I’m lucky enough to have a few friends at work who really do understand our situation, as much as anyone not living it really can, but for most co-workers and acquaintances my family life is hard to comprehend. Having a nurse come to your house and stay overnight can seem strange and unnecessary to people who have had little exposure to medical needs such as Liam’s. It’s hard to explain. When I’m talking about being a dad I focus on how fulfilling and rewarding and enjoyable being Liam’s father is. I truly am a lucky man. I try not to mention the pain in the butt payments we have to make for the privilege of sharing in Liam’s love. Because why would I? Why talk about how tired I may be after spending the last 8 weeks with only the opportunity for 4-6 hours of sleep per night? Weekday or weekend, workday or vacation day. 4am to between 8 and 10am. That’s my shift. Why mention that in those same 8 weeks Karin has only been afforded sleep during the 12am-4am shift, meaning we haven’t slept in the same bed in over two months? Why mention that we have had 6 total hours of nursing help in the last 8 days and have at least 4 more days to get through? To the people who don’t know us all that well I don’t want to seem like I’m complaining and I’m afraid that it may sound like we can’t take care of Liam by ourselves. The people close to us of course know better. Our doctors and nurses know better. Liam knows better and I’m sure would laugh at anyone who would think otherwise. But when mentioning our lack of nursing help I can’t help but notice the quizzical look on the faces of the people who just don’t get it.
For every minute spent boiling syringes, drawing up meds, maintaining pumps, monitors, humidifiers, and ventilator tubing; for every twenty-minute phone call to the insurance company, the medical equipment company, the early intervention specialist (of which there are four), and doctor ( of which there are too many) is another hour not spent holding Liam, reading to Liam, singing to Liam, or basically, in a word – parenting Liam. But all of those things need to be done. All of them, and yet only some of them can be done by anyone other than his mom or dad. And for those we can use a little help sometimes. Unfortunately, due to his medical equipment and complicated diagnosis Liam’s case requires what’s called “skilled nursing”. Not all nurses are trained in pediatrics, and not all pediatric nurses are trained for trached and vented patients. When a nurse moves on or doesn’t work out it takes a while to find another. Takes even longer to find one that might actually fit in with our needs and expectations.
We lost two nurses during the second week of December (hmmm, I wonder when blog posts started stalling? let me look at my old calendar ummm…. oh. What a coincidence!) One nurse left due to medical situation which is of course the fault of no one and one was due to the relocation of her military husband which is of course the fault of the US Air Force so I’m not complaining. One was expected and planned and one completely out of the blue, but ever since that week Karin and I have been in a lock-step, zombie-like adherence to our sleep deprived daily routine.
On days without appointments, days when I’m off from work, and the scarce time with our nurse (currently dealing with a medical condition himself) we are playing so much catch-up with our own basic upkeep, food, and chores that additional projects and improvements to the house or. . . ahem, . . the blog, seem less important than rest, television or a good book, and my boy with me on the couch. It’s where I get the recharge I need to make it through another day. Another week. Another month.
One of the nurses that we lost was our night nurse. She had been with us since the first week that Liam came home from the PICU. For three nights a week for a little over a year Karin and I were able to sleep for 8 hours and in the same bed. Amazing what those few nights a week did for us all now that they’re gone.
Though Karin and I are fully capable and very experienced at changing Liam’s trach (in both planned and emergency situations) I don’t like being the guy that Liam associates with that uncomfortable process. Let the person that comes and goes in shifts and gets paid to be here be the bad guy (or girl.) If daily rectal temps are what the doctor orders let Liam think it’s the nurse that’s the jerk. I’m not saying I can’t do these things, and I’m not saying I won’t do these things, I’m saying that some of Liam’s medical needs and therapies are uncomfortable and unpleasant, what parent is going to be thrilled about doing those things when they have to be routine? Believe me, when any of those same therapies are made more difficult or more painful due to illness or emergency it always has been and always will be a parent and not a nurse who holds Liam’s hand or squeezes him tight to get through it. (And yes, that even goes for when he needs to be held down for the really tough stuff in the hospital.)
Even as Liam sleeps there is care that needs attention. Between monitoring water and heat levels on the ventilator’s humidifier, or the monitoring of the placement of ventilator tubing and the trapping of
condensation, and the constant watch for signs of seizure activity, the care required leaves any caregiver only a small fraction of attention and focus for other tasks around the house. Hard to start any project involving harsh cleaning supplies or other messy handed tasks unless you know there is someone around to help if there’s a trach of feeding tube site issue to attend to. I’m sure Liam would survive without his trach for the time needed to wash hands or find gloves but it’s not pretty and why chance it if you can avoid it? Nurses help do just that. Nurses help to make it possible for Karin to focus on the phone call to order all of our monthly medical supplies or the bi-weekly insurance company call questioning the coverage of, well . . . everything. Nurses help Karin focus on work for a few hours each week. Nurses help Karin focus on a delicious cup of coffee so that if only for a few minutes, she can focus on being Karin. She doesn’t need the help at all – but it’s awfully nice to have when it’s there.
Karin and I were planning on going to see the travelling production of Disney’s The Lion King downtown at the PPAC tomorrow night. A Christmas gift from my parents, it would have been our first night out since my birthday in October. But as I mentioned earlier our only nurse has fallen ill and it’s fairly serious. Or serious enough for him to miss work for at least a week. I am of course not upset at him even if I am especially disappointed about missing the show. If anyone knows about missing work due to family illness it’s us. No, the real kicker is the fact that we have been alerting our nursing company for weeks that when we are forced to depend on only one nurse we run the risk of losing all of our help just like this. Last year we were stuck without nursing for two weeks when our only day nurse’s mother passed away. Again, not the nurses fault but the fact that no other nurse from the company had any knowledge of our case left us stuck. At the time we were fresh from the hospital and didn’t know any better. This time we’ve been trying to prevent its recurrence to no avail.
So if anyone out there know any young people who love helping others and are looking for a career where they can do just that — encourage them to become a nurse. And maybe give them a bit of a reminder that not all nurses need to work in a hospital or doctor’s office. Some of them even get to work in my home, and Liam makes that a pretty cool place to be.
So there you go folks. I guess I’m back. If you hung around long enough or you kept me in your feeds — I thank you. I’ll try not to disappear again. We’ve got some very cool projects and announcements booked for the next few months so stay tuned.