meds

Staying Ahead

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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.

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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?!

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.

We’ll see.

Sure Shot

The first three or four times I tried it, it wasn’t so bad. Environment can be everything. In a hospital room, on a hospital bed, IV’s and catheters, nurses and doctors, the med cart, nothing there is designed for comfort.  Learning how to do it was nnecessary for Liam’s discharge so those first four times of doing it myself just didn’t seem as difficult. Not until we got him home. Not until I tried it on our couch, in our living room, somewhere that Liam should feel safe from things like this.

No, it was that 5th time I tried doing it, in the comfort of our home, in front of our TV, stretched out on our own brown couch that brought tears to my eyes. That made me sick to my stomach. That made me hate, actually hate a medicine that I knew Liam needed in order to stay healthy. It’s been almost three weeks of doing this now and it hasn’t gotten any easier. Twice a day for the next 2 to 5 months and I’m sure I’ll never get used to this.

I will always have a hard time giving my son his shot.

It’s only a 27 gauge needle, just about as thin as they make them and barely as long as your thumbnail, but that doesn’t make it any easier. I hate the whole process. Drawing up .2ml dose, finding a bit of fat that hasn’t yet been pierced or bruised, wiping the area with alcohol. The build-up to the main event. To try to be gentle and gingerly about it will only backfire I have learned. You have to just stick that needle in there. A 45 degree angle to stay above the muscle but under the skin, we want fatty tissue for this. Thighs, a bit of the belly, those big beefy arms on my boy, a pinch of the flesh before the prick and a release just after the plunge, his eyes go wide for a second while his upper lip curls in a jolt of quick pain.

Pulling back it’s over as fast as it started and it obviously pains me more than it does him because almost every single time Liam will be back asleep only seconds after it’s over while I obsess over whether this one will bruise. This isn’t a knock-out drug at all, the return to sleep has nothing to do with narcotics. Sadly Liam is too accustomed to being poked and prodded. I’m just not at all accustomed to doing the prodding.

The blood clot begins below the knee and travels high enough into his abdomen and under his intestines to be hidden from the view of the ultrasound. It is a big one, the result of a major disruption to his clotting factor when Liam was in septic shock. His own blood basically poisoning him. The central line it grew around never even had a chance as it was only  in a couple of days before the clot took over and the line stopped giving a blood return for labs. The lovenox in these shots is what will help to break that clot up, hopefully preventing a pulmonary embolism in the process.

He needs this medicine and I know that. Hours before or after I have to give this medicine when the intensity of having to hurt my child in order to help him fades I feel a sense of pride that I am able to give him what he needs to get better. That pride gets forgotten when I take the syringes out though. That’s when the nerves, and frustration set in.

Like I said, it’s been three weeks of doing this and I haven’t gotten used to it yet.

I hope I never do.

 

Can you fall asleep with the hiccups?

Liam has finally fallen asleep for the night. It’s 1:44am. He has decided that 2am suits him as a bedtime and we are powerless to stop it. Try as we may to keep him up through the day to tire him out, he simply refuses to settle into bed early. Tonight I hope he sleeps well. He should.

He had another seizure tonight. This one was a doozy. He settled quickly after his diastat but the dose doesn’t guarantee sleep the way it used too. His post seizure hiccups kept him up for a while. But he’s asleep now. Good thing too as we are due in the pediatricians office for a visit and another round of immunizations bright and early at 8:30am. I’ve got the portable ventilator all set up and ready for a quick exit in the morning. We’re getting pretty good at the travel thing. Me? I’m going to need a nap tomorrow for sure. Luckily I have the day off from work, since today was originally scheduled for a trip to the eye doctor in Boston for a fairly complex procedure. With the night Liam had I’m glad we’ll only have to drive a few minutes away.

Don’t get me wrong the kid is doing fine. His numbers and lung sounds are great but the seizures take a lot out of him and he’ll probably be a bit cranky in the morning. Liam, like his daddy, has never been a morning person. I better get myself to bed soon too.

We had a good weekend. Liam got to spend a lot of time with his Meme and Grampa (my parents) while Karin and I got some work done around the house. The second floor is shaping up nicely and I only wish I had this weekend off as well to really finish it up. My father and I also spent most of Sunday working on building a shelving system so that I can organize the rest of the junk we have accumulated over the years. Its surprising how many christmas decorations I already own given that this is the first year we’ve really decorated for christmas. We had some major stress that involved one of Liam’s meds and the morons who run its only distribution pharmacy and he had a few strong seizures as we work on adjusting his dose of that med. Par for the course in Liam’s world. He handles it all better than I do. We finished it all off by cheating on our diets and ordering chinese food and watching the end of the football game. (How does a team with a quarterback who is NOT ALLOWED TO THROW THE FOOTBALL end up in the AFC Championship game???) Although I had some plans with a friend that I wasn’t able to make, it was still a very good weekend.

