I hope you are all getting just the right amount of sleep for your needs.

G’night.

**** Just because I want it to be clear. Yes he looks extremely uncomfortable in this picture but I do mean it when I call Liam’s physical therapist and occupational therapist his girlfriends. He has a very special bond with both of them. Not only because they are gentle and kind but BECAUSE they take no excuses and expect him to work hard for them. Which he does.

A night in the Life

I’m not sure that many people who ask about Liam understand how literal I am being when I say ’round-the-clock care’ in terms of Liam’s special needs. It means what it says. Due to the ventilator, but more importantly the seizures, Liam needs someone to be at least somewhat awake and alert every minute of the day.

I get asked about it all the time. “Why does Liam need nurses at home?” they ask.

“Liam doesn’t.” I tell them “It’s his Mom and I who need the help.”

So for anyone curious about how we actually achieve “Round-the-clock Care” in our house here’s the schedule. We’ll call it

The (Lack of) Sleep Schedule.

Night Nurse Nights. (mon & tue)

8:30pm. I get home from work.  Dinner time and then playtime with Liam.

10:00pm — Liam gets a couple of medicines at 10:00 along with the start of his ten-hour overnight feed so we get those set-up and change Liam into his pajamas at the same time. After that we have a little more time alone as a family to relax a little bit.

10:45pm —   We get Liam comfy in bed and make sure his room is stocked with anything the nurse may need overnight.

11:00pm — Night nurse arrives and after giving report Karin and I get a break. We watch TV for a little while and are usually in bed by midnight to try to get a nice long night’s sleep.  It doesn’t happen often though since our own sleep schedules are hardwired into the other schedule. The real schedule. Because for the other 5 nights a week the whole thing looks a little something more like this….

No Nurse Nights (Wednesday through Sunday)

8:30pm — I get home from work.  We eat dinner and then playtime with Liam.

10:00pm — Liam gets a couple of medicines at 10:00pm along with the start of his ten-hour overnight feed so we get those set-up and change Liam into his pajamas at the same time. After that we have a little more time alone as a family to relax a bit.

11:30pm —  Bedtime for Liam and his Mom.  We get Liam all comfy in bed together and then Karin heads upstairs to go to bed alone.  I stay downstairs and sit with Liam for a few hours.  He gets another med at 12:00am, which I give to him and once/if he gets into a really deep sleep I take the baby monitor with me and retire to the couch in the living room.  I watch TV and goof off on the internet while listening to the slow peaceful breaths of Liam and his ventilator down the hall. If he is in a deep enough sleep I might drift off a bit of sleep myself on the couch but it is rarely restful.

4:15am — Karin and I switch places.  Karin wakes around 4am and comes downstairs. I give her report and we check the board to communicate if any Tylenol or motrin was given on my “shift” and I head upstairs to catch as close to 40 winks as I can manage. Karin takes her own “shift” on the couch listening for seizures or vent issues.

8:00am — Liam’s overnight feed ends and another med is given.  Karin takes care of these and with any luck Liam gets back to sleep pretty quickly afterwards.

10:00am — Liam is woken up and the Olson family starts the day.

Rinse and repeat 5 nights a week for about 3 years.

Parenting is the never-ending discovery of newer, stronger and more debilitating levels of exhaustion. Every time I think that I couldn’t be any more tired BAM! a new level of fatigue rears its ugly head and along with it, forgetfulness, distraction and moodiness.  Oh it’s awesome.

But you react, and you get used to it, and you just keep plugging along.

You’ll see by the tag on the left that I’m posting this on a Tuesday night. [Update: I didn’t post until after midnight so it says Wednesday, but I wrote this on a Tuesday, I swear.] That means there’s a nurse here right now.

What the hell am I doing still typing this for all of you then?

I have no idea.  I’m going to bed.

Talk to you soon.

Picture Pages

I haven’t been feeling very “wordy” lately. Used it all up during the interview on Saturday I guess. The film shoot went well even though it was at times overwhelming and ultimately surreal. They were here for a bit over four hours, hopefully they’ll find a minute or two of footage that makes it look like I know what I’m talking about.

