Tuesday, March 30, 2010

Same old song and dance.

A quick wave hello to remind you all that I'm still here and let any out of town friends know that we weren't swept away with the worst flooding Rhode Island has seen in 100 years.

Liam is doing very well and has bounced back in a big way from his little belly issue last friday. He rode out the storm with his mommy while dad worked and worried about being stuck at work overnight. I'm considered part of "essential personnel" at the hospital and had my attention focused on whether or not the Governor was going to declare a state of emergency which would have trapped me at work indefinitely. Luckily he didn't. I'm home now. The flooding is very serious in many parts of the state but we are surprisingly dry.

The lack of nursing help is really starting to take its toll on us. Sleep comes in short bursts for both Karin and I and we are really starting to miss it. I'm going to try and grab some winks right now as a matter of fact. So, yes, I'm still here. I'm still interested in blogging, and writing, I'm just more interested in getting some rest right now.

Friday, March 26, 2010

Crazy Week, Boring Blog Post.

Today was one of those stressful days. Where we walk that line of whether or not we will be hanging out in the hospital by day's end. I'm happy to report that I am currently typing this from my recliner while Liam farts away in his crib next to me. At Home. After three days without pooping (I know, I know more poop talk.) Liam was feeling bloated and uncomfortable all day. It's a slippery slope between a few days without a B.M. and not tolerating feeds and more importantly meds. With a bowel resection surgery in his history we would need an x-ray to check and an IV to administer both his anti-siezure meds and, ironically, his motility drugs. We've got an awful lot of medical equipment in my house but IV equipment and an x-ray machine aren't part of it all.

Still camping out in the woods and not out of them yet Liam did poop for us many times today which has helped but things like this can be tenuous until he is back to his normal self. Prune juice is helping move him along but the resulting gas can further distend his belly and cause unneeded pressure on his lungs. A ball of wax I would rather not mess with right now. He seems to have turned a corner over all though and we are optimistic tomorrow tomorrow will be a better day than today.

Instead of just raining, this came in the middle of a downpour. On Wednesday our little life of routine was thrown a curve when Karin and I came to the decision that our daytime nurse just wasn't the right fit for Liam and our family and asked the nursing company to assign someone new to the case. This is something that is very common in the homes of home-nursing patients but the first time we've made such a request. I have fired people in my various day-job positions (though not my current one even though I've been there almost 5 years.) but this was different. While this is most definitely a Job to them, we are in essence "firing" them from our lives. We made the request on her day off and her supervisor was accepting and understanding of our decision (as if she had a choice in the matter) and would assign her to a new case immediately.

Except that due to a communication slip our nurse was not informed of the change and both she, and our new nurse arrived the next morning for duty an hour before the nursing company office opened. I would have to give her the bad news rather than her boss doing it. I should mention that I am not saying that she is being fired from her Job. Just from this job. She will be re-assigned somewhere, as she should be but it may effect the amount of hours in her paycheck for the next few weeks. I calmly sat her down at my kitchen table and professionally listed the specific instances that bothered us and caused the change and told her that we have asked that she not return to our case. She bid us good luck (without even asking to say goodbye to Liam, the patient, of 6 months.) and left.

I am still reeling from it all honestly. This woman spent 7 hours a day, four days a week, in my home helping take care of my child for 6 months. I don't particularly mind being the "bad guy" and disagreeing or being frank to anyone when it comes to taking care of my boy, actually I'm pretty good at it, but when the job in your home the level of familiarity can make it difficult to not fear hurting some one's feelings. By the job's very nature the lines of personal/professional are blurry. How can they not be when this woman has seen me in my pajamas? ( one of the many annoyances of home nursing is not being able to wander half-asleep to the bathroom in my underwear. Pajamas no matter the season - Booo!) Nonetheless, the change was necessary and once the next month of transition is over we can bounce back into some sort of routine.

For the next few weeks the company will try and hire a new nurse with trach and vent training to take our case while we take care of Liam ourselves. Karin and I are excited at the time we will get to spend alone as a family. While the level of Liam's medical needs make nursing care a long term necessity for the benefit of the entire family we are fully capable of going it alone in the daytime for a few weeks. Today alone proved we (admittedly this we is like 80% Karin 20% me, as I spend the days at work) have the skills to take care of him. We will still have our night nurse three nights a week so we'll be able to get a slightly better night's sleep almost every other night.

