Like I do every weekend morning I found Karin and Liam asleep in Liam’s bed last Saturday morning when I woke up. Unfortunately it had only been a short while after they had finally drifted off.
“We didn’t have a very good night.” Karin said when she woke up. Liam had been pretty restless for me the night before too. He spent the night looking like he was just about to sleep but something was keeping him from getting there. I thought he had finally gone out at 4am when Karin and I traded posts. I guess I was wrong.
“I had to spray him.” She said. It wasn’t the way I wanted our weekend to start.
The Spray. The versed (or Midazolam) sprayed into the nose to break the really strong seizures. It’s our antitode to the storms that Liam can’t break on his own. We also have Diastat if the versed doesn’t work. It’s rare to see Liam cry because of or during a seizure. He has however cried every time the nasal versed nozzle is placed up his nose and the first mist given. Whether the long-term side effects of his daily seizure prevention meds, or the short-term emergency meds we use to stop them when they can’t be controlled, it isn’t the seizure that he seems to feel the pain of, it’s the cure.
We’re in a good place with his seizures now. The reason that hearing he had gotten sprayed on Saturday hurt so much was because he hadn’t needed it in weeks. Before that it had been months. There have been times in Liam’s life where we have had to do that three and four times a day. When the seizure minutes in a day outnumbered the seizure-free. The hard part is knowing that those times may (and probably will) return.
Even when you find a regimen that works, weight gain makes renders it fleeting, or the side effects of long-term use set in, or tolerance builds and effectiveness wanes. New meds are tried, new risks are weighed. Seizures change. They evolve. They break through. New meds are tried, new risks are weighed.
It’s easy to fall into the trap of thinking that we’ve got this thing all figured out. That we’re the grizzled old veterans of this special needs game. The wibbly wobbly timey wimey aspect to months and months spent in the hospital making them seem like dog years of parenting, every month feeling like seven. We’re only rookies to the sport though. Liam hasn’t even started kindergarten. Which is why I truly value the friendships we have made both in real life, and online from all over the country, with families who have children in their early teens all the way to early twenties with special needs, to show us the way through the big leagues, to be Crash Davis’s to our Nuke Laloosh.
I’ve mentioned her here before so I expect that every single one of you listened to me and have been reading my friend Elizabeth’s blog here. Reading her blog in all its honesty makes any reader feel like you’re already her close personal friend, and of all the many friends around the world that this blog has given me, Elizabeth is the only one who I have ever spoken to on the phone. I don’t email or comment on her blog nearly enough but she’s always there with a kind word or a witty joke on mine, (along with just the right amount of profanity when the comment needs it). She’s good people.
Elizabeth’s daughter Sophie has recently had a stretch of two weeks without a seizure. It was the first time that has happened in 19 years. After a lifetime of many different (at least 17 if I recall reading) powerful drugs with serious side effects, Elizabeth and Sophie have found something that has helped bring her two seizure free weeks for the first time in 19 years. I know I said it already. It bears repeating.
I don’t know what 19 years of this feels like. I know what 5 years of this feels like. I know what two weeks feels like. I know what ten minutes feels like. The ten minutes between looking at the clock when it starts and deciding to push down on the nozzle for The Spray. I can’t even imagine what 19 years of this feels like. I don’t want to.
But maybe I won’t have to know what 19 years of this feels like. Maybe, thanks to people and families like Elizabeth’s sharing their own stories on blogs, radio and TV interviews, and newspaper articles like this one featuring Sophie, our nineteen years will have greater access to a better way to keep seizures away. A simpler way. A safer way than the harmful drugs I continue to give to Liam every day. It’s not science that is holding back the research, testing, and access necessary to give Liam more relief from his seizures in this lifetime. It’s politics. It’s not because it doesn’t work that we haven’t heard real statistics and started spreading it to every child or adult that it could help, it’s because insurance and pharmaceutical companies haven’t yet figured out how to monetize it.
Luckily Liam, Karin and I happen to live in a state where medical marijuana is legal. Luckily, we have a relationship with Liam’s amazing neurologist in which I won’t feel uncomfortable bringing up our interest in this (seriously, we have assembled a pretty kick-ass team of specialists around Liam but his neurologist is like the all-star, and we’re not at a point yet where we would jump into this without his blessing and help). Luckily we have friends like Elizabeth who show us the uncertain road ahead by taking the time and effort to turn back for us and let us know how they got there.
I fear running out of options. I understand that Liam will always live with seizures. When the devastating side effects get to be too big a risk, or his tolerance grows too strong for all the drugs that used to work. What then?
