Sunday, November 29, 2009

Don't tell my boss

The use of the desktop blogging service Zoundry Raven is not going well which is a crying shame because I absolutley love the user interface. If it would actually post to the blog then we'd be all set. I'm being a very bad boy and posting this from work but I hope to have all of my technical difficulties worked out soon.

By the way, Liam is doing wonderfully even if he is a bit groggy as he gets used to his new seizure med. It appears to be working (please knock on wood for me when you read that) but it will take some time for him to adjust and not be so sleepy all the time. He had a nice visit from some of his NICU nurses yesterday and he loves it when his Uncle Phil and Aunt Jannah are in town from Chicago.

And now, work.

Zoundry Raven

Trying to use a new free desktop blogging client called Zoundry Raven without much success. I like the UI for the app but it is proving difficult to actually post. Trying this test to see if its because of the images.

Saturday, November 28, 2009


That is all.

A year without holidays

The title is true, it has been a year without holidays. All of the previous holidays of 2009 were spent in the hospital and although now home Thanksgiving was no event either. Karin and Liam stayed home while I went to work. My mother had all of the family over at her house but the crowd and so many people travelling from all over the region means waay too many germs for a visit from the baby. He did have a few visitors at home though. The most important being his Uncle Phil and Aunt Jannah who drove in from Chicago in a rented Smart Car. (they made quite a splash with the car when they parked it facing the road because there wasn't any space long enough to parallel park.)

I missed it all of course while working all day at a place that makes me miserable. Awesome.

The Wife did send me an awesome photo that she took with her phone to cheer me up. Check it...

Uncle Phil brought with him his latest homebrew. Liam's Lager was brewed with yesterday in mind as its first drinkable day. It has been aged 154 days, or the same amount of time that Liam spent in the NICU. I will post pictures tomorrow of the bottled product as the labels contain a truly bitchin logo designed and drawn by Liam's Aunt Jannah. (yeah that's right, I use the term bitchin. deal with it.) The beer is delicious which didn't surprise me, as all of my brother's brews that I've tried have been good, but this one is fantastic. Karin loved it too and she is not the biggest beer fan in the world.

As far as Liam updates go there isn't much to tell. He's freaking awesome. Nuff said.

The Sandman series continues to be my only reading although I'm hoping to hit the library before Monday. I added a Goodreads widget to the right that will always show what I'm reading. I think the Goodreads site is fun but I don't have enough friends to get recommendations from so if you know anyone on Goodreads let me know.

Its been linked to everywhere but this is a great interview with Cormac McCarthy about The Road as novel and movie. I loved this book. I read it on the plane ride to Chicago last year and had to stop to cry a number of times. The relationship between father and son hit me hard as I was expecting the birth of a son myself. Which is why I am conflicted about the upcoming movie. There is a big part of me that is excited to see Viggo in the role of the Man but I am terrified that it will fall completely flat and tarnish my view of the story itself. If its OK that's one thing but if it truly falls flat will those images replace my vision of the great apocalyptic tale? Whatever -- I haven't seen a movie in the theater in over a year its pretty silly to think I'd start now. I have time to put this decision off. Just go read the book before you see the movie alright? Good.

Lately I've noticed that when I'm at home I don't even notice the noise of Liam's ventilator but when I'm anywhere else all I can notice is its absence. I don't exactly miss it but I can't help but notice its not there. Its hard to explain.

As I type this post the Foo Fighters have been playing on the VH1 Storytellers show. First of all, where do they get off being together for 15 years now?? 15 years? Damn I'm old. Anyway, how is it that I have not seen these guys live yet. Seems that they put on one hell of a good live performance. Damn these guys are good.

And now, sleep.

Saturday, November 21, 2009

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!

Tuesday, November 17, 2009

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.

Sunday, November 15, 2009

Is it still legal to write something without mentioning Vampires?

