I am writing this now partly because I know people have a lot of questions, partly because if I had not lived it I'm not sure I'd believe it, and partly because there are details I will never be able to convey in polite conversation. As she sleeps next to me , I still can't believe she's here. The last week seems surreal. Like a nightmare from which I just woke. But then I notice her skin...her scars...her still-matted hair and I realize I want to remember it because she may one day need a reminder of how strong she is...what a fighter she is...and how much she is loved.
So this is Maya's story:
The Beginning
On Wednesday, January 26, I landed from a 3-day business trip and drove directly from the airport to pick Maya up at day care. I considered running a few errands first, but I had missed her so much I decided to wait. I walked in to her classroom at 3 pm. She was seated with her back to me eating a snack. I waited behind her to surprise her, but when she turned around it was I who was surprised. The whole right side of her cheek was as red as Elmo, as was her neck. I kissed her and gave her a big hug. She hugged me lightly. I looked under her shirt to find that the small rash I had noticed on her belly on Sunday was now redder...angrier. Her teacher said she had just gotten up from a nap, and assumed she was red from sleeping. She was in good spirits, but the rash was so strange I decided to see if I could get her in to the doctor. Luckily the Dr's office agreed to squeeze her in within the hour. The appointment gave me just enough time to pick up her big brother and drive them both the the office. Her actual doctor was not available so a younger doctor took a look at her. He diagnosed her with a sinus infection with dermatitis. She and her brother were rather rambunctious in the room. But as I went to lift her off the table she cried and said it hurt. I thought I might have picked her up funny.
On Wednesday, January 26, I landed from a 3-day business trip and drove directly from the airport to pick Maya up at day care. I considered running a few errands first, but I had missed her so much I decided to wait. I walked in to her classroom at 3 pm. She was seated with her back to me eating a snack. I waited behind her to surprise her, but when she turned around it was I who was surprised. The whole right side of her cheek was as red as Elmo, as was her neck. I kissed her and gave her a big hug. She hugged me lightly. I looked under her shirt to find that the small rash I had noticed on her belly on Sunday was now redder...angrier. Her teacher said she had just gotten up from a nap, and assumed she was red from sleeping. She was in good spirits, but the rash was so strange I decided to see if I could get her in to the doctor. Luckily the Dr's office agreed to squeeze her in within the hour. The appointment gave me just enough time to pick up her big brother and drive them both the the office. Her actual doctor was not available so a younger doctor took a look at her. He diagnosed her with a sinus infection with dermatitis. She and her brother were rather rambunctious in the room. But as I went to lift her off the table she cried and said it hurt. I thought I might have picked her up funny.
We returned home and she played with her big brother and even took the z-pack medicine and Benadryl she was given like a big girl. My gut still told me the rash was not dermatitis. I slept with her in her big girl bed that night. She woke frequently saying her eyes hurt.
By the next Morning, she was acting very strange. She would tell me not to touch her, then run to me for comfort. Picking her up under her arms made her cry. The skin around her eyes was very red. She walked like a tin soldier. She said her head hurt. Then her neck hurt. Then her legs hurt. She refused to drink. My stomach became even more uneasy.
I made her another doctor appointment for that afternoon. We saw the same doctor we had seen previously. He acknowledged she had gotten worse, not better. However, he had little to go on other than the rash. She had no fever. Her lungs sounded great. All her vitals were perfect. But she was not drinking. He looked conflicted. He said I could choose to take her home while they ran blood work or take her to the ER to ensure she had supportive care (ie fluids) while we "figured it out". He would call ahead if I chose to go to the ER.
And here is the part I would emphasize: every managed care organization will tell you that an ER trip based on these symptoms is not necessary. I have even heard benefits directors use cases like this as "examples" of benefits abuse. Frankly, screw them. In my mommy gut... in my mommy bones...I knew something was wrong with my baby....and I
needed to know what it was. If it turned out to be an "overreaction" then fine...I'd true up on the other side and pay the "ER penalty" for no admittance. I told the doctor we would go to the ER and most importantly the one that specialized in Pediatrics.
needed to know what it was. If it turned out to be an "overreaction" then fine...I'd true up on the other side and pay the "ER penalty" for no admittance. I told the doctor we would go to the ER and most importantly the one that specialized in Pediatrics.
