We’ve never taken Liam home from the hospital while he was still “sick”. 40 day stays seldom end with discharge if there is still the hint of infection, so we were slightly surprised when the word to break free came on Thursday afternoon. Not that we complained or did anything to stop it mind you, but slightly surprised nonetheless. The attending doc who discharged us was right when she commented that once the seizure that brought us into the ER had been stabilized the remaining symptoms were not enough to keep us in the PICU. Since heading upstairs to the non-ICU floors is not really an option for Liam it was only logical to send us home. I believe her direct quote was actually “there’s nothing here that you guys couldn’t handle.” She’s gotten to know us pretty well over the years.

Still, I’d be lying if I didn’t say that these last 24 hours hadn’t been tinted with more than the usual amounts of stress and worry. Barely 30 hours after getting home Karin and I still find ourselves waiting for the other shoe to drop, for one of these mild symptoms to send us bouncing back into the PICU just like we have so many times after a hospital stay.

******

I blog more when Liam is in the hospital. It’s a great way to let family and friends know what’s going on but it also gives me something to talk about. Something in the present because lately I’ve been focusing more on our past.

A few months ago I told you about a presentation I was writing about our story. I’m happy to report that it went well. Very well in fact and I have been asked to do another. Tuesday I will be the keynote speaker for the Women & Infants Hospital Schwartz Center Rounds. (You can read more about Schwartz Center Rounds here). After speaking for 15-20 minutes (no small feat in itself, that first presentation I went on and on for almost 45!) Karin and Liam and I, with the aide of a facilitator, will answer questions as part of a panel discussion for an audience of doctors and nurses, who will receive continuing education credits, along with other caregivers and hospital staff.

It’s kind of a big deal.

It’s why I have been focusing so much on our past. On Liam’s time in the NiCU. On the impact that nurses and case managers, and therapists have had on our family and its development.

It’s why along with meditations on our past there have arisen very new and exciting thoughts about our future. About my future. It may have taken me 35 years but I think I may have finally figured out what I want to be when I grow up and that it has something to do with writing and speaking about patient advocacy.

And it’s why I shouldn’t be blogging any of this right now. It’s all time that I should be working on my speech.

Thank you all for the thoughts, prayers, and well wishes this week when you heard that Liam had been hospitalized. Getting all of those tweets and comments and emails is another reason why I blog more when Liam is in the hospital. It’s nice to know there are so many people out there who care about us. It means more than you all know.

Liam is in the hospital again. He is fighting some sort of bug off and, as is often the case with Liam, the first way he decided to show us he was sick was to have an abrupt and severe increase in seizure activity. So much so in fact that after intervention with three doses of one emergency med and a single dose of another, we were still unable to break a seizure that hit at about 4am. Long story short, the ambulance pulled away from our house carrying Liam and his mom on to the safety of the hospital at about 5am.

The seizures are broken now, and although his heart rate is still slightly elevated since there is some sort of bacteria in him, he looks and sounds great right now. Great enough that people keep walking around saying the H word! Right in front of Liam where he can hear them too! Karin and I are too seasoned to think that we will be leaving here in less than 24 hours but you never know, Liam is always surprising us so we’ll see.

Hope you’re all having a great Wednesday. Do me a favor and get some sleep. It’s times like these that remind me how important that it is.

I didn’t even hear the bang. Or if I did I just thought it was the cats knocking something over or jumping off a table so I don’t even know how long she was sitting there. The drunk neighbor who missed the road by about oh, 25 feet and instead decided to drive right into my front yard.

Everyone is fine. Well, everyone here is fine, your guess is as good as mine on her condition right now. She wasn’t looking very good when the cops put the cuffs on her and tucked her into the back of a squad car. Not injured from the crash at all, she couldn’t have been going that fast, I would have to say though that she’s probably had better nights.

The tow truck was quick and by 4:15am all the excitement was over, leaving a house full of wide awake Olsons, which wouldn’t have bothered me in the least had it not been my weekend to work.

Had she been heading a few feet over in either direction she would have slammed into Liam’s van on one side or torn Liam’s ramp clear off the house on the other. It could have been so much worse. Fixing a fence post and possibly losing one of my rose of sharon plants is actually the best case scenario. Well, aside from not having my property driven into by a drunk driver of course.

