On September 6, PHS was excited to celebrate the grand opening of its Milwaukee location with the healthcare community and area officials during an event held at our new office. Guests were invited to attend a continued education presentation by PHS medical director Dr. Roy Maynard, a ribbon cutting with the Pewaukee Chamber of Commerce, and hear from local mom Melissa, whose son Joey came on service with PHS last month once we were open for business in the area.
We caught up with Melissa before the event to do a Q & A about her family, Joey’s medical journey, and why she’s so excited to have PHS in Wisconsin.
A: My husband and I met in the military when we were stationed in Germany and have been married for 24 years. We have 5 kids – ages 20, 18, 16, 14, and Joey is 12 and our youngest. My husband works as a police officer for Milwaukee, and I am an in-home nurse for a young girl.
While the amount of time and attention Joey’s needs require hasn’t been easy for our older kids, I do think my children are more compassionate people because they have grown up with a brother who has medical complexities.
A: When I was 22 weeks pregnant, I found out at an ultrasound that Joey had a genetic defect affecting his gastro-intestinal system called prune belly syndrome (PBS). I was told that he likely wouldn’t be born alive, and if he was, that 50% of babies with this diagnosis don’t make it to 4 months old – and the 50% that do are not likely to live 2 years. So, the prognosis is grim, to say the least. Joey was born full term with 3 lbs. of urine in his bladder and spent the first 7 months of his life in the NICU because he was incredible sick – but I wanted to give him every chance we could. And look at how lucky we’ve been to have him in our lives.
A: Joey’s medical needs started the first day of his life when he underwent surgery to address malrotation due to PBS. He ended up having 16 major surgeries throughout his 7-month NICU stay.
He had a g-j tube placed, and it accidentally perforated his small intestine and he developed sepsis. That led to him having a trach placed because he failed extubation three times. He required a vesicostomy, or a hole in his belly button, to urinate because of the urological complications due to his PBS. He also had a pyloroplasty done because the bottom of his stomach wouldn’t close or open like it should.
At three years old, Joey was diagnosed with leukodystrophy and just recently it was discovered that he has a genetic mutation of his connective tissue, which is attacking the muscles and his brain. He had heart surgery last February to address complications with his arteries, and in the future, we’re going to be discussing a vessel transplant in Joey’s brain to increase blood flow. So, he has had an incredibly intense medical journey – but that’s what amazes me about this boy. Despite the countless hours at hospitals and clinics, surgeries, and hurdles, he is a happy 12-year-old who just keeps fighting.
A: I think our biggest challenge with Joey isn’t him at all – he is such a joy. The frustrations lie in scheduling home care nurses, ensuring we have coverage, getting the equipment we need, making sure we have supplies. Having a home care company that works with us. Constant conversations with insurance to ensure he can get the medications he needs. It just seems to be that you’re fighting one battle after another and trying to manage everything.
That’s why having PHS come to our area was a complete godsend. To have a company that is fighting for you instead of against you, and going above and beyond for your child, is everything. You guys truly try to make life easier for families whether it’s checking in on how our equipment is working, calling our insurance provider to settle claims, or providing a resource like MyPHS Portal to manage ordering supplies online.
A: I found out about PHS from one of the respiratory therapists who told me she was going to be working in the Milwaukee office. Then I later heard about how great the company was again from our vent coordinator at hospital who was excited to have PHS coming into the area – so after hearing about you guys from different people in the healthcare community, I knew I wanted to switch.
It has been so refreshing to work with PHS – our respiratory therapist Sarah just has the best communication back and forth with us to make sure things are going well for Joey, and we had no problems switching providers. I was so used to having to micromanage and take care of everything before, and now with PHS, I know it is all being handled. For the first time, if Joey has a medical need, PHS makes it happen.
A: It’s been a challenge finding a place where we fit in because few people can comprehend or relate to the complex medical needs that Joey has and what that requires of our family. Because his diagnoses are so rare, there aren’t a lot of support groups – but Prune Belly Syndrome Network Private Chat and Prune Belly Syndrome on Facebook are both private groups I have found that provide information and support, and have connected me with others in the prune belly syndrome community.
A lot of times there is a high divorce rate amongst parents of children with medical complexities because of resentment or high stress situations, and anxiety around the financial and emotional difficulties of constantly managing a child’s healthcare needs. I think my husband and I have managed it very well and have been determined to be a team and support system for one another, but it’s certainly challenging. (edited to add: if you’d like to read more about the marriages between parents of children with medical complexities, you can find our posts here, here, and here).
A: My main hope and goal for him is that he’s happy and has a good quality of life, because his future is completely unknown. Joey has over 180 diagnoses – so when you really stop and think about it, every organ and system in his body is impacted in some way. I always say that his greatest accomplishment is that he’s still alive – because I can’t even count on both hands how many times someone has given him a poor prognosis. And yet, he continues to defy the odds and remain the happiest kid there is. For him, it’s always been the quality of life.