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.

All seizures all the time!

It's been an extremely long week. I will try to recap...

Monday -- Liam has his longest and most severe seizure needing Diastat to break him out of it. We also notice that his seizure activities were starting to change. Rather than one strong event these were looking like a cluster of many, many short seizures over 15 to 20 minutes. I mention to Karin that this must be infantile spasms. A common type of seizure for kids with Liam's syndrome.

Tuesday -- A few more seizures that seem to upset Liam more. Neurology contacted but not much they can do until we see the doctor on Wednesday morning. In wonderful timing on Liam's part the appointment was made months ago. Also Karin gets deeper and deeper into a battle with the insurance company over a very, very important drug that we were already told would be covered but now they're dragging their feet.

Wednesday -- Doctor's appointments in the morning. First with pulmonology who were very happy with Liam's progress. No changes to vent settings. Then with Neurology who spent almost an hour talking with us about the seizures. He diagnosed the small clusters as infantile spasms pending an EEG for Thursday. The treatment will involve many eye exams in Boston to watch for a side effect that can damage the eyes. Liam's eyes are already damaged enough but the other treatment's side effects are even worse and the decision was a no-brainer. In the afternoon Karin continues her battle with insurance as they continue to drag their feet on a treatment that could potentially leave Liam susceptible to a life threatening illness. I'll get into why you're wrong if you're against health care reform in a later post, this post is supposed to be about Liam.

Thursday -- Get the whole family out the door bright and early to get to the hospital at 7:30am. EEG nurses are friendly and efficient and we are quickly processed and they fix the sensors to Liam's scalp. The test can last as long as 6 hours but we were hoping that Liam would help a little by showing us everything we needed to see. He did. He stayed awake for about twenty minutes, he slept for about twenty minutes and then he had one of his seizures for about twenty minutes. After it was through the nurses said they had everything we needed and sent us home. Liam was tired and slept most of the day. He has been sleeping most days this week as the seizures have taken a lot out of him. It has been difficult but we (mostly Mom while I'm at work) have done a good job of making sure he does all his physical therapy each afternoon. More phone calls to insurance companies, doctors offices, and pharmacies. Being Liam's Secretary is a full time job in itself.

Friday -- The doctor calls to tell us that the EEG results confirm his (and my) diagnosis and we need to get into his office quickly to sign all the paperwork to start treatment. Karin drops me off at work and heads there while we have the nurse in the morning. Liam is having more spasms but they seem to be less intense. We all hope that the treatment we have chosen works and works fast. The insurance company officially says no to the other treatment I mentioned. There are no alternatives and it is a med that Liam must have. It costs a little over $2000 dollars a month but luckily the state will be picking up the tab. Because Liam was born so small he qualifies for state aide which is the only way this family would survive. All companies and offices called and confirmed and we should have the med soon. Hopefully by Monday.

Through all that we also had our non-Liam stresses and obstacles. Sleep has been scarce and we haven't been eating well or exercising. My work sucks and I haven't done much reading and even less writing. Through it all, Liam has given us both so many smiles, hugs, and kisses. In one glance Liam can make all the headaches, the frustration and the aggravation melt away and be forgotten. Without him in our lives we may have a bit more free time and a little less stress but I wouldn't trade it for the world. Its truly a small price to pay for the joy that Liam brings to my heart each and every time I see him, hold him, or even think of him.

Posting to (hopefully) resume a somewhat consistent schedule. The In-laws visit tomorrow and I'm hearing good things about the weather. Things are looking up!

We'll call them blog McNuggets.

I still wake up in the dark of the night and the first thing I think to myself is - "I gotta call the hospital and check on Liam!" Even if he's right next to me. It happens a lot more often than I'd like to admit.

The seizures seemed to only get worse as the week and ultimately the weekend went on; with a grand finale of a seizure this morning just after I left for work. This one lasted about five minutes and for the first time he needed a diastat shot to break him from it. He slept for the rest of the day (you would too after a shot of valium like that) while Karin contacted his neurologist and got the new doses for his meds. We increased a dose of medicine and will be seeing the doctor on wednesday morning anyway. The appointment was actually made months ago so Liam's timing couldn't be better. He has been fine all day and all night but I hesitate to expand on that as it would be what we call - tempting fate. (yes, of course I'm knocking on wood as I type this.)

The big move to the second floor is still in progress but we are into the nitty gritty details now. Our space upstairs feels comfortable and welcoming and is a small escape from nurses and visitors. When your house feels like a clinic a nice quiet room is all you really need.

Liam continues to get bigger and bigger as I think I forgot to mention that at his last pediatricians appointment the big guy weighed in at 19 lbs. 12 oz. !!!! My little chubs.

We're all gonna pretend that last night's patriots/colts game just never happened K?

The Sandman Series is everything I hoped it would be. Great, now I have to go out and buy all the books.

The neighbors across the way set up their Christmas lights last night and a gauntlet has been thrown down. One that we simply can't compete with. Lights everywhere, an inflatable snowman and not only a large inflatable Santa Claus but also a large inflatable reindeer dressed like Santa Claus. They did a good job and it pleases us that we can see it all from the couch.