Firstly, a quick note about the photos. I used to take a lot of pictures. I mean lots of pictures. I got pretty good at I think, but I stopped for close to 6 months as I spent more time in a hospital than out of it. As a result I am very off of my game. Instead of RAW I have gone back to using JPEGs because I haven't even unpacked my desktop computer that I do all of my photoediting on. We moved in April. Not wanting to clog up the laptop that both Karin and I use all of my edits to the photos posted here have been done in Picassa. Which is a great tool for photo organizing but shit for editing. I hope to have that fixed by the end of tomorrow and so I hope that the quality of the images here will improve. I try not to rely on my software to fix photos but I do like finer controls on setting my levels and white balance as well as better sharpening tools.

In a related story Karin and I made wonderful progress on our relocation to the second floor today. We'll be sleeping up there tonight, taking turns of course. Tomorrow the "office" side of the floor will be finished (hopefully). My mother helped a great deal by babysitting for us. Her expression when we asked her to babysit was priceless. It is one of the hardest parts of Liam's medical needs that we can't call on those closest to us to help take care of him. Even though we never left the house having someone there to hold him and engage his attention freed Karin and I to get some serious work done. After a day of moving furniture, organizing medical supplies and unopened boxes from the move Karin and I sat back and admired our accomplishment. We looked around our new room and at each other when she said it. "You're going to write your book in this room." She said with a smile. She's absolutely right and I am so happy she pointed it out to me.

The Vent. I talk about it enough and today it occured to me that I should put up a pictures so you could see what I'm talking about. This is Liam's LTV (or LapTop Vent) 950. It is his stationary vent. It is on wheels and so not exactly stationary but it stays in the house rolling between his bedroom and the living room. It is hooked up on one side to an enormous liquid oxygen tank and on the other to a heater/humidifier before ending up hooked to Liam. The blue velcro straps taped to its front are a template for Liam's trach ties. These small straps are changed daily and hold Liam's trach in by connecting around his neck. They need to be cut precisely to fit and so the template helps us do that quickly. Liam has another vent for traveling that does not have a big stand with wheels but comes in a backpack for ease of carrying (typing that just made me laugh out loud).

Here is his vent set up next to Liam's Pac-N-Play. This setup is for when he is in the living room with us. Most of that time is spent on the floor or in his new Special Tomato which is a piece of physical therapy equipment helping him sit upright. When he needs to lay down for a break or for naps he lays in this. The small blue box on the stand to the left is his feeding pump. The blanket hanging over the banister was the covering that would be draped over his isolette (formerly known as an incubator) to give him darkness when he was in the NICU. The small patch of orange fuzz sticking out of the pac-N-Play is Levon the Lion. Liam's favorite toy in the world.

Liam loves his circuit. He can often be found holding onto his circuit while sleeping. I think he knows that they are there to help him. Before he got his trach we heard that babies love to pull their tubes off but Liam has never tried. He's disconnected himself when the tube gets caught on his foot, but he's never done it on purpose. If you just read that outloud please knock on wood for me. All we need is for Liam to figure out that if he pulls it off alarms will sound and parents and nurses will come running. Its a pretty good way for him to get attention.

This is the Special Tomato mentioned above. I think it makes him look like a fighter jet pilot. He fights it for a few minutes but once he realizes that we aren't going to take him out he gets over it and goes to sleep. The frog toy is an Eric Carle toy and as soon as Liam woke up and saw it there he smacked it across the room. Make a note: Liam does not like frogs.

Am I the only one who kept thinking "why the hell are all these lists coming out about the best of the decade?" for weeks before realizing that we are less than 2 months away from 2010?? 2010?? Really? That does not seem possible.

Pictures of terrifying scarecrows. The fourth one down is awesome.

Saw this in a bunch of places already but still think its cool. A flow chart of Hey Jude.

Film clips from TV, and movies that come together into a wonderful song. Just watch it because its hard to describe. The time it must have taken to make this is impressive.

Internal clock has gown so screwy that I am sitting here at 3:10am and I am wide awake. Picked up the 3rd, 4th, and 5th volumes of the Sandman collection from the library yesterday. Going to read until Karin wakes up to relieve me of my post in a few hours.

Night all.

Thursday, November 12, 2009

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.

Tuesday, November 10, 2009

You'll get a hang of the routine in time.

Night nurse = 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.

Sunday, November 8, 2009

The Books I love to Re-Read.

