Sunday, January 31, 2010

Day three.

Day three has been the most eventful yet for Hospital Stay # 4. I just changed his fifth dirty diaper! A huge step towards getting better. He has been battling some seizures because with him so backed up the last 4 days not much of his medication has been absorbed into his system. After 2 days of trying we finally convinced enough doctors that the best thing to do is change his doses to be put into his IV not his feeding tube. We have the access point while here at the hospital we might as well use it.

After a very, very, rough night last night the poops this morning was a welcomed sight. He fell asleep in the early afternoon and slept better than he has in at least 4 days. He looked calm and comfortable which has us all very excited.

Karin's turn to spend the night with Liam and I will hold down the fort at home. The cats have gotten very ornery lately without any human contact and so I'll try to pet them before I crash into bed. Very little sleep last night should keep me tired enough to fight off worry induced insomnia.

Hope everyone had a better weekend than we did.

Night all.

Hospital Stay # 4 Day 2

Day two. We continue to be stalled in 'wait & see' mode. While new x-rays and bloodwork show no changes the newest theory is that this could be a virus. We will continue to watch for any signs of progress i.e. a shitty diaper.

I am having a sleep-over with the little man here at the hospital while Karin goes home to try and get some sleep for the night. Good luck to her. It was my turn at home last night and I hated it. Its just a quiet empty building without Liam and the noise of his ventilator in it. I was anxious and uneasy all night long. I expect Karin to have the same problem. I already warned her.

Liam is finally asleep after having a rough evening and so I am going to try and get some shut eye.

Night all

P.S. The Law & Order episode tally is lower than I expected but still probably higher than you think.

Friday, January 29, 2010

Like riding a torturous bike.

It may be missing a seat and hurt like hell but you never forget how to ride.

Liam is back in the hospital.

He will be fine and although we pushed for it hard we are not admitted into the ICU. Unfortunately, we are setting up camp on the 4th floor. He hasn't pooped in three days and his full belly is affecting his breathing but more importantly we are unable to give him his meds by I.V. at home and so a short stay here at Hasbro Children's Hospital was necessary.

It amazes me how quickly we all adapt to our roles when we get back into 'hospital mode'. The little things we've learned that come back so quickly. The parking spot in the garage that no one knows about and the secret that going through the RIH ER will get you into this hospital quicker. The subtle wrist flick to show the security guard the bracelet that says 'visiting hours don't apply to me' even with your arms full of stuff. That certain elevators shut down at night and on the weekend. That it is always, always a better idea to get your dinner somewhere else instead of getting a tray of the hospital food. Its like we never left. We know how to survive this.

It came on quickly, as it always does. He was fine until yesterday afternoon. After tolerating his 3:00pm feed Liam started showing signs that his belly hurt. He was cranky and irritable and didn't want to be touched by anyone. He didn't even take his 6:00pm feed and by the time he needed his 8:00pm round of meds he was distended and angry. If he was awake he was crying; and Liam doesn't cry.

We kept a close eye on him overnight with the help of our night nurse. He didn't seem any better in the morning and by 7:30am it was apparent that we would be heading to the hospital for an x-ray at least. 8am is a perfect time to go to the emergency room. No line at check in and no wait to be seen. Walking in with your baby on a ventilator usually lets us skip to the front anyway, but today we didn't even need to.

X-rays are not showing anything serious and there is no reason to get surgery involved yet. The kid is just full of shit. For today the plan is to give his stomach a rest and let him get his meds and nutrition through his IV. Tomorrow we'll try something more aggressive. We've been weaning him off of a particular medicine that helps with his motility and this is probably just his body showing us that he would prefer it if we didn't do that. Once we get what is backed up in there out, we can simply start up the med again to keep him regular.

Karin will be spending the night here with him tonight and its my turn tomorrow. Liam is riding out this hospital stay the way he rides them all out. By sleeping through it. He hasn't woken up much today and I don't expect much activity out of him tonight. His mom will be with him to keep him comfortable and I'll be at home tossing and turning in bed and feeling guilty that I'm not here even though only one of us are allowed to sleep in the room. (not counting Liam of course)

That's where we're at. Just passing time while Liam gets better. There are a limited number of channels on the tv in his room and yet I am always able to find some flavor of Law & Order to watch. Guess how many you think we'll see and I'll post the tally on Monday. Have a good weekend everybody and pray that my little guy poops.

