Nursing

A quick visit.

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It always happens so damn fast. After an amazing Saturday afternoon which included a visit from New Jersey by Liam’s grandparents, dinner out at one of Liam’s favorite restaurants (of the two he’s visited), and a visit to one of our favorite places in all the world, the Roger Williams Park Zoo. It was Sunday that started with Liam having a weird shivering motion we’d never seen before and a rising temperature. Some Tylenol and Motrin, and a quick call to his pulmonologist’s nurse practitioner just to give her a head’s up, things seemed to resolve using Liam’s sick plan (The sick plan is a series of ventilator changes and nebulizer treatments given at our preditermined increase when Liam isn’t feeling well, Waiting until an illness arrives is the wrong time to come up with a plan for how to treat it with a kid on a ventilator.). Reaching a high of only 101.3 in the afternoon, by the time we got Liam to bed at 9:30pm he was sitting at 98.8 and we thought we were out of the woods.

It was 11:18pm when we went in to check on Liam. Now, with his temperature rising, the shivering motion that resolved so quickly in the morning was present and stronger. His rate of breathing was about three times what it should be. By a quarter to 12am we were calling 911.

By my count 5 of the 6 EMT’s and firemen  who responded have been here before Sunday. The holdout looking barely old enough to drive. The blood rushing from his face as he walked in and took in the tubes and chords across a little boy’s bedroom. He watched as we changed Liam’s trach and looked for a chest rise and listened through our own stethescope, listening to see how well he was moving air just in case the respiratory problems were from an occluded trach. I would have laughed at him if I wasn’t busy rushing out of the room to get the Liam’s suction rig ready for an ambulance ride and making sure the med list saved in my phone was current, while Liam Karin got Liam, his ventilator, and his oxygen tank ready for his transfer to the stretcher.

It’s been a few years since we’ve had a sick visit to the children’s hospital. We’re out of practice. But back into our roles we all fell pretty easily. Put onto the Servo Ventilator ( a huge hospital-only piece of equipment) in the ER and for it only taking three tries in three different veins on three different parts of his body to get an IV access (it usually takes many more), Liam almost immediately looked to be breathing better. Against the doctor’s wishes (“that’s not the priority right now!” she yelled at the nurse) the impressive ER trauma room nurse caring for Liam, was able to get the blood needed for labs before taping the line onto Liam’s bicep. That line would miraculously stay flowing and give them a place to administer IV antibiotics, until we left yesterday afternoon, and while she tried to get it while getting yelled at by a Dr. I cheered her on the whole time as if she knew that Liam being such a hard stick, if she didn’t get the blood from a vein then, it would probably take an OR procedure later to do so and not blow the line for access.

By Monday afternoon Liam actually looked pretty comfortable. Sleepy for sure but his fever controlled again by tylenol and motrin, the new Nurse Practioner of the PICU who we had not yet met, seemed more than a little surprised and a bit put out that even though he was back on his home vent and his numbers seemed to be ok, I refused to let her ask Liam’s pulmonolgist and the PICU Attending Dr. to let us go home that afternoon.

“Parents don’t usually ask to stay here another day sir, his numbers have been very good.” It was clear her plan was to get us out of there as soon as possible. Karin and I gave her the reasons why we flat out refused to go.

“Even though he looks fine now, we haven’t gotten any answers as to what happened to cause him to get here. We made subtle changes to his vent settings only a few hours ago!  We don’t know yet if he’s going to tolerate them while he’s awake and breathing normally?! Lab cultures haven’t even come back yet, we don’t even know what his high white blood cell count in the ER was fighting off. No. We have gone home and then had to turn around and be re-admitted before, we aren’t doing that again. No. we are staying one more night to see if he really is doing better.” I said.

I’d be lying if I didn’t get just a bit of satisfaction when she had to come back only a few hours later and explain that his blood cultures grew out strep pneumo probably causing the fever and the pneumonio symptoms in his difficulty breathing the night before, and that while we wait to see what antibiotics this bug is most sensitive to, if we had gone home when she offered, she would have then had to call us back to be re-admitted through the ER for IV antibiotics. We were right. It was a good thing we hadn’t left.