So anyway, that happened. It’s always an adventure around here I tell you. Now I have to go finish start writing another speech. I’ll tell you all about why soon.

We go for walks now. All three of us. Everyday.

For the past 7 years I have had to work until 8pm at the earliest. There wasn’t any way for me to go out for a walk around the neighborhood in the sunshine. Then in November I got a promotion and was able to get home by 6 almost every night. A welcome change but being November it would still be another 5 months before I would get to enjoy the feeling of leaving work able to enjoy even a little bit of sun.

I used to come home from work with barely enough time to eat dinner before Liam would fall asleep. Now I come home with hours and hours to play with before bed time. We’ve got a new routine now.

We go for walks.

All three of us.

Everyday.

We got new phones. Our old phones started acting wonky enough that it was becoming imperative, so we splurged. For what it’s worth, we went with iphones and that decision for me was totally based solely on the quality of the camera. I’m glad that I did. Not only for the quality of the camera itself but the ease with which I can edit those photos in my phone.

They arrived just in time for Liam’s hospital stay which ended about an hour and a half ago. It may sound silly but playing with a new gadget like this is exactly the right kind of activity to pass the time by Liam’s bedside.

The hospital stay was planned. A routine bronchoscopy brought us in but we figured why not use the opportunity to take care of a few other things so Karin coordinated a neuro consult to adjust his seizure meds and an ultrasound for hematology to check on that thrombosis from last year piggybacked on top of the vent assessment that was keeping us there for 24 hours anyway.

The blood clot is completely gone, we’ve got a new schedule and a slight weight adjustment to his seizure meds, and while we didn’t need to make any vent changes (we did that about 6 weeks ago) we were able to confirm some fantastic blood gases overnight. In that time I played with my new phone and got comfortable enough with it to be able to shoot, edit, and post photos right here onto the old blog.

So, you know, productive trip.

Whatever.

If this kid of mine, who was “never supposed to be able to walk” can suit up in his walker at school and walk 67 feet (yes we measured. 101 8 inch tiles) down the hallway what valid reason can I possibly come up with to not find the time, motivation, or energy to brag blog about it here to all of you?

There’s no excuse.

I’ll try and do better.

I’m writing a speech about our story. Wait, let me start at the beginning, after writing an essay to apply and being interviewed by a recruitment committee I was asked in December to join the Women & Infants Hospital – Hospital Wide Advisory Council for Patient and Family Centered Care. You may recognize the hospital name since it is the hospital where I am employed but more importantly and the focus of my application essay is that it is the hospital where Liam was born and spent his first 153 days in the NICU. This is an oppurtunity to work with the administration and faculty as well as former patients or their family members to craft policy to support patients and their families and I could not be more excited about it. I am truly humbled to have even been asked.

Last month after hearing one of the council’s founding members (It was founded in 2007) give her own patient story, the call for volunteers to give their own stories went out and me all ginned up on new-found self-confidence (thanks a lot fatherhood, and supportive blog readers) I answered the call. So next Thursday I am on the agenda. After opening remarks by a senior administrator of the hospital I will give my first ever Powerpoint presentation. I get to tell Liam’s story.

I get to tell our story.

I’m not nervous about it since I have a pretty good grasp of the material. If anything, I’m nervous about having too much material and going on and on and on. Believe me, you get me going about my family or about hospitals and boy can I ramble.

With the meeting now about 9 days away I’ve really been trying to think about Liam’s time in the NICU and what I could take away from it that would be pertinent to a Family Centered Care Council. What better time than this morning then to receive the most wonderful email from the hospital’s patient liaison. Apparently she had found something I would like on her camera’s memory card. A whole bunch of photos she took on a very special day.

She was thoughtful enough to take pictures of us on the day that Liam came home from the hospital. Pictures of us fighting our way through the crowd of my co-workers and boss and even a hospital vice-president wishing us luck, of my parents swarming us before we could come anywhere close to the door, of the host at the podium and how excited she was to be the one to discharge Liam, and of my reaction to the day. That one is my favorite photo given that in my recollection that whole day was a blur anyway.

Look how far we’ve come.