Well you see, luckily,there’s this plant… Listen, I’m not saying we’re going to run out tomorrow to try to score Liam a big bag of grass and see what happens, what I am saying is that it’s another option and knowing what I know now, Liam won’t have to wait 19 years to try it.
It’s hard work being five years old.
I haven’t posted much about seizures lately because things were going so well, I certainly wasn’t going to be the one to jinx it all. Without a doubt, 2013 has been Liam’s most comfortable year in regards to seizures.
The year started shaky as we got used to intervening with either versed or diastat daily but in May all that changed when Liam had a seizure that lasted close to an hour.
It lasted through the hemming and hawing of a night nurse who no longer works here not waking us up until it was way too late. It lasted through the ambulance ride to the hospital. It lasted through multiple medical interventions by ER and PICU docs. It lasted until Liam, already given multiple IV doses of Adivan was given a loading dose of phenobarbital.
And then, as quickly as it all began, it ended. Defeated by dose after dose of sedation and more than exhausted by the electrical storm in his brain Liam lost consciousness. He would be discharged from the hospital the next morning without any other symptoms present.
Liam wouldn’t wake up for three and a half days. Sadly, we’ve seen this type of thing before (actually on more than one occasion we’ve had to medically induce a coma for weeks at a time.) We weren’t surprised as we knew how long the half life of all the phenobarbital he took was but it was starting to concern us. On day four Liam woke up and though he was groggy for another 12 hours, he was, in essence, none the worse for wear.
I’m sure that both Karin and I were marking the days in our heads but niether of us would say it out loud for at least a month in fear that talking about it would end it all.
A month without any seizures. A month without even the twitches and other signs of underlying seizure activity, and then one month turns into two. Two into three and before you know it an entire summer has gone by without a seizure. It would seem that a near overdose of anti seizure and sedation meds worked as what we like to call Liam’s “reset button”. He was awake more, he was more attentive at his school programs. He was alert and active (and now I’m all out of a adjectives for this alliteration).
We’ve had to medically intervene with some seizures lately. I’m pretty sure it’s been four times in the last 6 weeks. 4 times last year would be a day and a half so I’m certainly not complaining. It’s the start of something bigger though so it’s time to make a change.
The thing is, it’s never going to stop chasing him. It will always catch up. Whether by weight outpacing recommended doses or side effects outpacing the benefits, be it seizures or their “treatments”, nothing lasts.
It’s time to make a change.
What we are seeing now are signs that these are no longer tonic-clinic seizures but Liam is back to what we used to call “infantile spasms” but now due to his age, the neurologists call them “epileptic spasms”. Of course most of his current medical cocktail are ineffective against spasms and so after a phone call with Liam’s neurologist this morning we’ll be re-starting a med that proved itself early on in Liam’s life. We’ll get an appointment to go into the office next week to start weaning off of some of the other meds he’s currently on but for now we want to get ahead of this.
Liam needs the head start because while five or six big tonic seizures a day last year was hard, the thirty or forty spasm attacks a day when he was an infant was even harder.
I hate every single seizure med and treatment that Liam had ever tried, but I hate the seizures more. So when they bob we’ll weave. When they zig, we’ll zag. I’m not happy about changing Liam’s medical regimen but I’m hopeful. Hopeful because this treatment has worked before and he’s been off of it for a few years so hopefully it’s still effective.
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.
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.
**** 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.
The baby monitor broadcasting ventilator breaths behind me, I’m sitting on my couch trying to figure out what to post about. I didn’t intend for a whole week to pass between posts, but then, I never do. Doesn’t stop it from happening. Liam is asleep in his room and I am down the hall in the living room counting the seconds between each breath like a conductor counting beats to ensure that he’s sleeping and not seizing. Liam’s seizures seldom effect his heart rate or oxygen saturations enough to set off the alarms on his oximeter so counting breaths really is the best way to know when you don’t have eyes on the boy.
The seizures have been consistent lately. Consistently strong, and intense, and up until the last few days, consistently needing medicinal intervention to break at least once a day. Two or three a day, in truth is a pretty manageable number. There have been stretches when it was double digits every day so we’ll take 2 or three if we have to, but the boy is getting stronger now. After weaning the vigabitrin at the end of the summer Liam has had a significant increase in muscle tone only making the tension in his arms and legs during seizures that much more painful for him. Wincing in pain between twitches and tensions where before there was none.
I’m certainly not complaining about the muscle tone. It is that muscle tone that helps him in therapy at school, that helps him to roll over almost on his own now, that helps him make it more and more frustratingly difficult to get him in and out of a onezie. The reverse of an illusionist escaping a straightjacket — Liam seems determined to have his shoulder dislocated by having clothing put on.