The wait was kind of brutal. Liam really was doing much better. But that was because of the Cephtriaxone. If there were an oral ( or a non-IV administered version) of that antibiotic we would have been home on Tuesday. Instead, we were forced to wait until the lab got true drug sensitivities of this particular strain. Apparently different strep bugs all over the country are more or less sensitive to different antibiotics.

“Why haven’t we just tried good ol’ penicillin? We used to always treat strep with Penicillin.”  the attending Doc relayed at morning rounds on Tuesday. Having known Liam most of his life though (and spending one entire night a few years ago never leaving his room as she ruled out whether or not he had had a heart attack due to the sceptic shock just ravashing his blood pressure. Don’t worry. He didn’t) she added, “well I guess there’s no need to get cavalier about it though, this is Liam. Better wait on the Lab. One more day.”

By Wednesday morning’s bedside rounds, the lab sensitivities were in… We knew if we had an oral version of the antibiotics allowing us to bring Liam home.

It was penicillin.

Good Ol’ Penicillin.

It was time to go home.

We are all at home now, but It’s been a long week. A week of sleeplessness and worry. But also a week of bragging about the boy. Bragging and visiting with people who have spent time with Liam at his worst. People who have been there to help save Liam’s life multiple times, but don’t get to see him use his ipad. People that care for him for weeks post surgery but not for the weeks post Santa visit.

Like the proverbial pebble thrown into a lake, Liam has touched so many lives. Part of being Liam’s parent is knowing that every now and then Liam will decide it is time to teach a med school class to a rotation of new residents. To open the eyes of a brand new EMT.  To reach out to a nurse he may have taught something to in the past (one of his nurses this stay learned how to change a trach on him  a few years ago, the last time he was admitted, and under our supervision and permission.), or to teach a Nurse Practioner that maybe listening to the patient (or his parents) is just as important if not more important than what the numbers say.

We’re all at home now, and it has been a long week. A week of sleeplessness and worry. But I did so much bragging about Liam, and he visited with, so many people who have known him for as long as he has been alive, people who have helped him through his very worst times.On top of that, Liam met new friends. Friends who will go out into the world feeling the positive energy of meeting a charming boy like Liam and bringing that into their careers as nurses, and doctors and respiratory therapists.

We’re all at home now, and it’s been a long week. A week of sleeplessness and worry.

But on some weird level, and this is only because aside from the few hours in the ER Liam was basically comfortable the whole time,  I can’t say it hasn’t been a little bit worthwhile.

*****

Night Shift

I’m generally not the guy to post news, be it good or bad, as it happens. It took me a week to post about taking Liam onto the field at Fenway before his first game there, a truly life changing moment, so the timing of this post alone should explain its importance.

In only minutes Liam’s new night nurse will arrive for her first overnight shift. She has trained here with Liam and his daytime nurse for 30 hours and so, she is comfortable with us. She seems competent and confident, she is gentle and sweet with Liam and even talks to him (which you would think wouldn’t make her special when it comes to nurses but we’ve found that not to be the case). She seems to be happy to work nights and has given no indication that this is just a placeholder job until something better comes along (also a common theme found in overnight nursing). In other words, she was sent from above.

September 4th. The last time I went to bed before 4am. The last time Karin was able to sleep past 4am. The last time we slept in the same room. In only minutes it will come to an end and we can take a deep breathe and get some rest. So it’s going to be pretty funny when neither of us get any sleep at all. It will take a while until we get used to trusting someone new to take care of Liam without either one of us. Even if it is overnight.

Get some sleep out there folks. I know we are going to try.

Uh, we had a slight weapons malfunction, but uh… everything’s perfectly all right now. We’re fine. We’re all fine here now, thank you. How are you?

This isn’t new behavior. In fact it happens all the time, I even posted a fuzzy cell phone picture of the first time it ever happened here. It still cracks me up every single time. Especially when we see Liam’s heartrate drop by like 10bpm as Calvin settles in and starts purring, showing just how calming an effect they have on each other.