She didn’t know I was writing my speech at the time, and she had no idea how valuable they would be to my mindset, and recollection, and to my Powerpoint presentation, she just sent them because she found them, with a note reading “Sorry it’s been so long in coming…”

There’s no apology necessary Evelynn. They came right when they needed to.

Anyway, I’m falling back into that trap where blog posts need to encompass some grand idea or story and so I’m trying to head it off at the pass. Parenting Liam while exciting at times isn’t all big revelations and medical emergencies. Most of the time it’s just getting through the day to day like anybody else.

Like going to the dentist.

Liam handled it better than I did but in the end the dentist’s final words were “whatever you’re doing, just keep right on doing that because everything in there looks exactly as it should.” so, we’ll take it.

Due to Liam’s annual month-long hospital stays and other illnesses, then throw in a half year on blood thinners, and this was Liam’s first ever dental appointment. Thanks to prematurity, not eating food by mouth and breathing not by mouth but by ventilator (causes the gums to become more fibrous making it more difficult for teeth to break through) the delay was not a problem because Liam, in essence, still has the mouth of a two year old. Which is why at this very moment of 2:12AM instead of sleeping peacefully, he is fitfully tossing and turning in the pain of yet even more teething.

There isn’t enough Children’s Motrin in the state, the teething just doesn’t stop around here. Ever.

Might be time to switch to a bit of Whisky on the gums. . .

and time to try something new for Liam’s teething pain also.

G’night.

The ride was uneventful. We took it slow and took the route that we knew had the least amount of hills. “The Plan”, which we would spend the next 13 hours amending on a minute-to-minute basis, was at this point just get to my hospital. The hospital I work in. Once there, we would be able to find a power outlet and some warmth in my office at least, and I would have a few hours at least to try to find an oxygen tank. While I know pretty much everyone in our little hospital, including all of the respiratory therapists, you really can’t just ask for bottled oxygen if you’re not a patient. They don’t just give the stuff away.

Wait, wait, wait. I think I forgot to mention something. You see, this all happened on a weekend. My weekend. My weekend to work. Our three person management team rotates to work every third weekend, and so regardless of how things had worked out with the power at my house during the storm I was going to be driving to the hospital anyway. I had hoped I would be leaving Karin and Liam in a warm and well-lit house to do it but you can’t always get what you want. That day, we just had to try to get what we needed.

I dropped Liam and Karin off at the front door so that they could get their temporary visitor badges at security while I moved the car to the staff parking lot. They were met with enthusiasm and smiles by people who remember his own hospital stay there 4 years ago as if it were the day before. My own boss met us and had arranged with the NICU department manager to set us up in an unoccupied family room for a while. For a few hours at least we had a place that Liam could lay down. Only minutes after getting Liam comfortable it was time for me to put on my other hat and go manage the department, so I did to Karin what I had been doing to her the whole night long every time I went outside to shovel snow, I left her and Liam alone. Over and over again.

For the next 6 hours Karin and Liam stayed warm and dry in that family room. Watching the local news coverage continue to plead with people to stay in their homes despite the now bright sunshine since roads all over the state were still impassable. It was obvious that this oasis of sorts was only a temporary solution to a greater problem as the reports now were of the possibility that our power would not be restored for days. A new plan had to be made as we tried to figure out where we would be able to sleep for the night.

Trying to coordinate with family and friends to decide on shelter for my family while at the same time trying to staff and manage the food and nutrition department of the hospital I was near breaking at around 4pm. We’ve been through some hairy medical moments and situations but this was the most frazzled I can ever remember being. I closed my office door. I put my head in my hands and I cried.

The temporary shelter became even more so when a family of 6 who had every right (if not more right) to that family room all came in. The family of a patient in the unit at the time it was us intruding on them and not the other way around, but it was their coughing and sneezing that made co-existing there impossible. Last august we took a healthy Liam into a hospital to adjust his diet of all things and when he caught a bug we didn’t end up leaving for 37 days. I’ll be damned if I was going to let something like that happen again. Karin called my office to let me know what was going on and had Liam packed into his chair and downstairs back in my office before the words could get out of my mouth.

