This is Our Story, A Medical Narrative

While in Idaho (September 3-14), both Danielle and I had nasal "congestion" with the dust—as well as with the high elevation and lack of humidity. When we got back to Port Angeles, she remained stuffy and my allergy dissipated. Her lack of bowel movements I certainly noticed but anticipated one to happen at any time. I reasoned that since we had been to Idaho with different food choices and what was convenient on the road traveling, she would regulate as I still needed to, also. Perhaps teething played a role so I watched for other issues, but none seemed to occur for several days. She by Sunday, September 20th, seemed to have an ear infection and I presumed, not uncommon for babies. She wouldn't nurse on one side and was rubbing the corresponding ear. (We went out to a football game the Friday night before, so I thought that a contribution.) Also, we also had guests at our home Sunday, so I thought she was also frustrated and distracted in being sick and that we couldn’t do what we normally do. More descriptively, being at the end of an oral contraceptive pill pack and her responses caused me to be somewhat engorged but hand expression caused the same frustrated reaction from her. She would put her mouth on, then pull away with a crying noise, stop, and look at me. The pressure and “junk” in Danielle’s nose and ears, seemed by Sunday during the night, to have moved to her jaw line and below her ears. Subsequently, her not being able to eat appeared as too painful to do very well. Surely she wasn’t getting enough at feedings, but after company left, and she anticipated the breast but when put on, she would just mouth, no sucking, turn and made a sad crying noise again. I thought if she were sick, she may have had a sore throat. I started to use a bottle and dropper and pump milk to nourish her during this time. During the night she seemed to perk somewhat. I let her sleep a few hours in her own crib (the last time she slept alone that week). During the early morning she seemed find it difficult to breathe and her tongue was pushed to the front of her mouth (mouth continuously open). She began to choke on her milk within a few attempts, not catching her breath, and took her to the Olympic Medical Center Emergency Room (September 21st, between 6 and 7am). I took her in a onsie, sweat pants, a beanie (because I wanted to keep her ears covered), and a little sweater. I was very anxious waiting and perceived that I came across as an over-protective/reactive parent. Her symptoms included sallow eyes, droopy lids, tired and slow expression (though she still slowly smiled at 4 E.R. team members that were cooing and coaxing smiles), arms that would pick up and drop on the surface behind her, she was clammy, and she looked washed out and green-toned, to me. Her vitals were taken by Kelly and the shift had just changed so her ID band said “Wallace,” but saw Dr. Tordtini. Her weight seemed down, her legs were thinner and she was about 16 pounds on the scale, which is what she weighed a month prior at her four month checkup, --not concern for them. She asked when she last pooped and I said, it was, "several days." The doctor asked, pen ready, if she had a temperature and what her highest was. I said she felt hot at times, that my thermometer wasn’t very accurate and he asked what type it was and I replied that it was one taken at the temple. He said those were pretty accurate. He being some what eased with seeing a baby not fussing and even smiling, not coughing and with out other assessed symptoms, diagnosed Danielle with a flu. I replied that her temperature was 99 and he wrote it down. Her highest was 98.0. She seemed warmer than what would dictate her temperature and our house kept very cool (below 60). Danielle, who lay out on the bed in room one, slowly arched her back and head and looked up at him and smiled. Her eye lids were not fully open. I held her to me while he checked her with a stethoscope. Her head was weak and she couldn’t hold it up and seemed to me at the time due to the recourse in her head and neck. He asked other basic questions and had discussed keeping her hydrated but clearly stated that she wasn’t going on fluids. I also asked if a bulb syringe would work on the "congestion" at the very back of her nose-- that seemed to be a sinus sound, but he explained that she hadn't developed that yet and that the syringe couldn't influence the noise he heard of it anyway. Kelly came back in with orange flavored pedialite and asked if she would take a bottle. I told her she never had before and was breastfed but being asked, requested the smaller nipple since her throat and tongue were so swollen. She asked if I wanted to try a syringe since I mentioned I was using a dropper and I used that too, thankfully. She directed me to hold her as I normally would and see if she would first take the bottle. She took a little from the bottle but only because she was biting the nipple. She said that I could stay as long as I liked to feed her. She said