Tonight there's no nurse but that's ok. Karin is sleeping after a long and tiring stressful day and I am decompressing with the boy after a long tiring day at work. Hopefully Liam tolerates his overnight feed fine and we move on to the next thing. Otherwise we muscle through another day of worrying about going to the hospital. Either way, all three of us will get through it.

Sunday, March 21, 2010


It took far too long to get done. I was for health care reform when the Clinton's proposed it in 1994 and now that the terms "pre-existing conditions" and "lifetime caps" mean so much to my life I am rabidly in support of health care reform. This bill may not be perfect, in fact I don't think that it is nearly progressive enough, but its a start.

I spent the day at work checking the whip counts like I was checking a sports score. Tonight I made Karin put C-Span on so that I could watch the 216th vote be cast. A few months ago I didn't think I'd be able to say this but tonight I am proud that I am a democrat and even prouder that I am an American.

Thursday, March 18, 2010

Oh, The Joys.

Disclaimer: I feel it only fair to warn you that this post may seem to stink to some but a home with a baby is a home that talks about poop. It can get graphic. You've been warned. While I'm here adding a disclaimer after writing the post, can you tell I read a cool post about semi-colons? (hat tip to Cherie Priest, whose book, Boneshaker, I am currently reading.) It helped out when editing tonight.

What gets poop out of couch upholstery? No really, I'm asking; what gets POOP out of couch upholstery?

Liam didn't poop for the first 40 days of his life. We have had bowel movement issues since day one and ever since an eventual bowel obstruction leading to a resection surgery at about 6 months, we celebrate poop. We have prayed for poop and at times have literally danced upon its arrival. The usual first time parent attitude about how cute their baby's wittle poopie-woopies are lasted extra long for Karin and I but its pretty safe to say that we've seen the last of that attitude tonight. Did I mention that there's poop on my couch?

Liam had a doosy tonight. We are talking code red bio hazard, emergency cleanup mode doosy. Parents will know what I'm talking about when I say he had one right up the back. He was sitting up on the couch like a big boy all afternoon and by the time we realized he needed a change it was too late. Time to get the tub ready.

With the challenges that we have had and will continue to face, Karin and I celebrate the "normal" things. The universal moments that ALL parents face. These are the things that keep us grounded when we spend nights trying to sleep in hospital chairs and when we worry about battery back up power because breathing equals electricity in our world. This is just one of those things that I wish we missed out on though.

You know what I'm talking about parents. A real tag-team diaper change situation. All hands on deck; I actually had to have Karin take over so that I could change my clothes. To those of you who don't have any children this may sound pretty gross and hard to believe. It is gross, but believe me. Please believe me! You will understand someday. Oh the joys you'll understand.

I'm thinking about just burning the couch cover. Next time I'm going vinyl.

Wednesday, March 17, 2010

St. Patrick's Day

Aack. So I take a few days off from blogging and now I have too much to report. The sun is shining and I am just chomping at the bit for Liam to finish his nap so that we can go outside and play. Initially I had a great plan involving kite flying planned for the afternoon (inspired by this thoughtful and fun blog post.) but failed to plan ahead and get the necessary equipment. Namely, the kite itself. I'd love to run out and buy one now but I promised Karin that she could nap while he napped so I don't want to bother her. Ah well, the warm weather is just starting and there will be other days for high flying fun. I suspect we'll go walking around the graveyard again as soon as Liam wakes up.