Karin was at her breaking point too by then. With tears in both of our eyes, I tucked our little family into my department’s bookkeeper’s office which I knew wouldn’t be used by anyone until at least monday. Fold up canvas cots were readily available for staff all over the hospital since so many had been snowed in and I grabbed one of them for Liam. It was less than ideal and not nearly the solution we were looking for. It really was time to throw in the towel. We knew at that moment what we had to do.

“Hi. This is our son Liam he is a frequent flyer here and as you can see he is on a ventilator. He is not in distress, he is not sick, he does not have any symptoms of anything and does not need treatment but we have no power and no heat and more than anything now we need an inline humidifier because after about 16 hours  on his HME we are going to dry out all of his lung tissue on his portable equipment. He needs a half liter of oxygen and our portable tank is now empty. Is there any way we can be admitted for the night to keep him safe?” Karin has game when it comes to breaking down a situation for an ER nurse.

Whisked away and into an ER room we only had to repeat the story a few more times. Once to the nurse who was awesome, both at getting us whatever Liam needed and at telling us what we wanted to hear. Specifically that we weren’t being a burden or getting in anybody’s way of more deserving medical cases. I know when Liam is admitted long-term we jokingly refer to it as the Hasbro Hilton but it is The Hasbro Children’s Hospital and most certainly not a hotel.

Confident that Both Liam and Karin were at least somewhat comfortable I made my way back to work (about a block away) to finish out the shift and ensure staffing for the early morning responsibilities. With transportation around the city completely shut down there were plans to be made and contingencies to be set up.

I mentioned over-eager residents at the start of this post. They just can’t help themselves. If a patient is in a bed there must be something they need to do, and so only minutes after having our whole ordeal explained, including multiple mentions of his robust health and significant lack of symptoms of ANY KIND (!!!!!!!!) promptly ordered a sputum culture when she spied Karin wiping a little drool and snot from his face and mouth. Drool and snot are ever-present in our lives here and should alarm no one, most of all an MD, but despite Karin’s protests a few minutes later a CNA left the culture kit on the counter for the nurse to administer the test on her next visit to the room.

So Karin swiped it.

Knowing that simply the lack of the kit in the room could easily delay the test being sent off for hours and hours, Karin grabbed the jar and the applicator and catheter and threw them in her bag. Just the act of taking a sputum culture will without a shadow of a doubt keep us here at least 3-5 days while we await growth only to be positive for his colonization of Pseudomonas. (trach and vent people will know) Then we try and treat a gram-negative colonization and who the hell knows how long this hospital stay lasts? Before you know it, a month has gone by. Nuts to that, we’ll figure a way out of that no matter what it takes.

The ER doctor made her way back into the room and Karin explained everything I just put into that last paragraph. They agreed that she would stop ordering tests provided that nothing that Liam did seemed out of the ordinary. Crisis averted.

At about 9pm, and now going on 24 hours since the lights went out at home, I closed up shop at work and made my way back to the ER for the night. Trying my hardest to keep a smile on my face I had Karin take a picture of my message to our good friend Nemo for putting us in this position. Thanks Nemo! Here’s my salute to you.

Once I got there, the news that we were being admitted to the hospital onto the 5th floor was welcome news and an hour later we were moving all the things we carry onto the elevator to our new digs for the night. A big double room that had no other occupant at the time but also afforded us enough space for his wheelchair, a vent table and two recliners(!) it would do for the night, and in the morning we’d figure out the next step. Hopefully someone we knew nearby would have power and a clear enough road to get there.

Liam was now snug as a bug in a big boy hospital bed. His ventilator puffing away alongside him and his own fluffy blankets we had carried with us all day atop. He had handled this whole ordeal better than both Karin and I did. He handled the day better than I ever could have hoped he would. The kid’s a trooper I tell you.

The attending doctor on the floors just got it. She got it in a way that most docs don’t and after assuring us that we were probably the most worthy admission she had had all night, explained that her own treatment plan for Liam was to close the door behind her and not see any of us until the morning when she would help us by calling the power company to explain why my house needed power immediately. Knowing that a call like that when close to 200,000 people were without power would be fairly silly we thanked her anyway and said that just giving us this room for the night was more than enough. She made a joke on her way out of the room that she just knew that 10 minutes after she filled out all of her admission notes and paperwork we’d probably get word that the power was back on. Thinking it impossible we all had a good laugh with that.