Tuesday, January 26, 2010

What happened to me this afternoon with a couple of new pictures

"Its the whole neighborhood right? I mean... you guys are working on it?" The rain was coming down in buckets while I stood next to the pickup truck of the power company supervisor. "My son inside is on a ventilator and we have about 8 hours of battery but after that we'll have to go to the hospital unless you can get the power back on soon." I was glad that I had stepped onto the porch at just the right time to flag down this guy. The power had been out for about a half hour at this point.

"Looks like a fuse blew on the pole here." He said pointing across the street from my house at the same time a large cherry picker rumbled up to the pole. "He's gonna re-fuse it now and you should be all set." He seemed to be annoyed with my questions but I didn't care.

"Well, as long as it doesn't take 8 hours, I really don't want to spend time in the hospital because of a bit of rain and wind." We actually had 12 - 16 hours of battery life but he didn't need to know that. The old man assured me it would only take a few minutes and I ran inside to get out of the rain. Liam was resting in his special tomato and never in any danger but not having anywhere to plug in his equipment was stressing me out.

I watched the tech jump into his basket and put new fuses into the transformer on the power line and the lights were on in a flash. I hooked Liam back into the main power and got the battery recharging just in case we'd need it again. The trucks drove away and Karin and I got Liam ready for his visitors. Within a few minutes the whole gang was here. His physical therapist, his occupational therapist, the services coordinator from Liam's early intervention program and a nurse from the same program all got comfy around Liam on the floor and we started his exercises and talk about any changes needed for his care. I am usually at work when PT is here and so I was excited to work with his therapist to make sure the stretches that I work with Liam are the right moves. While normally we meet with only one or two of them at a time today was just a meeting to ensure that everyone is on the same page.

Starting at his toes and working our way up with stretches, we barely made it to his knees when the power went out again. We hooked Liam back up to his battery and put an HME into his circuit. The HME acts as a nose, humidifying and warming the air pumped through his circuit while his humidifier and heater are without power. Nothing that we could do would change the power problem so we proceeded with Liam's work. I'm so proud of all that he's accomplished. His flexibility and muscle control have improved so much since we started meeting with physical therapy. Today he was active and eager to participate. He recognized himself in the mirror and was quite enamored with what he saw. That kid of mine is amazing.




When your child has the kind of medical needs that Liam does your life is filled with contingency plans. Most of them end with "and if that doesn't work, just go to the emergency room." Its not an option I like to think about. Simply walking in the door will more than likely leave us stuck there for a few days no matter the reason and going there for a non-health related reason would really piss me off. As well as probably pissing off my shitty insurance company. Yes we could go to my parents' house with all of our portable equipment for a while and we would, long before we would go back to the hospital, but that doesn't make it any less stressful. The waiting. Which would come first? Our contingency plan or the repair to the power lines? It made me miss the days of worrying only about the food in the fridge when the power went out.

It was only a few minutes before the supervisor from the power company pulled up and parked in front of the house. We are on a registry with the state Department of Health and with the power company for people on life support equipment but I'm sure that it was because I flagged him down earlier that he stopped by and not some sort of protocol. Either way it was much appreciated. He let me know what was going on, and that a second truck was needed for the repairs down the road. It would be almost an hour and a half before the work would be completed. It didn't take nearly that long but at least I was prepared for it. I was useless for the remainder of the appointment as my attention could not by taken away from the two crews of guys working to restore my power. The rain and wind made what is already a dangerous job look even more terrifying.

The power was back on again in half the time we thought it would take. The trucks took off and all of our visitors finished up their paperwork and left in almost the same order they arrived. All of the sudden Karin, Liam and I were home alone and all was well. Liam, tuckered out from his workout, lay asleep on a quilt on the floor. Karin and I settled in on the couch for a relaxing cup of coffee and something to watch on TV.

It was an eventful afternoon but we are none the worse for wear. As I said I couldn't be prouder of Liam for all of the progress he's made and his willingness to work hard for us during his workout. 9 months in a hospital bed and his syndrome have left his muscle tone a bit weak for his age but he remains undeterred and is still getting stronger by the day. Go Liam!





Its back to work tomorrow for me and Karin has plans throughout the day with a very, very close friend who she doesn't get to see very often. It will be her first meeting of Liam and it is a very big deal. I'm sorry that I'm going to miss it. Have a good night all. There are a few pictures since I haven't posted any in a while. The one of his lion hat is a few weeks old but the other was taken during the power outage.

Night all.