The ER
We pulled in to Mercy Hospital parking lot at 4 pm. Maya would now not let me carry her at all and insisted on walking. But walking hurt her so the going was slow. Several people asked if they could carry something for me so I could carry her. I just stayed close and encouraged her when she needed it. In the ER she stood holding my knee and pointing to everywhere the paperwork said "Maya." We were called back into the Peds section at about 5. Seeing how sick everyone was in the ER made me wonder if perhaps this was a bad decision...it might make her worse. But the nurses were so calming and the children's section made her smile...especially the fish. The nurse took vitals and had me relive the story. She moved us quickly back to an ER room.
We pulled in to Mercy Hospital parking lot at 4 pm. Maya would now not let me carry her at all and insisted on walking. But walking hurt her so the going was slow. Several people asked if they could carry something for me so I could carry her. I just stayed close and encouraged her when she needed it. In the ER she stood holding my knee and pointing to everywhere the paperwork said "Maya." We were called back into the Peds section at about 5. Seeing how sick everyone was in the ER made me wonder if perhaps this was a bad decision...it might make her worse. But the nurses were so calming and the children's section made her smile...especially the fish. The nurse took vitals and had me relive the story. She moved us quickly back to an ER room.
Maya still cried when she was picked up and screamed when we removed her shirt. By this time the rash had changed. It was in different spots...different colors. Her neck was still fiery red. Maya saw her first doctor at around 5:30. The brilliance of a Peds ER is that the Drs know how to soothe a child while they examine. Maya was not a happy camper, but Dr. Pellican calmed her enough to do a full check up. I recounted every detail of the last 36 hours to her. She said it could be Mono...it could be strep...it could be Adeno virus. Having no fever made Mayas case perplexing. She wanted another opinion. During the next few hours Maya would see 3 more doctors, all of whom I made sit quietly while I recounted every detail from my perspective (I refused to let Maya's care hinge on a shaky game of medical telephone and I know I would have appreciated the information if I was them.) Each Doctor had different questions. (Is she immunized? Who has been sick near her? You are sure there was no fever?)
In the course of the evening Mayas rash changed again. Dr. Pellican said she wasn't comfortable sending Maya home when she wasn't drinking, and they made provisions to admit her.
At around 8ish they inserted an IV, for which Maya didnt even cry (tough little girl!). Her Grandpa (and my iPhone) were there to soothe her. At approx. 9 p. Dr. Alvan came to examine her again and said they think she has Erythema Multiforme Major caused by adenovirus. He said it was "sometimes called Stevens Johnson, but is most likely not full SJS because it is not causd by medicine". I was thankful to have even a tentative diagnosis.
Over the next few hours grandpa leaves and Maya and I wait in the ER for our room. She sends me on endless trips just outside her door to find a movie that suits her ("no! Not dat movie mama. Dat one!" ) and while she is occupied with a show I google everything I can on erythema Multiforme major. The info is not pretty, but it is tolerable.
What does not settle with me however is that EMM usually presents first on the limbs
and the spreads to the trunk. All of the pages reference Stevens Johnson as a similar but (recently confirmed separate) condition that starts on the trunk and spreads out (as Maya's was doing.) I decide to start researching SJS.
and the spreads to the trunk. All of the pages reference Stevens Johnson as a similar but (recently confirmed separate) condition that starts on the trunk and spreads out (as Maya's was doing.) I decide to start researching SJS.
I google "Stevens Johnson Syndrome". I click the first link. The image loads. I nearly pass out.
I sit down slowly on the bed next to Maya. I consciously slow my breathing. I learn that SJS also involves the eyes and the mouth and has early onset of blisters. Some websites say up to 30% of patients die. I try to keep from hyperventilating as I read. I comfort myself that she has not yet presented some of the more serious symptoms.
At 11 pm we are taken up to her room. I have been around hospitals a lot in my life. I know she is not in a normal room. She is in a step down unit, next to intensive care. As they move her to her new bed I notice her back has started to blister. Her binky falls out. I realize that her mouth is now red and starting to blister. I sink in the bed next to her and try not to cry. She now has all the early signs of SJS.