I'm hoping that the Redbox gets the new Star Trek movie quickly. We haven't been to a movie all year and so I have a lot of catching up to do. The Hangover, Inglorious Basterds, District 9, and Where the Wild Things Are are on the list too. I'm beside myself with excitement for Viggo in The Road too.

Liam decided to stay up all night tonight! Yay! So here it is 3am and he is still awake. Good thing we have no early appointments tomorrow. He may still be awake but I'm fading fast. Couch next to his crib is always comfortable enough for me, even if it is about 6 inches less wide than I am tall.


Night all.

A couple of photos and a quick update.

Nothing major to report from the homestead today. Liam had good days and slept through the night again. He's a bit cranky because he finally got his H1N1 vaccine yesterday (whew...) and he had another seizure this afternoon but just a bit of a blip and nothing worth worrying too much about. He has otherwise been active and alert and simply wonderful to be around.

He had a nice long visit with his Meme (My Mom) yesterday and another long visit from his Grampa (my Dad) today. Its a very good thing that Liam loves to be held.

We have been weaning his oxygen veeerrrry slooowly. He's down to 1liter of flow and could probably go even lower as he is satting at 100% most of the time. We have decided on a long term plan for the wean because of the severity of this year's flu season. Had we come home in May or April and facing the summer where less bugs spread we would be much more aggressive. Let's get through the winter before we make any major changes. He deserves to get some rest and grow stronger before we ask any more of him.

I hope everyone got a chance to thank a veteran today. Thank you, men and women of the military for your service.


I had to work today but only for a half day. Came home and met with a service care coordinator for Liam and then spent the rest of the afternoon holding my boy and reading to him. We played games and sang songs. There is no better way to spend an afternoon.

Karin and I are making breakthroughs and major decisions with the home nursing situation. It is a strange thing to have a staff of nurses in and out of your small house and as we have grown more comfortable we have grown more assertive. It is important that everyone in the house remembers who is in charge of all decisions...Mom is. Sometimes she even lets me think that I had a part in the process. We have made some room layout decisions that will give us more of a private space that Liam can come with us where we can escape. To run away from the stream of visitors and "staff" -- Physical therapy, occupational therapy, speech pathology, Nurses, medical equipment representative, oxygen delivery man, Nursing supervisors. More people have come through the house in the last month than we have had over to any apartment we've ever lived in. The second floor will become our little oasis. An island from the stress and chaos. A comfort zone. I can't wait to get started this weekend.


Got a bunch of cool links but not nearly enough energy to put a list together now. Now, we try and sleep.

Night all.

As usual I'm tired. I don't expect to post much other than a quick update. Liam had a couple of small seizures today. Neither lasting longer than a minute and he recovered from both of them on his own and without having to knock him out with meds. We will adjust his daily med doses with the neurologist tomorrow and hope that we can go longer next time between events. Unfortunately, seizures are just another thing that Liam's mom and I have to manage. He will always have seizures but they can be well managed with meds. Problem is we don't know that we need to adjust his meds until he shows us -- by having a seizure. We are very lucky in both the frequency and severity of these events. I don't mean to sound flippant or nonchalant about this but its just one more thing. Another item on our checklist of things to watch out for.

One of the other items on that list is Liam's G-tube and Mic-Key button which he has had for about 7 months. The button is a small tube with a closure that is a few inches from his belly button that pushes into his stomach and is held in place by a liquid filled balloon. Picture the air nozzle on a beach ball just sticking out of my kid's abdomen. It attaches his feeding tube and to be honest, makes late night feeding very easy. "Just set the feeding pump and walk away." That's right just like Ron Popeil says -- "SET IT AND FORGET IT!" Well tonight I saw a slight rise in his heart rate for a minute or two and knew something was irritating him but not enough to wake him. Sure enough, the balloon holding his Mic-key button in had sprung a leak and he popped it out. It couldn't have been out long because there wasn't much formula on the blanket so I popped the old one back in to hold the tract and got a fresh button. New one went in fine and Liam didn't even wake up! A bit of half digested formula aside neither of us were worse for wear and we didn't even wake up mom. He is more bothered by a diaper change than he is when I push a big piece of plastic into his gut. This kid cracks me up.

He's been sleeping through the night for us lately now that he can roll himself over to make himself comfortable so I think I'm going to hit the sack. "Sleep when the baby sleeps" they say but I doubt that they had the not so quiet sound of a ventilator by their head. Or pulse oximeters, or feeding pumps...the noise never.stops.

One quick note - in Liam's first days I was writing a Carepage, a blog set up by the hospital. It was a wonderful way to give updates to our friends and families on his early progress and our first days as parents. As Liam got older and we spent more and more time at the hospital I slowed and eventually stopped posting. I wanted more freedom in design and functions and it was a closed invitation only site. Some of the pieces posted there I am still very proud of, and some of the comments left were very eloquent and meaningful to me. I would like to post some of them here and add some reflections on them given my new experiences and knowledge. They will be compiled into a certain category and will provide some back story to Liam's long journey. I still haven't yet decided one thing. Liam's first birthday is the end of next month. It might be cool to post them on the year anniversary of their original posts. Each day that I posted there in 2009 I will post here in 2010. Might be fun no? Or I'll just throw them up willy nilly whenever I feel like it. I'm not what you would call a patient man and so I'm betting on the latter but I think the idea is a good one.

Night all.