Sunday, January 24, 2010

Cleaning up some bookmarks.

Kurt Vonnegut Motivational Posters. It took some doing for me to decide on which poster I wanted to use for the link. I decided on this one because I love the photo. Little gems of wisdom from my favorite writer of all time. Ting-a-ling.

*****
Financial Times has a fascinating article up about stray dogs across Moscow that are able to use the mass transit system.
They also acted differently. Every so often, you would see one waiting on a metro platform. When the train pulled up, the dog would step in, scramble up to lie on a seat or sit on the floor if the carriage was crowded, and then exit a few stops later. There is even a website dedicated to the metro stray (www.metrodog.ru) on which passengers post photos and video clips taken with their mobile phones, documenting the ­savviest of the pack using the public transport system like any other Muscovite.


****
It was of consequence, I should think; verily, it tied the room together

What if Shakespeare wrote The Big Lebowski? This has been floating around the Internet for a while and I think I remember reading somewhere that a small theater company in NY is going to stage it this spring. Funny stuff though I am not sure it stays consistently in Iambic Pentameter. Then again, I could be wrong on that. Shakespeare has never been my strong suit.

****

That's all I've got. Funny, I thought I had more links to post but can't find them in my reader or my bookmarks. Oh well. I should be writing my own content anyway right? In home news there really isn't any, and, as has been the case since Liam was born, no news is good news. Liam has been having tons of fun with his mommy while his daddy works all weekend. Some progress has been made on the printer project and while I did take this morning off, Karin and I have been going to the gym nearly every day.

Its 3am now and Liam is actually sleeping. Karin is upstairs getting the rest she needs (and deserves) while I hold down the fort. Ventilator has been double checked, feeding pump has enough formula to make it through the night and some old Law & Order episode just started on cable. Good night all, time for me to stretch out on the couch next to Liam's crib and try to sleep.

Thursday, January 21, 2010

A day off for the ages folks. Both fun and productive which is a good combination since its usually one or the other. Or neither.

Anyway, the day started with Karin and I getting to sleep late. The new nurse impressed us enough yesterday that we felt confident enough we didn't need to be hovering over her today. Karin came back to bed after greeting her and we got a few restful hours. Liam finally fell back asleep for the nurse around 8:30am after being awake most of the night and we new he'd be done for until the afternoon. After leisurely making breakfast and checking emails Karin and I took advantage of our nursing situation and left the house together.

Let me say that again, really let it wash over you this time. Karin and I were able to leave the house together and spend a few hours out there in the world.

We went to the gym and worked out together before going out to lunch. It was fun and calming and we both needed it.

After lunch I took the christmas lights off of the house and attempted to clean the leaves from the yard that I wasn't able to get before the first snow. That's when I realized I didn't have a rake, only a leaf blower, and even though the snow is gone most of the leaves are still frozen to the ground. "Mission leaf-clean-up" was quickly abandoned in favor of "Mission cup-of-coffee-on-the-couch". A mission that I was well suited for and accomplished with relish.

Already one of my more productive days, I wasn't done yet. At about 3pm my father came over and we got to work on finishing up some shelving units we built for my basement. There is still some unpacking work to be done down there but I'm better prepared for it now. Hey, give us time, we only moved in 8 months ago! Dad finished up our last project and I organized a spot for our next.

My father has given me his two Epson 3000 Color Printers. Fickle machines they are, one will be used for parts. A beast of a printer, it needs some cleaning but I can't wait to get it up and running. I feel like Gutenberg and I'm ready to start my own print shop. Producing my own prints has already gotten me excited about photography again. I needed a place to put my new equipment and so my dad and I built another shelving unit for it and in the process put together a small office space for it in the basement. I can't wait to get started.

My mom came by as we were finishing up and my parents got to spend some time with a decidedly sleepy little boy. The day was capped with an excellent shepherd's pie made by The Wife and watching TV while holding my boy who of course woke up ready to play at about 10:30 at night. I'm beginning to think that we have spawned a vampire. Not a sparkly girly Twilight vampire but a badass tough guy vampire like in Lost Boys. I'm on team Liam.

Well that's that. Karin is upstairs getting ready for bed. Liam is being read to by his favorite home nurse and I am boring you all with lame stories about shelves and leaves. Have a good weekend folks. Oh, and for the "pics or it didn't happen" crowd, if you thought reading about it was boring try this on for size...

Now who's got something that needs printing?

Wednesday, January 20, 2010

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.