School is going well. So well in fact that we will be adding another day this week in our effort to get him going all week-long by the end of the year. Adjusting his sleep schedule to be ready for school however is not going well at all. Liam flat-out refuses to conform to our schedule by either staying up until the wee hours of morning or by falling asleep right away only to wake up a few hours later ready to play until when he should be getting ready. We are holding to the routine in the hopes that he will bend to our will but believe me his stubbornness is unmatched (even by me).
I can hear the ventilator as the baby monitor whispers a little more than 2 Mississippi’s between breaths in a steady unbroken rhythm of what I’m guessing is about 18 breaths per minute. Slow enough that I know it’s a deep sleep. Deep enough that I can let my guard down just a bit. So I will. Good night all.
I’ll talk to you soon.
Liam had a long slow burn of a seizure tonight. It started slow with a twitch and a full body spasm for only a few seconds every three or four minutes until it clustered about ten minutes after it started. The nasal versed we’ve been trialing to break larger events worked just fine though, and he drifted into his drug induced haze right at his normal bedtime. If he’s going to have a big one, that is just about the perfect time for it. So aside from his normal twitches that’s two for the day today, this morning’s was much milder.
You may recall that in late July Karin and I elected to admit a healthy Liam into the hospital to transition him onto the ketogenic diet. Hoping that the high fat, no carbohydrate diet and the ketones his body would produce as a result would reduce the quantity and/or severity of his seizures. Within days we were seeing a change. Cranky and miserable while his body fought what instinct told him was starvation, by the end of that first week we saw a few seizure free days and returned home hopeful that this diet really would help Liam reduce the amount of seizures and as such, anti-seizure meds he has always been prescribed.
Just about 14 hours later Karin and I were admitting a very sick Liam into the emergency room for what would end up being a 26 day stay in the intensive care unit to battle septic shock, the ileus (intestinal obstruction) that resulted, a severe increase in seizures, the constant struggles in finding and maintaining IV access including two different central lines being put in (one of them by the surgical team), and the discovery of an enormous blood clot which is the result of the first of those lines. Oh and one other thing but we’ll get to that later.
For the first few weeks of that stay we stayed true to the diet, even when Liam was NPO. instead of the normal D10 or D5 for hydration, Liam’s maintenance fluids were specially made in the pharmacy to give him as little dextrose as possible. His IV meds were specially made because most solutions contain dextrose. The chlorhexidine wipes that hospitals use for sponge baths contain glucose so we went old-fashioned with good old soap and water. Basically, let’s just say that keeping a kid who was sick enough to stay asleep for days and days at a time on this ketogenic diet was getting a lot more complicated.
While investigating some blood in his stool (I know some of these details are a little “too much information” but they really do tell the story, ultimately it was another byproduct of the shock and resolved itself eventually) a bright circle appeared on one of his x-rays. A circle that seemed so symmetrical as to appear unnatural it was at first disregarded medically, The assumption being that it was one of the leads to Liam’s heart monitor or a piece to the in-line suction tube of his circuit. A few days and a few more films later, the diagnosis surprised us all. Gall stones. A ton of them. Little crystals that when his gall bladder was tasked with breaking up such a high fat diet rose up in revolt and clustered together into a mass to protest.
Freaking gall stones at three and a half.
Now I don’t think I need to explain how severe a gall bladder surgery on any three-year old would be nevermind a child as medically complex as Liam. Lucky for us, the medical consensus was not to do anything. remove the strain on the gall bladder and they should spread out again and not cause Liam any pain I was told. So I asked another doctor, and then another, not believing that finding a gall bladder full of tiny stones wasn’t a more major problem that would require at least some kind of intervention. Come to find out, no one was even all that surprised.
All told, by my very rough estimate, I think Liam has spent about 6 to 8 months of his life on TPN and Lipids, nutrition through an IV instead of his gut. Of course nothing is without its side effects and apparently gall stones is one of them so to find out that they were there was hardly a shock. They were there the whole time. The only reason that we know they are there now is because Karin and I took our healthy little Liam into the hospital to try the ketogenic diet.
Adjusting for weight every half-year or so, day in and day out Liam eats the same amount of calories. Pumping through his g-tube exact amounts of protein, fats, and carbs in his formula Liam’s diet for his entire life had been designed to make it as easy as possible for his body to digest. He has grown so big and strong and since we hadn’t had a hospital admission in just about a year Karin and I were convinced that now was the time to try the diet.
Liam is no longer on the ketogenic diet. Until he is strong enough that we consider removing the gall stones (and with them probably the whole gall bladder itself) he will not be able to resume the ketogenic diet. Sepsis and blood clots, staying on seizure meds and giving injections of blood thinners, I feel guilty about trying this diet every single day.