It has been an absolutely wonderful weekend. More time with Liam than I have had in a long time and he was rock solid the whole time. Karin got the sniffles so we benched her and I subbed in as chief snuggler, feeder, pharmacy and diaper changer. We had a great deal of fun and I enjoyed the responsibility.

I watched Rainn Wilson's The Rocker on HBO the other night and loved it. I decided to give up on Palahniuk's new one Pygmy as it hasgotten too violent for me. I listened to my friend Anthony's band's (Barn Burning) newer album Werner Ghost Truck and loved it. Hmmm I guess that's it for this weekend. I did watch me some Law & Order's this weekend though. All types too! SVU, Criminal Intent and both old school and new plain old vanilla. Oh, and I watched as the Patriots marched over Miami on their way back to the playoffs.

I don't often give up on books. I like to try and trudge through to the end hoping for some kind of twist moment that makes me all of a sudden adore the author or style as if it just took time to appreciate it. Sometimes I just can't make it through, but instead of wanting to read any of the titles I haven't read yet that sit on my shelves I'm thinking of re-reading Catch-22. Again.

There are a few books that I go back to every few years. Some of them during specific seasons. Here is a list of a few...

Cat's Cradle by Kurt Vonnegut. This one I've read far more than any other book. changed the way I looked at books and the way they were written. I carried a copy of this in my backpack / Overcoat pocket for most of my early 20's. If I ever want a jolt of inspiration or motivation I read Cat's Cradle. I definitely read this once a year as it can be read in one sitting; Most years though it probably closer to 3 or 4.

The Lord of the Rings by JRR Tolkein. My father was very adamant that I read Tolkein's masterpiece when I was in the seventh grade. I have read it every 2 or 3 years ever since. Fellowship feels like a warm cup of hot chocolate to me as I almost always start it on January 1st. A Bi-Annual tradition of sorts. Come in from the cold of a blustery wintry day to warm up of thoughts of Rivendell and Lothlorian. In a comforting coincidence because of their release dates the extended release DVD's of the movies have also become a holiday tradition for me and my family which serves as a nice warm-up for the re-reads.

The Grapes of Wrath by John Steinbeck. The great American novel. My Wife and Mom hate it when I read this one. All it does is make me depressed for a couple of weeks. I cry every time. Sometimes we need to read things that make us sad, and angry, and frustrated, and yes, even depressed. It is so exquisitely beautiful in language and tone. Steinbeck rivals Vonnegut as my favorite writers of all time. (Truth be told, I'm a few years overdue for a re-read on this but I just don't think I have the strength to endure it. As the father of a very sick infant I have enough stress and as an aspiring writer I don't think I could take the internal comparison and criticism of my own work this would bring. How could I possibly think I could come even close to creating something as wonderful? And if I can't, then why bother?)

Catch-22 by Joseph Heller. By far the funniest writing I have ever read. I, like most, read this in my freshman year of college and was laughing all the way through. Are we allowed to make fun of military service during WWII? I wasn't sure but I was so glad that Heller did. This is a summertime read for me. It always seemed hot on Pianosa.

The Hitchiker's Guide to the Galaxy by Douglas Adams. The not-to-be-overlooked runner-up in my funniest books category. My good friend Patrick Farrell introduced me to Adams and although at the time I was unable to understand some of the subtleties of British humor it was Adams that prepared me for Monty Python not the other way around. Heller and Adams showed me that serious literature with real messages could also make people laugh so hard they get stared at by the strangers around them on the bus. An Autumn read. I have no idea why on this one but I always seem to read it in the fall.

There are a few more beyond that but I'm getting tired and those are the important ones. Someday I'll put together a list of the short stories I keep going back to over and over. Hope you like Flannery O'Connor, Dan Chaon, Vonnegut (of course) and Twain.

Saturday, November 7, 2009

The Days are Just Packed.

Liam's care can be very intensive at home and with me back at work much of that falls to his mother. The weekend is the time when I need to make it up to her by giving her a break. Its a selfish act really because the hours of the day when I work are Liam's most active and alert. His twice daily medicine regimen has him pretty drowsy both before and after my work shift. The weekend is my time to play.

