My Sweet Daughter's Smile
Our family's journey through Mycoplasma pneumoniae-associated mucositis (MPAM). When our daughter developed this rare illness at age 9, my husband (a physician) and I (a critical care nurse) never dreamed of the challenges of being on the opposite side of the bed as a parent!
Let me start by saying that I am a Nurse and my husband is a Physician and neither one of us go anywhere near Pediatric patients in our professions. We don't even pretend to know what's up with that portion of the medical world's population. Since the time the kids were born, we have never diagnosed them for 2 reasons...#1 kids are not little adults....#2 they are our kids. Both of these reasons, we feel make us a bit skewed on what is an actual issue and what is a minor "normal kid thing". However, that being said, a mama does have her intuition and when you have medical knowledge and genuine understanding of the "worse-case scenario", you can be in for quite the emotional ride, when one of your children gets sick.....very sick.
This fall our oldest son (11 years old), who is a serious asthmatic, got an upper respiratory virus. High fever (104 F) for almost a week, cough, wheeze, the works. After 2 weeks and a few rounds of steroids and antibiotics for secondary infections, he was on the mend and back to school. Ahhh, peaceful house again....not so fast....remember we have 3 kids! Our youngest son and I start about the same day with same symptoms. I truly felt awful and my baby boy (7 years old) was pitiful. Same story. High fever, cough, but as I got better, he got worse. He developed pneumonia. So for him, 2 rounds of tushie shots, oral antibiotics, pushing fluids and steroids successfully kept him out of the hospital. So no surprise when my sweet girl (age 9y) most stoic, toughest of the bunch, "best sick child" started down the same path. I say to this day that God was really watching over us for a number of reasons as you will read, but for now you should know that my husband (the WORST sick person in the house) never got sick AND I never had 2 sick kids at the same time.
Our daughter is a beautiful strawberry-blonde with green eyes and freckles...tons of them. Her smile and giggles make everyone smile. She is tough though...afterall she is her mother's daughter! She never complains when she is sick, takes shots like a champ and even makes it to the toilet when she needs to throw up! Huge, I know! Anyway, she followed the same course as her younger brother and developed what was a clear bacterial pneumonia on chest x-ray. She too got 2 rounds of tushie shots and oral antibiotics since one would think we were dealing with the same bug as everyone else had. She started to get a bit better by Friday of the first week. Started to eat a bit and drank well. Less cough and no fever after 5 days of 104 F. That night she told me her upper lip felt funny inside. It was at bedtime when she mentioned it, and I briefly looked and felt comfortable putting her to sleep with the thought that she probably had a cold sore after having had such a high fever for several days. By then next morning, she woke me with a very swollen upper lip. I could clearly see the skin sloughing and blisters by then. I brought her straight into the peds office where we did some blood work for some more common causes, but nothing stood out. Both the Pediatrician and I feared Stevens- Johnson Syndrome (though just in one area of her mouth) or Kawasaki disease (though she is a bit old). She felt well and had no fever, so we decided to take her home and "watch her closely"....since we are medical people, everyone was fine with that. I was told that any sign of change for the worse, and I was to just go ahead and take her to our large trauma/ teaching hospital 45 mins away (since the local hospital would not handle this...whatever THIS was.. there). Oh, so I forgot to mention that my cub scout leader husband had our two boys on a campout that weekend, which I thought was for the best so that our daughter could rest. So we were back and forth by phone with all of our worries, but I convinced him that I had it under control. I am a CCU/ ICU trained nurse with burn unit experience ( sister unit to the CCU in the major university hospital that I worked in for years).
Fast forward a few hours, and my sweet girl started to look pitiful. She got real weak, 104 fever came back, her mouth started to blister more around her lips and she was actually asking for me to take her to the hospital to feel better. So I did just that. My husband hung with the boys until we had some kind of diagnosis or plan and Mommy and daughter spent some quality time in the ER. We were rushed through pretty quickly as you could actually watch the blisters form and pop and begin to slough off on her lips and gums. It was moving quickly. We were staying in the hospital...still no solid differential. Among the list was Kawasaki, Stevens-Johnson and, less likely, hand- foot-mouth. (My daughter was particularly offended that anyone would even suggest that she puts her feet in her mouth!).
So we get admitted by "Red" , as we affectionately called him, senior resident on-call for the night. He had red hair and freckles and our girl adored him. While she was getting admitted, I had a medical friend send me a message that encouraged me to look into this "rare" diagnosis that her cousins, nephew twice removed etc etc etc had been diagnosed with a few years ago. His symptoms sounded similar to our daughters she said. To this point, I had avoided looking anything up. I did not want to know anything that may worry me unnecessarily. I did not want to be "that-nurse-who-is-married-to-a-doctor-kinda-mom". I did look it up.....and ya know what? It did sound just like her symptoms and time course; so I turned into "that-mom". I marched right out to find Red. He was on rounds, which I interrupted, holding up my phone with my google search (I know, not even a genuine medical search) and I asked him nicely if he could look into this diagnosis. He kindly gave me a face and said..."you do know that that is just walking pneumonia, right?" I said, of course I do, but its the rest of it that I want him to look at. I admitted that it sounded out there and far fetched and did not mean to take over, but that I would really appreciate if he could look into it. He reluctantly agreed and I found out the next morning that he did.