The slow rhythm of Liam’s vent is starting to put me to sleep now so I will end here. Hope everyone had a nice Martin Luther King Day, and I hope that you give to the Red Cross as much as you can spare. The people of Haiti need it more than you do.

Lucky

Bit of a tough couple of days to be honest. The past two days have been the most stressful I’ve had in quite a while. Let’s break it down bullet style! These are listed in order of stress level. Least worrisome to sick to my stomach.

  • Work sucks and is stressing me out like crazy but that one goes without saying.
  • Liam’s upcoming first birthday open house is quickly coming and there is so much left to do to get ready. Christmas has taken a backseat to the 26th’s festivities and we have not pulled out the christmas decorations yet. Spending last christmas in the hospital has us a little rusty and we are far short of christmas cheer.
  • Insurance snafu brought on by a clerical error at my employer’s payroll department was still unresolved until last night. Spent all week hoping that it would be fixed before we ran completely out of a couple of Liam’s meds. One of which is close to $900 for 2 doses which we would have had to pay out of pocket and hope that it got reimbursed when the error was fixed. I made phone calls all day everyday trying to fix an error that was made in an office three states away from where I work and trying to get 6 different companies and entities to co-ordinate their information. It is fixed, for now but it will be a while before I trust that things are being covered correctly and this will only lead to more time spent on the phone just making sure things are right. Awesome. [Side note on this. People I have spoken to about this who are in pretty good health never seem to think that its that big a deal. “the paperwork will get fixed” they say. “Its a no brainer, once they see its not your fault it’ll be fixed right away” They say. This is naive thinking. The only priority for my large insurance company who will remain nameless is to spend as little money on Liam as they can. That’s how they stay in business. They are and always will be looking for a reason to drop us from their coverage due to the fact that Liam’s lifelong medical needs will cost them enormous amounts of money. The threat of them denying me future coverage because of Liam’s “pre-existing condition” (namely – birth) was very, very real. The for profit Insurance based health care system in this country is severely broken]
  • Liam got his RSV vaccine yesterday and his H1N1 booster today. That’s a lot of shots for Liam in two days and it didn’t take long to see it really mess him up. It seems that according to his neurologist, both vaccines can reduce the effectiveness of his seizure meds while also inducing more seizures. He had seven seizures yesterday and to be honest I have lost count of how many today. (He had 2 in the time it took me to write this post) Hopefully this wears off tomorrow or the next day as it should but it is difficult to see him so uncomfortable so often. The worst part is that other than picking him up and snuggling him through it, there is nothing we can do to help him feel better. Add to that the fact that it is suggested we not give him tylenol tonight because it reduces the effect of the H1N1 vaccine; poor kid’s head must be pounding.

I guess that’s the extent of my list and in the grand scheme of things I have very little to complain about. My boy is at home and not in the hospital. I have a job in these very trying economic times. I have the weekend off from said job. My son’s condition forces me to pick him up all the time to hug him and snuggle him and rub his head and comfort him. His first christmas and birthday are fast approaching and both are going to be wonderful celebrations of how far he’s come. Liam just fell asleep in my arms and Garden State just started on cable. On second thought, I guess I’ve got things going pretty well. Happy holidays everyone.

Living in the Future.

Even when I was working hard to become a photographer I didn’t do all that much photo “editing” in Photoshop. Nothing excessive. A dodge and burn here and there but mostly a tweak of the levels and trying to get as much done in the RAW conversion as I could. I used to think that maybe it would be best to just shoot jpeg and save myself the step. Now I know better. I need my photo editing computer up and running because posting these shots only using the editing of Picassa is killing me. I need control! Photo was taken by the wife the other day. Good stuff.

Photography frustrations aside things are going pretty well. Work has been getting better. It seems that I really did win the most recent long running battle with the insurance company and they are going to do the right thing. Although we still have occasional “events” here and there, the seizure meds are working well and the tweaking of his doses has Liam awake and alert for much longer stretches of time. Physical therapy is going well, Liam and Mom learned some new exercises today while I was at work and he just keeps getting bigger and bigger. Nursing care can still be tough because we just want to have our own house to ourselves more often but boundaries are being set and we are better at letting our expectations be known.