The Nightmare
The next 72 hours are a blur. I cannot tell you when most things happened or what time they happened, only that they did. Todd and I watched helplessly as the skin on our precious baby girls body deteriorated rapidly. Her mouth from nose to cheek to chin lost all of its skin. Her eyes blistered and swelled shut. Moving her in bed caused the skin on her back to slough off. Leaving the room for 30 minutes meant you retuned to find an even sicker baby. Her long beautiful hair first stuck to blisters, then became matted with skin and blisters. They put her on morphine for pain. It did not always help. The Benadryl given for inflammation stopped working every 4 hours, but was given every 6. She was listless and barely coherent most times. She drooled incessantly as her mouth decayed. Her fever finally spiked. She refused to eat or drink.
The next 72 hours are a blur. I cannot tell you when most things happened or what time they happened, only that they did. Todd and I watched helplessly as the skin on our precious baby girls body deteriorated rapidly. Her mouth from nose to cheek to chin lost all of its skin. Her eyes blistered and swelled shut. Moving her in bed caused the skin on her back to slough off. Leaving the room for 30 minutes meant you retuned to find an even sicker baby. Her long beautiful hair first stuck to blisters, then became matted with skin and blisters. They put her on morphine for pain. It did not always help. The Benadryl given for inflammation stopped working every 4 hours, but was given every 6. She was listless and barely coherent most times. She drooled incessantly as her mouth decayed. Her fever finally spiked. She refused to eat or drink.
We sat and watched as our baby girl became something out of a zombie movie. You know that feeling you get when your child leans too far back in a chair and almost falls, but doesn't? That was the feeling that hung in her room for 72 full hours.
A seemingly endless supply of Hospitalists, dermatologists, opthamologists, plastic surgeons, and infectious disease doctors came to see her. Aside from ensuing they heard my side of the story I asked each one of them the same questions "How long have you been a dr? How many cases have you seen? How would you rate her case on a scale of 1 (best) to 10 (worst)? When will the sickness peak?". Tenure varied from 8 to 25 years. Most had only seen a few cases. Depending on their specialty they rated her between a 5 and an 8. But they all agreed on three things: (1) they had no idea when it would peak (2) it would only get worse (3) There was nothing they could do to stop it.
Finally on Sunday the Chief Hospitalist came to see Maya. He had been a Dr for over 25 years and had seen more than 20 cases. I peppered him with every reserve question I had....and then some. After about 10 minutes, I asked the question I had been waiting to ask for 3 days. "Of the 20 cases you have seen, how many have you sent home?" He paused to think. I held my breath. "All of them" he said. I tried not to cry.. It was the only sense of hope I had felt in days. I heard him also say that some went home without fingers, some without toes, some without sight....but I didn't care. I just wanted to take. my. baby. home.
The IV
On Sunday night I made my first full attempt at leaving the hospital. I had not eaten or slept in four days. The plan was that I would stay and play with Conor until he was fast asleep, then leave him with Grandma and Grandpa at home and relieve todd at the hospital. At 9:30 pm I texted Todd to tell him I was going to leave in the next hour. At 10 pm Todd had not returned my text so I called on the drive to the hospital. No answer. I am now worried. I try one more call. Todd picks up the phone and I hear Maya screaming uncontrollably in the background. Without a word from Todd the phone disengages. I begin speeding to the hospital. As am I almost there I finally get ahold of Todd who informs me Maya's IV had stopped working. She was no longer receiving fluids or morphine for pain. He had to hold her down while they removed all off the IV tape. The procedure had ripped all the skin from the back of her left hand and half of the skin from her wrist. All without pain medication. When I arrived at the room Maya was still sobbing lightly. Her voice was hoarse from screaming. The nurses arrived back to the room to tell us they had to reinsert an IV on the other arm. We would need to hold her down. So with both Todd and I holding our dear sweet screaming baby down with our full bodies, we watched as two nurses clumsily fouled one IV in her hand and then set out to stick her arm. The stick was successful but blood went everywhere. 5 more minutes before the procedure was complete. Both Todd and I were beside ourselves. Maya was at least now getting some pain relief, but Todd and I were nearly done. Todd left to be with Conor and I fell into bed next to Maya...Right before she fell asleep I kissed her on the head and said "we're going to fight this and your going to get better ok? Can you say I get better?" She muttered "I get better" and drifted into a morphine haze.
At around 3 am as I sat watching her heart and oxygen monitor, she suddenly rolled over in her and kicked me in the stomach, just like she would do at home. My mommy bones tingled with hope.. It was the fist time in days she had moved on her own without screaming. I prayed she was dreaming of getting better.