On the second morning of our hospital stay, we met Dr. Dazzle as we dubbed the pediatric infectious disease doctor. My daughter thought that was what his white coat said, but it was just creased a little funny. We found his nickname to be a perfect fit. He had a dazzling personality to go with his years of training. He was calm, cool, wore a bow tie and was full of jokes and uplifting comments to keep our girl from being scared of the unknown. He announced to me on that day that the diagnosis that I asked Red to look up was now the primary differential. Labs were drawn to definitively confirm this, and it would take several days for those labs to come back, but he felt that she fit the symptoms. Good news right...well...not really. Symptoms will get worse and spread to other mucosal areas such as eyes and "girl parts". This diagnosis came with a "symptom management" treatment plan....comfort, palliative care.
As the night and days went on, her pain and symptoms got worse. The pneumonia looked better on x-ray, but her oral cavity was progressing rapidly. I watched and asked about everything. What the nurses gave her, when things were scheduled, what labs were ordered, what doctors were on, vital signs. I closely watched every assessment, read facial expressions, studied every detail of my daughters changing symptoms, and as teams of residents or nurses changing shifts gave report over her bedside, I added, corrected, and filled in the blanks as needed. I became part of the care team. We quickly realized that my daughter got upset over bedside discussion of plan of care or differential diagnoses, so we started to step into the hall. I was always asked to join in on rounds. I became my daughter's voice and advocate as her ability to talk went away. Her oral mucosa sloughed off throughout her whole mouth, down her throat, and her tongue and palate as well. Each day brought new pain and less and less smiles.
The night that we got a definitive diagnosis was one of the worst nights as a nurse mom. That afternoon, our daughter's airway was becoming more affected. She had a lot of sloughing and swelling in her throat and palate. She could not swallow well and was not speaking as it hurt too much. As a critical care nurse, I laid awake all night, watching the sat monitor, and her breathing pattern. I must have dozed off at one point and woke to a nurse, not ours, squeezing by me to turn down the Spo2 monitor alarm...not the sound, the limit! I woke right up and saw a beautiful pleth and a oxygen saturation in the low 80's. That nurse did not assess my daughter or wake her, she just stopped the alarm from doing what it was supposed to do. When I think something is wrong I am a bulldog nurse and a big grizzly bear for a mama...combine the two and watch out! I knew baby girl was not ok. Our nurse's response was not enough for me....I asked for the primary care team to come in and repeat a chest x-ray, get some labs and assess her. Her pneumonia and atelectasis combined with pain medication, and most importantly her swollen airway were all contributing to her low sats. She had also started to develop sloughing in her "girl parts" and her eyes poured continuous tears with conjunctivitis. At that time, the results of her labs had come back confirming that what were in fact seeing was Mycoplasma pneumoniae with associated mucositis (MPAM).
While M. Pneumoniae is a significant cause of community-acquired pneumonia in children, the mucositic involvement is rare. It falls in the spectrum of Stevens-Johnson Syndrome but affects the mucus linings in the body only. There were so few cases documented in the past 60 years, and only a handful of children (especially girls), that there was little literature about how to treat this autoimmune response. Given her respiratory distress that night and swelling, the team decided to try a dose of high dose steroids, and another round of antibiotic. By this time, she already had a PICC line inserted and we were doing TPN for nutrition, fluids, and continuous Morphine with PCA dosing. She made it through those tough few days without needing to be intubated. My tough girl!
The primary care team and Dr. Dazzle had begun to utilize many subspecialties from ENT, to dentistry (mouth care was near impossible),dermatology, to pediatric oncology as the mucositis is common in the immunocompromised kids. I had the idea of getting the cold compress maxi pads from OB/GYN and dermaplast spray to make her girl parts more comfortable. Each morning the team and I brainstormed about what would help with that days new symptoms.
My sweet girl whose smile could light up a room was not smiling anymore. She was getting discouraged, irritable, stubborn, and less and less cooperative. She would write notes to me in capital letters with exclamation points that she "DID NOT WANT TO TRY ANYMORE MOUTHWASH BECAUSE EVERYONE TELLS HER THEY WILL HELP AND THEY DON'T!!!" She could no longer open her mouth at all and lock-jaw was a becoming a concern. We had to get her to open her mouth and get some oral care done...it had been weeks. I was the primary source of her frustration and anger. She was in such pain and was scared and I had to get her to push through that to work her mouth open. Then we realized that her tongue had become stuck to her teeth in its healing stage, making the pain that much worse. She had to tear her tongue to get her mouth to open. I cried with her, rocked her, reassured her, sang to her, but now we needed to do this. As she wrote me the next sentence, my heart broke, "I JUST WANT YOU TO CONSOLE ME AND HAVE COMPASSION FOR ME! IT HURTS SO BAD!!!!" I had to step out of the room and call my husband...and cry. I had been comforting her for weeks and would continue, but I knew that she had to do this or it was going to become a bigger, more complicated problem. Even with our efforts, it still might go there. So, I asked her to be strong with me and that my heart hurt worse than hers to see her go through this. I would truly do it for her if I could......then she took a deep breath and she did it. Crying the whole time with her finger on the PCA button continuously, she did it...she opened her mouth. We quickly did oral care which made her more comfortable. We could get a look in her mouth for the first time in days and it actually looked better!
