The specifics of what is happening with the nurses at Faith’s hospital Mott Children’s in Ann Arbor, I haven’t a clue about. It is not that I don’t care, because I really do. I think it is a matter of, I am dealing with as much mentally exhausting stuff as I can right now, and honestly, I’m not sure I can handle the details. Mott, is our place, our second home, and it has been since Faith was about four years old. I see it as kismet honestly, the fact that no matter how hard the world has pulled me to other places, no matter how much it seemed home wasn’t going to be where I grew up, I ended up here….physically home, and just fifteen minutes from arguably the greatest children’s hospital in the mid-west.
So what I feel the need to do, is not argue the points of whatever it is that is happening….because I know there’s something about concierge medicine and nursing coverage, which literally could send me into a place not only mentally but physically that would not be good….That’s not my place. But to tell you what I am the expert of, being a mom of a chronically ill child who depends on the nurses of Mott Children’s Hospital.
When I decided something needed to be said from a parents perspective, I took a few notes about things I wanted to be sure to cover. Specific situations, specific nurses….My list grew and grew…..I considered talking to Faith about this. Asking her for her expert opinion and then I realized, If I did that, I would have to explain to her the reason for speaking up, and she would know, her nurses, who love her and know more about her than you can imagine, are dealing with some troubling issues. And honestly, she doesn’t need another worry.
The nurse who comes to mind in my first memory of Mott is Melissa. I was a new Mott mom then. Faith wasn’t even diagnosed at the time. She spent our first few days with us, preparing Faith for a biopsy, that would eventually diagnose her. We knew literally nothing. I was terrified and not even able to hold a conversation with the doctors. She suggested to me I take notes of the conversations and then, I could remember what follow up questions I wanted to ask. From day one, I realized the nurses at Mott, were all about taking care of Faith and me too. They wanted both of us to be ok.
On our fourth day of admission Melissa had a day off and Faith was sad about not seeing her…so when she came back she had this bag of stuff she had gotten for Faith…to cheer her up because Faith had been on her mind the whole day on her day off…..the Hello Kitty t-shirt is still in my nightstand, as a reminder of how far we’ve come.
Then there was Laura. Laura and I didn’t have the same kind of relationship as I had with Melissa…Melissa was someone I wanted to take home with us….she was a nurse that I could literally live with. Laura was different.
She was all about teaching me to do what it was that I needed to do. There were times I thought I didn’t like her. I felt like she didn’t possibly understand how hard all of this was for me. The reality was, she did. She knew I had to suck it up and learn everything I needed to learn to take care of my kid. And she was my great teacher. One time she challenged a pain medicine Faith was on and I literally thought I would smack her, looking back, as an educated mom, how amazing is it that there was a nurse, willing to put herself on the line to be sure my daughter didn’t end up dealing with withdrawal symptoms on top of everything else.
When Faith got her first colostomy and I first saw her intestines out of her body, I passed out….I laid next to Faith’s hospital bed and cried and asked Laura how I would ever take care of her when I can’t even look at it…..She promised me she would help me. She did. Less than three days later, with Laura by my-side I changed that bag….and I’ve been changing them ever since. I could tell you story after story about Laura….She’s been with us through the whole journey. I am so grateful for tough nurses like Laura.
Also from way back in Faiths young years there was Jenny. Jenny still takes care of Faith. Even if she doesn’t, she always makes a point to come in and check up on her when we are admitted. She knows everything about whats happening in our lives and truly cares about how everything is going.
Because Faith has a central line and has for much of her life, we make more frequent trips to the ER. You see when Faith gets a fever, we have to go. They have to be sure that the fever isn’t due to an infection in her line which could lead to a serious illness called sepsis. On one of our early ER trips, we met Leah. Leah was a nurse that instantly seemed to know everything I was worried about…..come to find out Leahs child is diagnosed with an illness that has similar issues to Faith.
Leah is one of the people who has transitioned from Nurse to friend. She’s always up for bringing us whatever we may need when we end up admitted and on precautions. If you were to ask Faith, who of the nurses at Mott have we become friends with, her answer would be different than mine. She really believes they are all our friends…
When people ask me if Faith has a nurse, who specifically cares for her I would tell you that is Jayne. Jayne has worked for pediatric surgery since we first came to Mott. When I tell you how I love this woman, you can trust me that the word is not an exaggeration.
She is there when we need her. She is always willing to problem solve and help to figure out what is best for Faith. She is thoughtful, smart, and extremely patient. She’s one of the people on Faith’s care team that I truly believe loves Faith. Sometimes Faith has to have things done that are not pleasant, maybe even painful. Faith’s first question is, can Jayne do it…..if you have a child with a chronic illness, you now get why I love her.
I could tell you story after story about the nurses at Mott, really I could call so many of them out individually. Because make no mistake, these nurses are difference makers in the lives of kids like Faith.
To sum it up, the importance of nurses who make such a difference, I would have to tell you about Ann. Now, when we started this journey with a rectal biopsy eight years ago I had no idea the journey we were up for. I can honestly say, we don’t really have easy days, there are good days and bad days, but we’ve left easy carefree days behind.
Ending up admitted, doesn’t always mean a bad day. Really, we don’t like when Faith is admitted, but not all admissions are bad. Usually we are there for IV antibiotics which tend to make Faith feel her best and its, well ok. Every once in a while, an admission is a bad day……
The one bad day I am talking about was one where Faith was admitted with a fever to rule out sepsis. Unfortunately, when they drew her labs her broviac also quit working. Which meant, another surgery and regular IV would need to be started. For some reason the mention of the IV sent Faith, who was eleven at the time into absolute hysteria. This child who had been given hundreds of IVs was suddenly terrified. She was screaming, and I mean really screaming.
As close as Faith and I are, and as much as we had been through together I could not calm her down. I myself was becoming a bit hysterical. Thats when Ann who was the nurse in charge that night came in the room. She asked me if I wanted to go walk for a minute and she excused the other people from the room. She sat next to Faith and held her hand. I could hear her from the hallway telling Faith she totally understood why she was so upset.
It wasn’t long she had her totally calm and had the IV team in the room to place the IV without any issues. She talked lovingly and quietly to Faith the whole time. When they finished, she basically explained to everyone in the room that no matter how many times you go thought this, its never easy, and none of us can understand what she’s thinking. She then helped Faith get ready for bed and without saying much turned the lights off for us to try to sleep.
Faith had not said a word to me, but looked over at me a while later and said, Ann saved me tonight mom, I really wasn’t ok, I love Ann.
I am that mom when we are in the hospital. I take care of my child. I don’t want the nurses touching her ostomy bags or feeding tubes. I question every vital sign taken and medicine given. I watch every single move they make. These nurses have never given me a single reason to question them, but I question every move. I am certain I make their job more difficult. I can’t tell you how many times an admission I am asking them to page a physician. I know on more than one occasion I have put them in the middle of a difficult situation.
Why do I tell you this, that I am so difficult? Because if you want to know how good your team really is you put them up against the toughest opponent and you see how they perform. The nurses of Mott win, every time. We have spent hundreds of nights at Mott…we have seen hundreds of nurses, and this mom, this overly aware, critically thinking mom, who would do anything she can to make the experience better for her child has…..nothing. Your nurses are the best there are, and if you want them to stay the best, you will listen to what they need, you will listen to what they believe, you will know those nurses are loved and supported by people who put their children’s lives in their hands.
myfaithsjourney 