Finally...Hope
On Monday, we noticed Maya's face had stopped creating new blisters. She awoke and said that she wanted to drink. Slushies to be exact. She started to send the nurses on endless runs for the slushy color of her choice. The sickness continued to spread on her trunk and was now spreading to her legs, but from the neck up she started to show some improvement. The doctors informed us if she didn't start to eat on her own they would have to insert a feeding tube, a tenuous proposition given the state of her facial skin. Also, if she didn't get up and move she ran the risk of pneumonia and other complications. So all Monday we prayed and encouraged her to eat and try and sit up.
At 3 pm on Monday,exactly 5 days after the nightmare first started, as I emerged from using the bathroom I heard Todd announce "Mommy! Maya just sat up by herself and wants to eat!". I looked at my baby. She was sitting up, smiling at me. "mama! I hungry! " she said. Todd and I both tried not to cry. She was starting to get a little better. As I went home that night to be with Conor she reached up to give me kiss. It was the first time she had pulled me close in days. Her face was still mottled. The sickness still spreading but she was at least showing some signs of improvement. I was not with her that night, but when I walked in her room late Tuesday morning she was trying to stand up and play....a very good sign.
Over the next 36 hours her upper body started to heal, her lower body started to decline, but then suddenly stopped. She wanted to play. She wanted to eat. She was tired of people doing things to her and kicked punched and screamed at every doctor and nurse that came near her. (not that I blamed her). As washing her wounds would be necessary, the doctor prescribed a relaxation medicine on top of the morphine and benadryl (common practice in burn victims as fighting the washing can cause more damage.) and so, they gave her a relaxation medication. She was still feisty. They gave her morphine. She was still feisty. They gave her Benadryl. She was still feisty. All of those medications and it still took four people to wash her. Secretly, I was pleased. The spunky girl I had left at home for a business trip over a week ago was finally coming back.
Within the next two days she was released to go home and heal. The doctors said they believed there would be no scarring, mentally or physically. Just as we were preparing to discharge her, the lab work from Friday came back to show that she had mycoplasma. A common sickness that has been identified in many cases of SJS in children. They believe the z pack she was give exacerbated the SJS. Only 3 in a million are diagnosed with the disease so they know little about recurrence but advised she be tested for antibiotic allergies.
As we got ready to leave the hospital, out of no where Maya looks at me and goes "Mama. ets go home. Dis pace is skair-wee". (mama, let's go home. This place is scary.)
Todd and I have been overwhelmed with the love and support we have received from our community of family and friends. We truly believe that Maya's case has turned out as well as it has because she had so many kind individuals (many who did not even know her) praying and sending her positive thoughts. When even doctors look at you and say "all we can do is support her and pray" it is impossible not to thank god for such a positive outcome. Thank you to everyone who has supported us and especially Maya. We will be eternally grateful.
5 comments:
This is the most heart wrenching story ever...but, the sweetest story at the same time. I love you all and am soo happy to hear she is finally doing better. "Good" comes to those who "do good"---if anyone fits that category, it is you. I have faith she will continue to heal and, one day, this will only be a horrible nightmare. Much love to all of you ...and especially beautiful Maya :)
We've been thinking of you constantly, sending prayers and positive thoughts. It has taken me several tries to read Maya's entire saga. Each time I'd read further into the darkest of this disease and its horrific attack, emotion would overwhelm me and my tears would prevent me reading on.
It is with a much lighter and happier heart that I know the story ends with a healthy baby, back in the comfort and familiarity of her home.
SO MUCH LOVE is sent to you, Todd, Conor, and most especially your bravest warrior Maya!
I'll pray for you family every day. Conor was one of my favorite students and I loved him and Maya both. Babysitting them was so much fun. You have such a strong amazing family and I am so glad that Maya is ok!
When Kristyna told me about what was going on with Maya, her details were sketchy, she was unsure what was really wrong with her but still upset that she was this sick. Several times on my way home from work, I would stop in the daycare to see Kristyna and when she told me that Maya was Conor's little sister, I said no way...when I was at the daycare in the toddler room, I remember Conor as being more vocal and not nearly as shy as Maya is, but see the physical similarities. Our thoughts and prayers go out to you and your family as Maya continues on her journey of healing...thank you for sharing your heart-wrenching story.
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