We all had a very nice weekend. On Saturday I was asked to take part in my cousin's Eagle Scout Court of Honor which made me very proud and gave me a chance to hang out with my dad for a few hours during the 2 hour drive out to Springfield. It's the farthest from Liam I have ever been since he was born. As we got about 45 minutes away, I started to get a very uneasy and unsettled feeling in the pit of my stomach. Even while I am at work I am only minutes away and can rush home to help in case of any emergency. Not really the case when you start getting further and further away. At about the hour and a half mark a realization washed over me that at that point no matter what happened Liam and his Mom would be on their own. No matter how serious, there was nothing that I would be able to do to help the situation. I usually get very frustrated when there is something that I can't help with. I'm a fixer. I need to be able to control the situation. Even when we had to call 911 to take Liam to the hospital last October I was telling each of the EMT's what to do and where to go, a situation I'm sure they appreciated by the eye rolling and attitude I received. There is only one other person on this earth who knows how to take care of any emergency with Liam. That is of course, his mom. Liam has seen dozens of doctors and easily more than a hundred different nurses in his short lifetime but unless we are talking about major surgery only is mom and I can take care of him. At the point of no return I realized that it was all up to Mom. She would have to do it without me, and somehow that calmed me. Since there was nothing I could do from so far away it freed me up to simply enjoy the afternoon. Had I been closer to home I would have been constantly thinking about rushing home to help out but in this case I could just enjoy the ceremony.

After about 4 hours though, that sense of calm wore off and it was time to get home as quick as I could. I missed him and being so far away started to again weigh me down. It can be frustrating that Karin and I cannot simply call over a babysitter and take off for a few hours together but I don't think either of us really want that to happen. The only way that either of us can be comfortable leaving him at all is when we know that the other is with him. While I did have a fun afternoon that day I think I'll be staying somewhat closer to Liam for the foreseeable future.

On Sunday Karin's parents came up from NJ for a visit and we all had a great day of watching college basketball while Grammy and Opa took turns holding Liam. Hopefully sometime over the summer Karin and I will be able to work out some kind of arrangement with our oxygen supplier to make a short visit down to New Jersey so that Liam can meet his cousin and visit his grandparent's house. We'll see.

Monday was marked by an appointment with Liam's Neurologist that went exceptionally well. Karin and I are unbelievably lucky that we have been able to surround Liam with some of the best and brightest specialists in the northeast. Dr. G. is a leader in his field with a specialty in the same brain disorder that Liam is diagnosed with. Liam did very well at the appointment behaving very well for his neurological exam and showing Dr. G. how much progress he has made. After the appointment was over Liam and Karin walked over to my office to meet some of my staff and co-workers who have waited so patiently to meet the baby they have heard so much about.

Yesterday was a day of rest and then today we had another appointment with a whole other set of doctors and a hearing assessment that was inconclusive. Gotta love putting your kid through a whole bunch of uncomfortable positions only to be told that no results were gotten. Awesome. In true Liam fashion we'll have to go for a bunch more tests including another hearing test that he'll be sedated for. We have a couple of procedures upcoming so we are trying to have two of them done at once t minimize how many times he needs to go under anesthesia. Coordinating doctors though is just a bit more difficult than herding cats though so I'm not holding my breath.

Well Liam has woken up and needs a change. Once I get that done its time for this boy to get a healthy dose of vitamin D. The beautiful weather outside is calling and he's been couped up in this house for far too many months. Happy St. Patrick's Day everyone, now go out and enjoy the weather before I beat you with my shillelagh.

Saturday, March 13, 2010

Too much information.

When Liam gets upset his heartrate goes up. It goes up when he poops too. I know this because a big yellow machine attached to his foot tells me so. When Liam sleeps he breathes at a rate of 26 breaths per minute. Not 25 and not 27 but 26 breaths per minute. I know this because the big machine that is attached to his lungs tells me so. When Liam eats his breakfast, lunch or dinner he eats exactly 100mls of formula. Overnight he eats exactly 250mls more of formula to make sure that he gets 409.2 calories per day. I know this because the feeding pump that is attached to his stomach tells me so. When Liam hears his daddy come home from work it makes him very happy. I know this because he opens those eyes wide and gives me an enormous toothy smile. There aren't any machines that can read that data.

Next I'll have to go through all my vinyl.

I spent much of the evening tonight gong through a big old box of CD's that I found in my basement the other day. Many of these CD's have not yet made it onto my computer or my ipod. a wonderful stroll down memory lane that will no doubt continue all next week as I listen to some old gems from my youth while at the gym.

How many of you out there remember this little ditty?

Thursday, March 11, 2010

You feeling Lucky? Well are ya?