I think I always will.
But even living with the constant guilt, I know that we made the right choice in trying.
We knew what the risks were going in. We were the ones who approached our neurologist to try. Seizures suck enough, the long and short-term side effects of pretty much all meds to control seizures suck just about as bad. To think that there was an option to control seizures and reduce the amount of meds Liam required simply by changing his formula? A case could be made that we would have been negligent in not trying it. Right?
That doesn’t make it hurt any less when I think about everything Liam went through for us to find out. I know he understands. I know he’s a fighter and wants to beat these seizures as much as any of us do. He tells me with his eyes. That doesn’t make me sleep any easier remembering what he had to go through in that intensive care unit. There was no reason that anyone could have predicted the events that transpired from this change. That doesn’t make the thoughts go away that I somehow should have seen it all coming.
The universe works in amazing ways.
Liam’s NICU stay was 153 days long. In a teaching hospital that’s 5 months of residents rotating in and out every 30 days. Among them when Liam was born was Dr. S. just beginning her residency and in her first rotation. About 10 months later she started her rotation into the PICU. At the time Liam was about halfway through a 109 day stay there. The following year Liam was admitted for a virus that attacked his GI and who should arrive to consult when the GI team was called but Dr. S now onto that rotation. During his last few admissions though, Dr. S would just come by to say hi to her buddy Liam whenever she saw his name on the patient list.
Liam has a hematologist now. Cross another specialist off the list. He is now a patient of the hematology clinic at the Tomorrow Fund of Hasbro children’s Hospital. Last week we went in to asses the level of his blood thinner and go over any other concerns of the three to six month course. We weren’t there to meet with the attending of course but the fellow. The fellow, a year-long assignment instead of a month. The end of being in medical school and the beginning of being a doctor. (technically they are “doctors” the whole time but you catch my meaning.)
So it should not surprise anyone at this point when in walks the hematology fellow — Dr. S.
For us and for her it was coming around full circle. Liam had been a part of her entire med school career. She even remarked about it to the attending who popped in towards the end of the appointment.
“Yeah, you’ve been a part of Liam’s team his whole life.” I said.
The attending looked at Dr. S and then back down at Liam and said ” Oh she’s not alone. I’ve looked over his chart. I bet there are a whole lot of doctors out there who this boy has taught something to.”
She’s right. There are. And Liam is an excellent teacher.
The connections that we make with other people mean something. Something important. That is no less true for a person like Liam who can’t make a connection verbally. He can’t sign and for the most part he can hardly smile (with his mouth. Liam smiles with his eyes and anyone who has seen it can tell you that it has the power to change the way you look at the world.) but the connections and bonds that Liam can make above all those obstacles mean something, to him and to us.
During that last hospital stay Karin and I were able to meet a parent whose child had just been trached. We were able to give our experience in how we are able to manage a trach and vent at home. That means something. We were able to meet a doctor we hadn’t yet met and although Liam was not her patient she would visit him and us, and we would talk for long periods about what this life of ours is like. A strong bond of friendship not doctor/patient was quickly formed. That means something.
Any future patients that enter Hasbro Children’s Hospital to try to start the ketogenic diet will be getting an ultrasound of their gall bladders beforehand. Liam did that, and that alone is worth the risk. Maybe the next kid wouldn’t have been as strong as Liam is. He has helped to make sure that other kids don’t need to encounter this problem in the same way. That means something too.
Karin and I brought our healthy boy into the hospital for a week to try the ketogenic diet hoping it would reduce his seizures. A 33 day hospital stay, crazy complications, twice daily injections at home, and we are right back where we started. Only Liam won’t allow me to think that it was all for nothing. It’s his strength that gives me the courage to try whatever we can do to improve his medical needs. Along the way, connections are made that show me how much Liam means to nearly everyone he meets. It’s those connections that I hold on to when I wonder if I made the right move. If it was worth the risk.
It hurts like hell, but I still think that is was.
The text messages came to me at work just as the lunch rush was winding down.
He is vomiting badly — 1:49pm
Need you — 1:53pm
Seven minutes and a run through the underground tunnel connecting the hospital I work in and the hospital Liam is currently admitted later I entered Liam’s room to find Karin and a respiratory therapist put the finishing touches on an emergency trach change with Liam stripped to his diaper and looking a little grayer than his normal pasty pale. (The nurse, who was in the room when it happened, apparently bailed out and left soon after the vomit, showing her inexperience with trachs and vents. This is why Liam should have been admitted to the PICU. For those first important minutes when the risk of aspiration was greatest Karin’s were the only capable set of hands in the room. But anyway.)