I wanted Karin to get a nice long night's sleep last night so I told her to sleep all night and I would handle all alarms, suction, and med doses. She let me get a few hours sleep in the morning and then the real fun began. She plopped him into my arms as soon as I poured my first cup of coffee and the two of us drifted in and out of sleep watching the TV on the recliner. There is no better way to start a weekend.

My Mother-in-Law came for a day visit and spent the early afternoon holding The Boy and catching up with us. I knew that Karin has not left the house since we came home from the hospital so it was time for her mother to take her shopping so that they could get some alone time. Karin needs more time away from it all to decompress so I was very glad that they really took their time. Liam and I spent the male bonding time reading and watching TV. Law & Oder Criminal Intent is one of Liam's favorite shows so he was happy to see that their was a marathon of it on cable.

Liam has spent close to 90% of his life on his back in a hospital bed so time in any other position is so beneficial to start strengthening his core muscles. We spent the rest of the afternoon rolling around on the floor. I snapped the photo above while we played with a exercise two. And we sat on the floor together to watch The Lion King. I forgot how much I like that one.

My Mom & Dad came over with dinner and we all had a great meal before my Mother-In-Law headed out for home and my parents followed suit a little while later. Karin and I got Liam ready for bed. Just before getting his big 8pm med regiment Liam rolled himself over onto his side. A big move for a kid with the muscle tone issues Liam has. This may be why he has been sleeping through the night lately. He can finally make himself more comfortable by repositioning instead of needing us. We'll take any kind of Independence we can get from Liam. It was a fun moment.

I don't think I could have written a better Saturday. I laughed a lot. I smiled a lot. I got to be the daddy I always thought I could be all those days in the hospital waiting for my turn to take care of Liam.

Friday, November 6, 2009

Blogging to resume after good night's rest.

Home nurse tonight. We delayed it for a full day to have some private, quiet, family time but our nursing care schedule kicks back in tonight. We'll have a nurse from 11:00pm to 7am and then another one tomorrow morning starting at 8am. Then it we'll have the weekend to our selves again. Its been over a week since either of us have had a nice chunk of sleep and so rather than stay up and write I am off to bed.

Night All.

Thursday, November 5, 2009

Because this song is freaking awesome and it makes me smile.

(Thanks Scalzi)

Just a bunch of Homebodies.

We're all home now! Liam was sprung at about 4:15pm. I'm pretty tired from work and kid stuff but I need to force myself into writing here at least daily. There was only one major event for today and it is the best news of the week so far! Home.

There was so much confusion as no one seemed to know what the plan was. Since 5 different doctors follow Liam's case no one quite knew who was keeping us there so long. Each one thought we were still there because another was waiting for some results or changes. Its that lack of communication and attention to details that made up the differences between being in the ICU and the regular hospital (or GenPop as I called it). Its quiet. As all of our experience in the hospitals were in the ICU, we weren't ready for the quiet. Less equipment running, less monitors beeping, less ventilators breathing. Quiet. I was also surprised by how little we saw of our nurse. Without sounding cocky - aside from starting an IV - there is nothing that a nurse would do for him that Karin and I have not been doing for months. We went close to 4 hours without seeing a single nurse today. Don't get me wrong I am not in any way saying that the nurses themselves were the problem. They were all knowledgeable and helpful when they could be but the job is simply different than ICU nursing. Instead of 2 patients per nurse in the NICU/PICU, I think the ratio was closer to 6 to 1 up on the regular floor. The nurses were relieved to have a set of parents as knowledgeable and as independent as we were because it left less work for them. All the more reason we should have been home. If we have no use for the nurses why did we need to be there? Well Karin and I made enough noise for them to just give up and say get out of here. We didn't need to be told twice. We were in the car about 20 minutes later.

The pediatrician has been called. Nurses won't start coming until Thursday because we need some time alone first. He is in tip-top shape and we are ready to start our third experiment in home living. I'll post pics when they're ready and I plan on posting some long pieces soon. Expect tweaks to the layout and design of the site too. There's lots happening here so make sure you tell your friends to visit.