Anyway, like I said, me and the words haven’t been getting along and so here’s a few awesome pictures of Liam from the past week or so.

More bike time at school last week.  As for the pink crocs, they are formerly the shoes of the daughter of Liam’s physical therapist who screwed them onto the pedals of the bike so that Liam can put his foot inside them while still wearing his own shoes. Clever, clever physical therapist.

Milestone alert! Last Thursday Liam (and his daytime nurse, who took the photo) left Mom out in the hall and had his first afternoon of classroom time without a parent in the room with him.  It was difficult for Karin to have him go into a room that she couldn’t enter with him. I suppose the only other time that’s ever happened before is every time he’s been wheeled into the operating room. Mom and Son survived the brutal ordeal of separation just fine though. (Liam a little more so than his Mom)

I’m having a ton of fun playing with the camera in my phone and the apps that let me experiment with different filters for film effects and frames. It’s fun.

And finally, won’t be long now and Liam will be moving out of his crib and into a big boy bed. Getting a little crowded in there. (picture by Karin this morning)

With that I take leave of you all. We have a night nurse tonight. For the first time in twelve days I might actually get a full night of sleep!

Talk to you later.

Keep Riding That Vent

Liam is “riding his vent” as I type this.

What I mean is that he is currently breathing at the minimum rate his vent allows — 16 bpm. When he’s awake you’ll never see Liam ride the vent. Any breathes over the 16bpm set by his ventilator are called “breathing over the vent.” These are breaths that are generated by Liam and his lungs. Breaths triggered by an awake and active little boy, and so it can be said that if Liam is “riding that vent” it can only mean one thing. . .

Sleep.

Deep, deep sleep.

Many times he’ll sleep just fine and never come close to riding the vent and that’s just fine too. Any time it’s Liam’s lungs doing the work and not a machine is a good thing but tonight I’m counting breaths.

Tonight I need him to ride that vent.

****

I’m writing this from the big red comfy chair in Liam’s room where I can get a good look at him. The light from the laptop is enough to see him clearly but not enough to wake him. Any other night I’d be down the hall in the living room, baby monitor close by, watching TV and having a snack without having to be so quiet that I don’t wake him up. Any other night I’d be able to trust in Liam’s vent and pulse ox alarms long enough that I may even catch a couple of z’s right along with the boy. But tonight I’m staying awake.

Tonight I need to stay awake.

****

The cord that connects Liam’s pulse oximeter to the probe that attaches to his foot wears out from time to time. It’s happened before. It’s about 15 feet long and gets caught on things and tripped over, not to mentioned coiled over the machine itself over and over again so that it’s bound to fail eventually. Liam is monitored for oxygen saturation and heart rate 24 hours a day so how could it not fail?

Well another one failed this morning.

It shouldn’t have been a big deal. It usually isn’t a big deal. As I’ve said this has happened before.

But that was before our medical equipment company was bought by a larger, meaner, cheaper medical equipment company. The first time this happened over a year ago now it was late on a Saturday night. I’m talking 11pm late. The on-call tech hopped in his truck and brought it right to us. But that was before the big buy.

The last time this happened the dispatcher from the warehouse, knowing that they didn’t have a truck in our part of the state that afternoon and seeing that our address was only a few towns over from his, brought us a new chord on his way home from work. Again — before the big takeover.

And so it was no big deal this morning when Karin called the company and told them what we needed. “We’ll get it out to you today Mrs. Olson.” they politely assured her.

She even received a phone call half hour later from a gentleman who had wanted to make sure that he was “putting the right part on the truck” and confirmed the serial number on the monitor. It’s the “part on the truck” part that really pisses me off.

By 4:15pm Karin was getting concerned. She called the warehouse dispatcher to see when she should expect our cord and was told that it would be coming by UPS. Hopefully by tomorrow.

Tomorrow?

“You never said tomorrow. You said it would be out to us today.”