It wasn’t exactly 10 minutes. More like 20 but when I got the grainy, blurry, and dark picture message from my father’s outdated flip phone I recognized what it was immediately.

WE HAD POWER!

Only about 6 blocks away, when my parent’s power came back my dad (literally) ran over to our house to check it out for us.

After hugging each other and smiling enough that if we had any left there probably would have been tears, I ran to the nurses station to catch the doctor. On another floor already the nurses could already tell why we needed her.

“Do I have to fill out discharge paperwork now?” Our assigned nurse asked half-joking and half annoyed that she would have to get all that paper work done this late at night.

“You have to do what you have to do but I am going to go get Liam’s van and we are getting out of here to go home!” I said with a smile.

That’s when Liam had had it. That’s when it all caught up with him. That’s when Liam decided that he was tired of the cold, and tired of his chair, and tired of his parents, and tired of being anywhere other than his bed or his couch. That’s when this kid of ours who has been through some of the most painful medical situations I have ever witnessed and done so without even shedding a tear, had his longest, loudest, and most severe toddler-temper-tantrum ever.  From the moment Karin pulled the blankets off of him in that hospital room until we got him inside our house and lay him down in his crib 45 minutes later Liam cried. Not from pain. Not from sickness. For the first time I saw my boy reach his breaking point on being over-tired, and overwhelmed by it all. Luckily for us he cried himself into exhaustion and by the time his twenty-minute nebulizer treatment was finished he had drifted into a calm and peaceful and most important -a comfortably warm, sleep.

Liam was overwhelmed, Karin was overwhelmed and I was most certainly overwhelmed, but we made it. We made it together just as we make it through everything else life throws at us.

It may not be pretty at times but we’ll always make it through. There we were, stressed out, drained, and unable to fully comprehend what we had been through until days later. 26 hours Hell but all we needed to get through it was each other.

And so it ended just as it had begun, with a sleeping boy, Karin and I huddled together on the couch, only on this night, I didn’t even have those delicious brownies around to comfort me.  With chocolate chips in them dammit!

*******

And that’s our story. There’s not much more to say than that. Like I said when I started this tale, I have been living in the shadow of Blizzard stories my whole life. Now I have my own to share. Man, my grandkids are going to get bored hearing this one over and over and over again.

Thanks again for hanging in there.

Liam’s Backpack
10 5ml syringes, 20 10ml syringes, 10 20ml syringes
All of Liam’s meds (not going to list them all but not knowing when we would make it home again we had to grab EVERYTHING)
Spare G-tube Mic-key button and extension.
2×2 fenestrated sponges.
4×4 fenestrated sponges.
Spare pulse oximeter probe
5 Feeding Pump bags
6 cans of formula
5 Facecloths for catching drool

My Backpack
Charging chord for suction rig
A/C plug for LTV ventilator
A/C charging cord for ventilator Lithium Battery
A/C charging cord for feeding pump
A/C charging cord for pulse oximeter
Additional Spare circuit for the ventilator
2 more cans of formula
1 cell phone charger
My kindle eReader
Karin’s kindle eReader

Miscellaneous Bag (one of those nylon reusable grocery store bags)
1 cell phone charger
4 changes of clothes for Liam
1 feeding pump
2 child sized blankets
5 onesies
2 sets of pajamas

In the Back of the Van
1 case of 24 cans of formula
1 case of 128 diapers
1 case of 100 suction catheters

From house to van. Van to hospital, Hospital to a different hospital. Ultimately to home. Aside from the clothes on our backs, this is everything we carried. In other words, we thought enough about how long we’d be away from home to pack up our kindles but apparently Karin and I never once thought about changing our own clothes, brushing our own teeth, dealing with our own needs. It was never very cozy at all, but at least Liam was warm.

********

Listen folks, I know that this blizzard is old news and as I type this a warm driving rain is trying its hardest to erase any evidence from my yard. With the whole thing happening almost two weeks ago, telling this story my way has become more about me (setting/reaching a goal, finishing what I start) than it has to do with you (reading what may ultimately be a boring conclusion to a mediocre story) I’m pretty sure I’ll finish it up in just one more part. Thanks for hanging in there.