Vomit. I suppose that most parents become accustomed to vomit by the time their kids are three. Not us. Liam just isn’t a puker. Today marked the third time the Liam has ever vomited.
The first two were the result of major and I mean major intestinal blockage. Both occurred during long, long hospital stays. So, when a text message says vomit I go a running.
Thankfully this one was not as serious. No, today’s Technicolor yawn was brought to us by a poorly timed bolus of water that should have been pumped in slowly with his feeding pump but instead was pushed in with a large syringe in a matter of minutes (I don’t mean to harp on her but this was also the result of the same nurse not knowing enough about Liam’s medical needs.) and a lunchtime feed being pushed too quickly afterward. The acidosis of the transition to the ketogenic diet certainly didn’t help matters and the diarrhea he experienced from a med given to help an elevated potassium reading the night before left us with a very dehydrated, grumpy, and did I mention gray little boy.
I’ll admit to being nervous and anxious and then an overwhelming sense of guilt that what Liam was going through was the result of our decision to begin this treatment. If it ain’t broke don’t fix it we always say but Karin and I took a healthy, if somewhat twitchy, little boy into a den of germs and put him through this pain and discomfort. Had we really made the right decision?
It was only a few minutes later when Dr. G arrived. To try to explain the respect, admiration and trust the Karin and I have for Liam’s neurologist who first saw Liam when he was only three weeks old would make this post unbearably long so just know that he is a very calming presence at a time when we needed one. He was followed by three residents who stayed silent and observed while Dr. G, Karin and I discussed symptoms, tests and then the options for nearly every scenario of test result for a little while. Sensing the end of the consult as Dr. G’s beeper went off I asked a question I normally never do since I prefer numbers and hard data over impressions or feelings.
“so, uh…you aren’t . . .concerned about this?” I was pretty sure I knew the answer to the question before I even asked it since Karin and I have done our homework on the diet and this transition and I always knew something like this could happen. At that moment, with Liam lethargic and miserable lying nearly naked in front of me, I needed to hear him say it.
“No this is normal. Episodes such as this are what we expect to see as we make the transition into ketosis. This is the reason we start this diet with a hospital admission.” The words came so easily to him that they instantly neutralized the tension in the air.
The neurology nutritionist working with us entered the room to hear what our new plan was and with the release of all of my nervous, worried energy I called out to her “Hey, this is all your fault! I can’t believe you told us how smoothly this was going just this morning in front of Liam!” I pointed over to Dr. G. “Ask him. Liam hears something like that he’s going to throw you another wrinkle. He doesn’t ever let us off that easy!” The whole room laughed out loud. More than one of us got up to get closer to anything wooden to give it a knock because any mention of things going well, or worse the unspoken H-word*, is only tempting fate. Karin resumed hugging Liam and the team disbanded to put our newly formed plan to action.
I waited a little while to witness the blood draw and get a few of the results we were looking for before heading back through the tunnel to work confident in the knowledge that all of the people who needed to hear the plan did so (including the capable nurse for the next shift who has been assigned to Liam 3 of the 5 evenings of this admission). Hospitals on their best days are a scary and stressful game of “telephone” where information and orders can change ever so slightly between departments and shifts. I love it when we can have everyone together at once.
After my shift had ended 5 hours later I returned to Liam’s room to find a pink, awake little boy snuggling comfortably in the large hospital bed with his mom. A small iv drip that had already been stopped and the tolerance of two feeds in my absence and you’d find it hard to believe it was the same boy who earlier had struggled so just to open his eyes. Dr. G who is the on call neurologist this weekend just happened to stop by only a little while later. We discussed the plan moving forward and reveled in the reveal of acceptable test result numbers in all of the categories that we were looking for. This time we didn’t have to ask for his impression, Dr. G decided to give it anyway.
“I’m really encouraged with these results. He seems to be transitioning very well. Like I said we do expect little events like this one. How have the seizures been?” He asked.
“Well It’s been about 36 hours now since we’ve seen anything!**.” We were so excited with the news Karin and I responded in unison. It has been a long time since we could say that.
“That’s wonderful.” Dr. G said with a great big smile “Now someone better knock on some wood!”
And all three of us did. Now you should too.
* the unspoken H word for the uninitiated begins with an h and rhymes with gnome and shall not be uttered until all three of us are in the van.
** We are in no way expecting this treatment to eliminate all seizures and I am positive that they will occur but a stretch that long this early is an encouraging sign that as he continues on the diet we may see a reduction in their quantity and severity. We may even be able to ween from some of the dangerous seizure medicines he is currently taking. We’ll see. Right now I am hopefully optimistic.
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.