Shipped out to you today. Yes.”

We’ve been at this a fair amount of time. IF they had said anything about shipping Karin would have picked up on it. We know the code.

. . .

Let it be known here and now that it is unwise to stand between my wife and the needs of her son. I can assure you that the poor rep on the phone would have had a much better afternoon had she missed Karin’s call.

“What do you mean it’s coming UPS? You do realize this is life supporting equipment right?”

“Well, Mrs Olson we do know but it’s more cost-effective to ship things than deliver them.” Uhhhhh wrong answer lady.

“Who’s going to come over tonight and ensure that my son’s oxygen saturation is acceptable? Are you going to sit up all night and make sure my son’s lips don’t turn blue? Check his pulse every few minutes?” Let’s be honest. We all know that at his baseline we have very little worry of Liam turning blue (anymore) but that’s not the point. The point is we know quite a few people whose needs are that severe, what if it were them. The point is that anything can happen and the information in those numbers can be crucial to our response. The point is you are running a MEDICAL EQUIPMENT COMPANY.

All the usual comebacks were used. “I can only see what’s put into the computer. It’s a different department that sends it. We have a whole new system now since we are a new company.” and my favorite “It’s cheaper this way.” mmm-hm. It’s cheaper to put my son’s health at risk, got it asshole.

After stunning the girl on the phone with her questions Karin calmed enough to ask “is there any prioritizing of items by importance? Is there a difference in your system if I say I run out of 2×2 gauze sponges than say a ventilator circuit?”

“No, not really. whatever you say your out of just gets tacked onto your monthly supply order.”

Well I feel safer already.

Look, I understand that each rung up the ladder from the girl answering the phone to the guy packing the part onto the truck is just doing their job. That’s fine. But 8 months ago making sure that the patient had everything that they needed to stay healthy and safe WAS their job. Now it seems their job is to help just enough to help the bottom line. Just enough to keep the account. Just enough that some doesn’t get hurt, get sick, or get dead.

****

Liam is doing very well. At some point soon we’ll be keeping him hooked up to his monitors less and less. He’ll be free of one of the many wires and tubes that keep him safe but tethered, but even then we’ll have the option of hooking him up for a quick spot check. The option of hooking him up for a long spell should the need arise. Like if a seizure lasts a little too long or if he needs to have an emergency trach change when knowing his sats is vital.

But tonight I don’t have that option.

But tonight I have no chord.

Tonight I count breaths.

Tonight I stay awake.

Tonight I make damn sure that Liam keeps on “riding that vent.”

How I learned to stop worrying and love the baby monitor.

As always I am sitting on my living room couch at one in the morning typing away on the laptop. I’m where I always am at this time but the room is strangely quieter and I’m a little stressed about it all. Tonight, for the first time in his life, Liam is (hopefully) going to sleep all alone in his big crib in his own room like a big boy two-year old.

I am excited, I am proud, and I am nervous.

Until now Liam has only slept in his own room with the accompaniment of a nurse or a parent. Most nights without nursing Liam would sleep in his secondary, smaller crib in a darkened living room with his mother and I splitting the nighttime hours. Tonight we will still split the night with one of us sleeping upstairs and one of us in the living room squeezing the baby monitor and craning our necks toward the hallway where his pulse oximeter sits stretched to its sensor cord’s limit. This change is not for our sleep benefit as someone will still be required to be (fairly) awake and close by. Seizures still happen, condensation collects in circuit tubes,trachs and g-tube buttons can pop-out, there is still a need for round the clock care. But it’s unfair to Liam to expect him to understand a bedtime routine if it is constantly changing due to nursing schedules and my need for some sleep. Thankfully Liam has been very consistent in his sleep schedule of late and we hope that this new set-up will only help that trend to continue.

