Its all about Liam.

I'm blogging earlier than usual today as Karin is at the gym and I am up to answer any questions for our new nurse who just started. The first day with a new nurse is always a bit of work to put together. They need to get to know Liam. They need to get to know us. More importantly we need to get to know them and whether or not they will be a good fit for our family. These people are in our home; having a nursing degree and some experience is not enough to ensure that they'll work out.

So far so good with this nurse. She seems knowledgeable and pleasant enough. One concern is that she is allergic to cats. I can't tell you how many times we have told the agency about our cats but nurses who are trained to handle trach and vents aren't all that common and sometimes we have to take what we can get.

Our usual daytime nurse needed to take some time off which Karin and I can completely understand. It will take some time before we can both leave the house or sleep late again. Hopefully this new nurse will catch on quickly and Liam will like her and we can get back to planning our mornings to include running errands and going to the gym together. We'll see. Liam hasn't woken up yet so we aren't even sure how he will respond to her. I think he'll like her but we'll see.

Liam did great at his pediatrician's appointment yesterday. To get all the dirty details out of the way he is now weighing in at a lean 21lbs 7oz and 27inches long. He is now officially, and for the first time in his life, tracking along the growth curve. Gone is the ever increasing chunkiness he's now a lean mean pooping machine. We discontinued one of his GI meds and are on our way to getting rid of another in the next month. Yay!
Liam and his daddy at the Doctor's office.

He had to get his 12 month immunizations and so got 3 shots all at once and then needed a blood draw to check a CBC and Electrolytes. My boy is one tough cookie because he took all those needles like a champ. HE even fell asleep as the lab techs in the office hemmed and hawed over where oh where to stick him for the blood work. They were so distraught made worse by the fact that when they asked where he would get blood work when in the hospital Karin told them that he had to have a central line put in by a surgeon. They were not happy to hear that. They did their jobs well though because since they took so long t find just the right spot once they did stick him they were able to get everything they needed rather than be forced to make multiple attempts.

After his appointment we all came home and since I had the day off from work we were all able to take a nap in the living room together. Wonderful Quiet. It was a wonderful day. There truly is nothing better than taking a nap with the boy.

So there you have it. Liam has had an exciting couple of days and is still sleeping as we speak. It is possible though that he is playing possum and pretending to sleep because he doesn't know the strange older woman sitting next to his crib. He does that sometimes, hoping that if he doesn't open his eyes the strange woman will just go away. No such luck buddy, her shift ends at 2pm.

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.

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.