She started to improve from then on. Talking and eating were huge challenges as her tongue had some damage. She could not talk well, the muscles were weak. She could not move food around her mouth and had to have speech therapy come teach her how to move food around with her finger and how to practice her speech. Her taste buds had been harmed as well, making food taste not like it should. She did not want to eat what tasted bad or bland. Ultimately what should have been a 6 week ordeal (according to the literature) lasted a few weeks and she was able to go home. The day after she discharged from the hospital with a huge smile and tears over leaving the doctors and nurses she would miss, she headed back to school. She wanted to be "normal" again. She missed her friends and routine and even math!
I have a newfound respect for pediatrics. Those care providers have the entire family to care for, not just the patient. Watching my daughter go through this, was one of the hardest times of my adult life. Being a nurse, was helpful overall, but really set my anxiety bar very high. After she would fall asleep at night, my husband and I would discuss all of the what if's, her labs, the updates of the day, our medical worries, how we would work out the schedules for our boys and dogs, her school work etc. Life was very hard for the whole family those weeks but we made it! I will never forget my little boy's reaction when I picked him up from school one day while his sister was in the hospital. She started TPN that day and I was tearful. He started to cry and asked if she was going to die since she could not eat. He was hysterical stating that she could not die because she was not just his sister, but his best friend (they have always been exceptionally close). Of course, I explained it all to him and we both settled down some, but whew...tough stuff!
She is 100% healed now approximately 2 months after the beginning of symptoms. She has definitely had some post-traumatic stress since that stay. While she coped so well at that time, she has been overly worried about every sniffle, cough, lump and bump thinking it will all lead to a PICC line insertion or hospital stay. We are getting through it though. The visits from school staff, her friends, our friends and family, cards, flowers, stuffed animals, prayers upon prayers, the amazing child -life specialists who brought crafts each day and played games, the Ronald McDonald House and donations of time, food etc were so overwhelming. Seeing these things day in and day out as a nurse is one thing, but when it's your baby, you realize just how important support and love are to a sick family. Seeing my beautiful strawberry-blonde, freckle faced girl smile each day makes my heart smile. I have not taken that smile for granted even one day since!
My name is Sarah Matacale, RN,BSM, CCS, CDI. I have always enjoyed writing the stories that are closest to my heart. I hope you enjoy this one and learn a little something as well.
Joined Jan '17; Posts: 32; Likes: 189.Jan 12Your article hits home with anyone who has a child and is a true reminder God only loans them to us for a period of time. Sometimes it's a double edged sword being a nurse and a parent. Thank you for your thoughtful submission and sharing your "nightmare."Jan 12Thank you for your story. So glad your little girl is ok. I can relate - when my son was 4 years old he contracted E.Coli which lead to Hemolytic-Uremic Syndrome. We spent 3 weeks in the hospital. Its one of those life events that just never leave you.Jan 12I am all mushy mushy weepy right now.
Such a brave and courageous little one your dtr is going through this. Her sibs and her parents too.
Holdings good thoughts for you allJan 13Oh dear, I couldn't help the tears rolling down my eyes. Your family went through a great ordeal. I couldn't hold myself back from thinking of how I'd handle illness as a nurse when I marry and have a family of my own.
I'm so glad she's doing better now and I pray that none of yours would go through this again.Jan 13Oh my goodness--what a time you all went through! I am so thankful that your daughter is healed. Thank you for sharing this very poignant article, written straight from your heart.Jan 13I had a son who had the "flu", ended up in ICU on a ventilator. It's a life changing experience for us the parents. He doesn't remember much and hopefully in time your daughter won't either. Thanks for sharing. Hugs to you all.Jan 13Wow,Beautiful description of the events! I did cry reading through your post.I have 2 kids and feel the pain.I'm happy that all your children are feeling better.God Bless!Jan 14Felt like I lived it with you. Shudder ... it's always worse when our kids are sick or hurt - we wish we could take it for them and it's even more painful when we can't.
No one told me how hard being a parent really would be. Toughest job you'll ever love.Jan 14I am so thankful your sweet girl is well now. Having survived the raising of 3 children (survived in that they all made it to adulthood), I remember a few times then, and even now, as adults, that my heart has been torn and terrified for them. May your children continue to be healthy, and God bless!
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