But tonight I feel like I did almost 22months ago during the 13 days and nights that our then 5 month old Liam was home between his stays in the NICU and the PICU. I have gotten up to take a peek into his room every ten minutes for the last hour. The TV is on but it isn’t on loud enough for me to understand the dialogue so I stare at the screen listening to Liam breathe on the baby monitor waiting a few more minutes before checking in on him again. I’m sure if he could talk he’d be all ” Geeze Dad would you cut it out? I’m trying to sleep in here.”

In my head I know that Liam is a strong boy who can handle sleeping without his dad hovering over him. In my head I know that should he need anything medically urgent his alarms would alert me in time. In my head I know that I have nothing to worry about. But my heart, well my heart has spent half of  nearly every night of Liam’s life just a couple of feet away.

Every family has its own set of worries and challenges. No one has it any easier or harder than anyone else, and when done right, all parenting is hard. In all of those differences there can be found a few experiences that maybe every parent can relate to. While many parents don’t understand what life is like having a child with complex medical needs, Karin and I don’t understand what life is like having a child without them, but what parent doesn’t remember worrying about the baby’s first night sleeping alone in another room?  (Actually, I’m sure there are families out there who don’t know what it’s like, all the more reason that Karin and I celebrate experiencing the things that “normal” families can relate to.)

So I sit in the living room and I listen to the baby monitor. The slow but metronome-like rhythm of his vent tells me that he’s asleep and Liam’s heart rate shown on his pulse oximeter shows me that he’s definitely in a deep, deep sleep. I know I shouldn’t worry about him in there, and in time, I’m sure that I’ll get very comfortable letting Liam sleep alone like a big boy. But for tonight…I’m going to go check on my boy.

G’night all — Sleep tight.

Sleep and Stories

After a few hours of begging and pleading I have finally gotten Liam to sleep.  The house is quiet now aside from the gentle white noise of his ventilator.  It’s like our own unique white noise machine.   Instead of the crashing of waves we get the rhythmic inhales and exhales of Liam’s 14 breaths per minute as he rides his ventilator through dreamland.  I am the only one in the house who is awake; including the cats who are probably snuggled at Karin’s feet waiting for her to stir since any movement of hers between now and 4am will , in their minds, most definitely be only to feed them.

I had intended to do some writing tonight but as I look at the clock and see that 2am has already passed me by I’ll just retire to the couch and nap lightly until Karin comes downstairs from the bedroom and we trade places.   I would read until then but I finished the last of my library books just before putting Liam to bed and hesitate to start anything new until tomorrow when I will get a chance to pick up a new stack of titles at the library.  I’ve been reading quite a bit lately and will compile it all into a post of recommendations soon (until then the curious out there can see what I’ve been reading on my GoodReads profile).  I get very excited about going to the library and over the past 4 or 5 months I have made it a point to go to the library every single that I don’t have to work.  A day of no work and a big stack of new books to read – what’s better than that?  Plop the kid in my lap for a while and the Wife with me on the couch and I’m in paradise.  But all that’s tomorrow, after the errands are run and the Christmas shopping has begun.  Right now its off to sleep for me, at least for a little while.

So tired.

When I started the PICU Pressure project I had hoped to end it with a bang right before The Walk.  The month kind of got away from me there.  I’ve got some more pieces to write though so it isn’t over yet.  Donations can still be made to The Walk until december anyway so please continue to click on the link to the right and give to Hasbro Children’s Hospital.

The Walk was wonderful.  It was a very emotional day that really drained us all and not just because of the walking.  I had hoped to do a nice write-up of the walk including pictures but that’s not going to happen right now.  I will but not right now.  I just don’t have the physical or emotional energy to get into it.

Tomorrow morning Liam will be admitted back into Hasbro for a bronchoscopy and we’ll be there the next few days for his vent setting “tune-up”.  It’s a scheduled procedure and non-invasive but because it takes place in the hospital it will wipe us all out.  I’m still tired from getting up early for the TV appearance on Friday and since I also worked all weekend I am truly too exhausted to blog.

So instead of another piece about the hospital or a summary of the walk yesterday, here is a picture of Liam for you from last thursday when he went outside and lay in the grass with his mommy.    I’m going to bed.