Liam is sleeping comfortably and I don't see why I shouldn't do the same.

Night all.

Tuesday, November 3, 2009

NaNo No More

I didn't have to work today and so I got to spend the whole day with Liam in the hospital. I am surprised by just how dark it has gotten so early in the day. Every year it surprises me. As this is the first time Liam has had a hospital room outside of the intensive care units it is the first time he has had a room with a view. The natural light coming through has been wonderful but all of a sudden the room got very dark. Ever fall asleep in the daylight and wake up in the dark? Unsettling. I had to ask my wife what day it was.

Two posts in one day?! I'm not sure it will happen all that much but I have the time. The first was an update on Liam so I think I'll keep this one to non-Liam related things.

I'm having a hard time with the new Pahlaniuk book Pygmy. Trying to figure out what the narrator means in his broken English is distracting the flow of the narrative. I am trying to decide whether or not the plot so far looks promising enough to trudge through it. On the other hand I started reading Perforated Heart by Eric Bogosian. Its a quick read and I'm enjoying it, even if I have read many books that follow the same formula. Its the usual portrait of the artist type story. Yes the narrator even has his old journals from when he began his career as a writer. Troubles with the ex-wife and the girlfriend and the unending fear of dying alone. A bit cliche but an enjoyable read nonetheless.

I had every intention of participating in the National Novel Writing Month this year but here we are on the 3rd day of the month and I'm already 4500 words in the whole. I had thought that it would be the perfect way to stay productive as I stayed up watching over Liam every night. This visit to the hospital has put a bit of a dent in those plans. I may still start today though and see if I can't crank out some extra pages during the weekend. I have been preparing story lines and characters in my head for a few weeks now so I better get them down on paper soon before they disappear.

I want to make a little widget for my sidebar that will help me add up how many days Liam has either been at home or the hospital. Someday next year I hope that the days home will outnumber the hospital but that is a loooooong way off. A really looong way off. Anyone who knows how to create something like that pretty easily I would appreciate it.

RAWR! Halloween in the Hospital.

Cutest. Halloween Costume. Ever. Plain and simple.

I have been away from the blog while Liam is back in the hospital. He's doing very well and at this point we are simply biding our time until he finishes a treatment. The five day course of inhaled antibiotics can't be given at home so we must wait until Friday before going home. Yesterday Liam was moved out of the ICU though which is a good thing. The Docs decided that he was less likely to catch something really serious (the true fear of coming to the hospital) up on the normal floor rather than in the ICU. Liam is comfortable and sleepy.

Liam's first Halloween was as fun as it could be in the hospital. We put him in his costume and had many nurses visit and take pictures. He was the best dressed baby in the unit. He had fun and so did his mom and I. The costume will be used again during his jungle themed first birthday party.

One of the worst parts about being in the ICU is the closeness to all the other patients. Not closeness in terms of distance but in the camaraderie and bond that is formed between families nearly instantly. Its a small and exclusive club; one that no one really wants to be a part of. Since you can only understand what this is like if you have experienced it your fellow patients families can be a comfort with only a head nod or a wave. And so it stands to reason that if one family has a truly terrible day, we all do. It is very hard to distance yourself from feeling that it just as easily could have been my kid rather than theirs that had to go through this or that. I don't want to get into specifics out of respect for every other PICU family but this stay has been very hard in that regard.

I thought that I would have all sorts of insights into our day to day life in the hospital now that we are back but it is so mind numbingly routine that there really isn't anything to tell. Liam sleeps, and eats, and poops, and not much else. We are constantly visited by respiratory therapists, nurses, doctors, physical therapists, and housekeepers. There isn't much to do other than hold Liam and read to him which I do most of the time I am with him. The TV only has a few channels most of which we don't watch. The windows to the room truly give a fishbowl feeling. As if all of the families are part of a big aquarium for the docs. I keep tripping over the bubbling treasure chest and Karin still finds enjoyment in swimming through the skull's eye.

Side Note about being in a private room at a Children's Hospital: Its hard not to feel like Gulliver when going to the bathroom on a toilet about 8 inches off the floor.