I'm tired. Exhausted really. Baby not sleeping at night, first week back to work since vacation, going to the gym every day, blah, blah, blah. Excuses, excuses. Home, gym, work, home, gym, work I just don't really have a whole bunch to blog about. I know, I know you are all heartbroken at my lack of correspondence. You've all been holding your breath waiting for some wonderful new updates haven't you?

Anyway, why don't I do what I always do when I complain about having nothing to blog about Random thoughts bullet style. Time to empty the clip...
  • The V key on my laptop is not working very well. I suppose it would be more annoying if it were a letter that I use more often but I use the V just enough that it throws me off my rhythm every time.
  • Liam is doing wonderful. So wonderful that there is nothing new to report. Always remember 'no news is good news' it has been a motto of sorts for us since he was born.
  • Thanks to a spark of inspiration a few nights ago I wrote about 1500 words of a new piece of fiction. I really like how its coming so far which is why its so puzzling that I'm jinxing it all by writing about it here.
  • I read an article the other day that says the average (had to be written three times thanks to sticky V key) American claims to have read only 4 books in the past year, and that 1 in 4 Americans didn't read any books last year. 4 Books?! Seriously? And we wonder what is wrong with this country. We're surprised that our time as the world's only superpower is drawing quickly to a close. 4 Books. I've already doubled the national average for this year and its the first week of March. On the same day I saw a trailer for a movie called Mcgruber. This is a movie based on a four minute sketch based on a lame TV show from the 80's. That's right a movie based on a sketch based on an old show. And millions will line up and pay hard earned cash for it. I can't help but think that the two points here are related.
  • They are playing baseball in Florida right now. Anyone who knows me in person knows how tremendously happy that makes me.
  • I know what you're thinking. Did he fire six shots or only five? Well, to tell you the truth, in all this excitement, I've kinda lost track myself.
  • It's 1:00Am and Liam has just woken up so its time for me to hang out with the boy and hopefully he'll fall asleep after we read a few books. Once I get him to sleep it will be time for me to sleep. Because as I said before, I'm exhausted.

Saturday, March 6, 2010

The Days are Just Packed.

I had big big plans for this week away from the day job. Big plans. Work to be done around the house, fiction to be completed, and some longish blog posts on surviving a long term hospital stay without losing your mind. None of that got done. None of it.

But that's ok with me because what I did do with the time I should have been "productive" was so much more fulfilling. All week long the only thing I did was spend time with my boy. We read together, we napped together, we stayed up until 5am together. It was wonderful. It would have been nice to get a whole bunch of projects completed this week so that I could look back on my To-Do list and be proud about how much work I had gotten done but I wouldn't trade one single second of the wonderful time with my boy.

So here are the pictures in a tidy little slideshow. Starting with a nice walk we took to my Nan's house and going through the pictures I took of our trip to the zoo.

Wednesday, March 3, 2010

And what a voice it is.

The three of us just returned from Liam's VIP clinic appointment. Although Liam is a very important person the initials in this case refer to the Ventilator Integration Program. We meet with a number of Liam's services at once here and it makes it much easier than having to visit them all in separate appointments. Today it was his pulmonologist, a pediatrician who is following Liam's case (though is not Liam's "pediatrician" proper) a speech pathologist and his neurologist. Liam did great.

The appointment went very smoothly and there are no major changes to his care but we were able to take a very encouraging and exciting step forward today. We got to hear Liam's voice again! The first time since he had his trach put in last July. The trach that Liam wears has what's called a cuff that inflates to fully block his airway from air escaping during both inhalation and exhalation. Today we deflated his cuff which opens up the space around the trach tube to airflow, thereby letting air pass by his vocal chords again. Its the first step towards using a speech valve in his ventilator tube which would let him use his voice more often but for today it was just a trial to ensure that his lungs could handle the extra work of staying inflated on their own. He passed with flying colors. He gave us a groan to let us know he still had a voice.

The whole process will take a few months before we get a schedule to wear his speech valve but today was a great first step.

I wasn't planning on this post being much more than a quick wave hello while I wait for Karin to get back from the gym; But I do have pictures from yesterday when we took a family trip to the zoo! We saw animals from all over the world. Liam's favorite?? The geese found outside the zoo in the parking lot. That kid of mine.