I hung our first Christmas wreath on the front door yesterday. Family tradition states that just like we used to say in my church as a kid “Merry Christmas and may it last ’til Easter” we will keep it hanging until Easter. The trick is to flip it over around groundhog day to get a bit more green needles for your buck. I will post a picture soon and hope to hang more lights soon to go along with the wreath.

There’s still a bit of white stuff on the ground but it is icy, crunchy stuff. I’m looking for the fluffy stuff. The stuff that can quickly have you looking at more than a few inches to shovel but if you get out there before it freezes together will push right off with ease. Staying home with my wife and son during a major snowstorm is another one of the dreams I’ve been waiting so long to come true. During last winter we had a few pretty major snow storms with some good accumulation. Through it all, Karin and I made our way back and forth to the hospital every day. Looking forward to a day when we would be able to see our son without changing out of our pajamas. A warm cup of cocoa, the morning paper, fluffy white stuff piling up outside and my boy with me on the couch. I can’t wait for that. That’s why I’m hoping for big snow storms every weekend this winter.

I’ve started reading The Hobbit to Liam. It’s been so much fun. We aren’t very far into the book and I’m already struggling with my voices. All those dwarves and Gandalf along with them is proving to be a bit low for my range and I’m needing more pauses for water. But Tolkein’s conversational storytelling style along with songs makes it so much fun to read. This was an important book to my family as my father was so taken with it that I can remember him reading from it at the dinner table when I was a kid. The nurses and Liam’s mom read him the big large picture books showing him brightly painted penguins and elephants but I like it just the same to have Liam rest his head on my chest with only my soothing voices comforting him to sleep.

Karin mentioned the fact that we had a photo shoot for a holiday card on her facebook page and within minutes we had about a dozen emails of peoples addresses to receive said card. It was a bit strange how quickly it happened. It is incredible how this baby boy who has been so sheltered from people and germs that he has yet to meet all of his family that even live in this area has touched so many lives because of the internet. We truly are living in the future.

Holiday Card Day.

Karin has been trying for days to get a couple of pictures of Liam in a holiday looking outfit so that we could make our Christmas card. All attempts were busts and so a change of strategy was in order. Liam is very photogenic but he makes you work very hard to capture his brand of adorable magic.


Instead of having some sort of plan for a photo shoot time we decided to just keep him in holiday clothes with holiday blankets all around and just shoot all day rather than putting some pressure on a few hours here and there.


Although none of the pictures truly scream holidays we did get enough to send out a pretty cool card. Karin and I are pretty unorganized people and we have never sent out cards in the 7 years that we’ve been married. This year we wouldn’t be able to get away with not sending out cards. Everyone wants to know how the baby is doing.

He’s doing just fine by the way. We had an ok weekend even though I had to work yesterday. Today we spent the day together watching yesterday’s snow melt out the front window and screaming and yelling at the patriots on TV. We read the first chapter of The Hobbit aloud, during which I gave myself a sore throat trying to come up with voices for all those dwarves.

My sister spent the day with us watching the football games and then after going home to finish her laundry came back in the evening with my parents who made us all meatloaf, mashed potatoes, corn and bread. We all ate and laughed and had general storytelling and merriment. The visitors all headed home before 8pm which left a few hours of quiet and privacy before the nighttime nurse came in at 11:00pm. A very nice and relaxing day which could have only been improved with a patriots win over miami.

Snapped this today just in case any of you wanted to see what three days worth of Liam’s meds would be dispensed with. This gallon sized ziploc holds all of the syringes used from Friday morning at 6am to Sunday evening at 8pm. I suppose I could do the math but I think the picture is much more fun. Tonight they’ll all be separated, boiled and organized by size for re-use.

Beers and Bedtimes

As promised over the weekend here are the pictures of Liam’s Lager. Brewed by my brother and aged 153 days or the same amount of time that Liam stayed in the NICU.

Just wanted to get the pictures up and make it a quick post tonight. Liam’s new medication doses have wreaked havoc on his, and our, sleep schedules. The side effect induced insomnia had Liam falling asleep last night at about 10:30 this morning. No sleep in this house for about 20 hours. Dr.’s have been called and doses have been re-adjusted and hopefully we can all get back to resting when we should soon. Just a matter of Liam’s body adjusting to the new meds. Until then, he’s in charge of his sleep schedule and we just have to accommodate.

Night nurse tonight and so its off to sleep I go. Like I said, quick one tonight.