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Based on the a slight tone of worry in more than one of the comments, emails, and facebook messages sent after a few recent posts I fear that an explaination may be in order.

We’re fine with our home nursing. Thank you for your concern but we are not struggling or breaking down, we’re just plodding along and putting one good day after another.

The nurse in question from my last post was never going to be Liam’s nurse. She was only here to be trained and tested before going on to her assigned case (making her behavior even more puzzling since we are under no obligation to allow anyone to use our son as a a teaching tool. We do it to help the agency and other families who need nurses.) We didn’t lose anything from her incompetence other than our enthusiasm to help any more new nurses in the near future. We are not heartbroken or let down. I thank you but we’re doing just fine.

A few weeks ago I posted a bit about our schedule when Liam has a night nurse as opposed to our schedule when he does not. Again It wasn’t a complaint about our lack of nursing it was merely me documenting here for anyone curious what our “normal” night looks like. Would it be nice to have a nurse come by every single night so that my wife and I could spend every night getting a nice long chunk of sleep together? Sure, so would a million dollars. That’d make life easier too. But we’re fine, thank you for asking.

As I type this, Karin has just retired to the bedroom for the night. Instead of coming downstairs at 4am to switch places with me down here, she will sleep undisturbed until whenever she decides to come downstairs tomorrow. Were it not for our crazy schedule I wouldn’t be able to give her that Mother’s Day gift.

I like that I can give her that Mother’s Day gift. Truth be told, I should do it more often. She deserves it.

Karin and I try as hard as we can to straddle a line with Liam’s nursing needs. Whether we like it or not it is necessary and so we use what we need but we try to do so by staffing only just enough hours to prevent the insurance company from reducing the number of hours they’ve approved, but not enough hours to make this home feel like a clinic. There aren’t any patients living here. Just a little boy, his parents and a couple of cats.

Using a minimum amount of nursing is important to us.

Parenting was a spectator sport for us for the first 9 months of Liam’s life. We endure 9 months of watching nurses take care of our baby. We had no choice in the matter then. We do have that choice at home.

So we choose to not have any nursing help on weekends. (unless we schedule a special nursing shift for a date night. It does occasionally happen.) We also choose to keep Tuesdays as a nursing free day. A part of the routine since the first day he ever came home it’s called “Mommy & Liam Tuesday”. Karin relishes her one day a week alone with her boy, while I toil away at the old salt mine, and I am tremendously jealous of both of them for it. We choose to not have too many nights covered for us to sleep because it’s our responsibility as Liam’s parents to care for Liam not some nursing company. When Liam wakes in the middle of the night due to a nightmare or a seizure (but I repeat myself) we want to be ones who comfort him, not someone who get’s to call in sick from being there for him, or is only there to collect a paycheck*.  Show me a parent who doesn’t make the hard choices and sacrifices for the benefit of their child and I will show you a parent who is doing it wrong.

Thank you for your concern. We all appreciate it and hope you continue to share your comments, messages, and emails with us but we are doing just fine with our nursing schedule right now. We’ll survive.

We always do.

We’re fine. How are you?

I’ll talk to you later.

*P.S. Now that I’m thinking about it and so that I don’t have to write another explaination post, let me also say this. Like anything else, there are exceptions to every rule. The Olson family has also been fortunate enough to work with a few nurses who while they are/were still paid to be here and able to call in sick, have also shown that Liam’s care and well being were/are very important to them. It should come as no surprise that those are the same nurses that Liam has grown more than a little fond of as well. They know who they are and also how important they are and always will be to us.

P.P.S. Oh, and expect a post this week about a crazy story involving a billing snafu  with our nursing company. But knowthis — that one has nothing to do with our nursing help situation and more to do with the interagency bureaucracies, bullshit, and red tape that can effect the families of children with special needs.  In the end (I hope) the nursing company was the one that stepped up and did something about it so for now, yay them anyway.