PHS has some really amazing families, and we mean really amazing. Families who have been running the race of life with a medically-complex kid for a while, advocating for their child and gathering tips along the way. One of those families, and mom’s, in particular has offered to share some of her wisdom with our readers. Some of her “wish I had known earlier” tips for all of the new families entering the world of caring for a medically-complex patient. We are so grateful to have Tatum, of Ain’t No Roller Coaster, as our guest blogger this week. Our hopes are that this post can serve as a guide for families learning to navigate the sometimes tricky and uncertain waters of medical care. We’re not saying it’s easy, but we can assure you: caring for a medically-complex child in the home is what we do every day. PHS will always be here to help you along the way, and in combination with PHS and tips from parents like Tatum, your child is certain to thrive at home.
When your child is in the hospital, for any amount of time, the most pivotal goal is bringing him/her home. After a six month NICU stay that was laced with setbacks, I so badly wanted my son, Owen (2), home. I wouldn’t let anyone mention the ‘H’ word around me or Owen for fear that the mere mention would jinx it from really happening. I didn’t even set up his home nursery until the day before he was scheduled for discharge. I didn’t think I’d be able to handle the hope being squashed if it didn’t come true. We all know it; bringing your child home from the hospital is a big deal. THE big deal.
Walking Owen out of those doors, for the first time in his 6 month life was truly one of the happiest moments of my life.
Just behind that happiness was fear. Owen wasn’t my first child, or even my first preemie to come home from the NICU, but there isn’t much that can prepare you to bring home a medically complex child. On top of being a mom, at home, I am the doctor, nurse, respiratory therapist, pharmacist, occupational therapist, unit coordinator and insurance claims auditor.
I’m not sure the magnitude of that responsibility really hit me until Owen was finally home with us. Born April 21, 2011 at 24 weeks, 5 days gestation. Owen had a course complicated by Cytomegalovirus (CMV) causing his intestines to perforate when he was one-month-old. In his 181 days, 11 hours and 57 minutes (not that I was counting) in the NICU he endured 5 surgeries, 75+ blood and blood component transfusions. He had a total of 12 weeks on the ventilator, with about half of that time on the oscillating vent. He came home on continuous oxygen, 30 daily syringes of oral medications and 100% g-tube feedings that ran 16 hours of the day.
In the first days at home, it took me an hour each evening to prepare all of his feedings and draw up all of the medications for the next day. My husband Kyle and I were taking shifts sleeping on Owen’s floor. He set his oximeter off so frequently that we didn’t want the whole house awake with each blaring BEEP, BEEP, BEEP. There were also the round-the-clock feedings and medications and, the constant fear at every cough, wheeze or odd number on the oximeter. Managing Owen’s care was a 24 hour a day job.
I never wanted to complain – I knew exactly how lucky I was that my son survived. I knew too many parents who would give anything to be able to still hold their child. I felt I owed it to them to stay positive. But now that Owen’s care is less onerous, I can look back at these 20 months that he’s been home and admit they’ve been really difficult. Exhausting is probably the best word for it. I was simultaneously trying to process and heal from the trauma of watching my son fight for his life and suddenly becoming some sort of a one-patient medical expert.
Not that I had time to read a book, but I really wished there was some sort of a manual that came home with Owen. We had training from PHS and the nurses to prepare us to use the equipment and tricks to keeping his medicines and feeding organized. We were prepared to keep him safe and perform his care. However, there was still so much to learn on the fly. Some of what I wished I had known sooner was functional, some was more emotional. Here are the top five things I wished I had known sooner.
I like to think of myself as a reasonably intelligent person. However, I could read our insurance coverage manual front to back and have no better understanding of our coverage than if I didn’t read it at all. I’m pretty sure it’s written in alien, because the words don’t look like any other language that I’ve ever seen. I wish someone would have told me to call insurance customer service with a list of every equipment, medication and therapy and ask these questions. I could have saved our family thousands of dollars had I known to ask these questions. It wasn’t a lesson I wanted to learn the hard way.
While in the hospital, we were surrounded by other families and hospital staff that understood what we were going through. Coming home can be isolating. For us, it was cold and flu season so we did not allow many visitors into our home and Owen did not leave the house. As his main care provider, I also did not leave the house much; it was a lonely time. I especially felt a need to connect with people going through similar circumstances. Overtime, I used social media to connect with other families from the NICU and eventually met other families online who had cases more similar to Owen’s. Online “friends” will never replace real-life friends, but the world of medically complex children isn’t very large and it’s comforting to meet others who get it. To find these groups, I mostly used Facebook and searched “Preemie” and “Micro-Preemie”. You can find groups for just about every diagnosis.
One of the hardest things for many of our friends and family to understand about our new life is that we need to stay isolated. When people are permitted to be by Owen, we will ask them about their hand washing and vaccinations. At worst, we were told we were being “over bearing” and more often we watched people roll their eyes at us. Yes, we chose to be stricter than some, but no stricter than what was recommended by Owen’s medical team. He still spent 50 days in the hospital with respiratory infections his first cold and flu season home. I never imagined our attempts to keep Owen safe would offend others. I had to learn to not care that they were offended and care for Owen in the best way that I knew how.
The demands of parenting any child requires respite from time to time. When your child has the added complexity of medical problems, that need doesn’t go away, but it’s often more difficult to step away. Not everyone is qualified or comfortable learning how to care for Owen. Two years and just one week completely off oxygen, I still don’t have a lot of people I can leave Owen with when I need a break. However, I am getting better at asking when I need time to myself. I’ve found that when I do ask, our support system will find a way to make it happen. I had assumed that we wouldn’t qualify for respite care and never asked. Recently we found out we do qualify. It took me 20 months of being home before I figured that out. I wish I had asked sooner.
Our first son, Kellen, was 27 months-old when Owen was born. That’s a very young age to meet a 1 pound 12 ounce baby who is hooked up to wires and stored in a plastic box. Kellen handled the NICU, and coming home like a champ. What he struggled with were all the re-admits to the hospital. About a year after Owen was born we started to see changes in Kellen’s behavior. He was angry and had fears of things he used to love, like fire trucks and ambulances. To most people, Kellen seemed like any other three and four year old. But because he was struggling with emotions at home and school, we decided to have him see a play therapist at his school. It’s a difficult to consider your young child needing help, beyond you, to work through emotions, but I whole heartedly believe it’s the best thing we have done for Kellen. As I see it, Owen sees 7 specialist and 8 therapist to help him recover from what he’s been through…his brother needing a small amount of help too is reasonable.
There is no one right way to raise a child, medically complex or not, but it is so nice learning from those who are in similar situations. I hope a few of my lessons will help others in their own journey. I still have much to learn, so if you were to write that missing manual for bringing home a special needs child, please share.
About Tatum: Tatum is a blogger at Ain’t No Roller Coaster, a blog about her family’s journey with prematurity and special needs. Her focus in writing is to celebrate, heal and connect with those on a similar journey. Her symbol is the zebra whose black and white color signifies the duality of life – often the most difficult challenges come along with the greatest joys.
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