politely that no one knew my baby more than me, but they were quite unquestionable in the diagnosis. The nurse observed and then took care of other things in the room and out. I slowly used the syringe and that seemed to get liquid in better. I asked if there was anything else to do. She said to keep her hydrated and affirmed that kids get sick fast and better fast and would just turn the corner and later, that she probably responded well to being in the cool morning air. She thought and commented she was doing better but I perceived no change. I asked what I should do if she started choking. The nurse said to hold her like I was doing to feed her. Danielle struggled to get it down once while staying in the room. I asked a couple more questions and then before she left, I apologized and told her that as long as she could promise she wouldn’t get any worse, I would go home! She said respectfully that she couldn’t do that and would see if Dr. Tordtini could come back in. I tried to feed her a little more-- she was so tired from what seemed to being sick and from the eating process and with lack of food, she fell asleep during other attempts. Dr. Tordtini walked in and asked what I was feeding her at that moment. I said it was Pedialite the nurse gave me and he made a remark that I could have received flavorless instead. He told me it was important to keep her hydrated and to get Pedialite at the store. He offered to give a printout of information with what to do (looking it over, I had already done everything on the printout, including putting the head of her crib on blocks to elevate). The nurse brought it in and repeated that I could stay and feed her more here and (repeated also) to come back in a few days or see Danielle’s pediatrician then -the print out included coming back to be checked in two. Then a new emergency patient came. Being disheartened and tired, I opted to leave at that point. As I was buckling her in her car seat, the angle was unfavorable for breathing with her symptoms and she stopped mid breath. Her lips and the creases around her nose turned blue, skin around eyes pink, as I tried to get her back out of the car seat. I simply held her in my arms as directed and she momentarily took in air. I quickly put her in the seat again and stepped out of the room with her. I went to nurse Kelly at the E.R. Bridge (or equivalent) and asked two questions: if I could have a smaller syringe, and told her what had just happened-- I asked again how to handle the situation. She got me a syringe from another numbered room and asked if that would work. I told her that, “I know you are supposed to lay a baby down your forearm and do thrusts on her back if a baby is choking on food. What do you do if she is choking on liquids? –Or just can’t breathe?”
She said that she didn’t know what else to tell me. Just keep holding her (up in a cradled sitting position). I then took her home. I let Jake take care of her while I went to the store for Pedialite and necessities. Over the next three days, the rest of Monday , September 22nd-24th, I made goal of feeding Danielle 5 ml every two-three hours. Her symptoms remained the same, though becoming dehydrated. And in other words, I fed her every time she woke, and worked on giving that amount until she fell asleep. This was an exhausting effort for both of us. I used the bottle at first and it worked towards this goal as long as I squeezed the container so it would more easily come out with her oral movements, both tongue and biting. I was consoled with supportive people’s suggestions to help her get better (vaporizer, a very light application of Vicks, using the bulb syringe to dry and clear out her nose and throat) and that she would see Dr. Christian next. By the 22nd, I believe I stopped giving her milk altogether, as it proved harder to swallow/not as hydrating in the mouth. She slept in my arms or on my chest upright, which seems to help the most for the hardening drool in the back of her throat. At times, I used a bulb syringe to quickly suction said drool out. She would animatedly flinch if not gag (I did not notice the difference). To feed her, I cradled her with one arm/hand and gave her liquid with the other. To help her swallow, if she was caught on the action, I would then sit her up on my lap, her shoulder in to me, and held my hands around her chest cavity with very little pressure to assist or frame her diaphragm. I would be still and supportive. She had much calmer moments where I could lay her on the couch, and the late evening, September 23rd she more contentedly reached out to the side and played with a plush toy. She also had similar moments where she would reach and scratch at the couch fabric, my hair, etc. but movements were weak, matching the days spent waiting for this to turn the corner. I would describe Danielle’s condition at this time as a very subtle and steady decline with cyclic pardons of a bit more energy and debilitating weakness. Jake took a turn watching her at that time, and his method of feeding was more deliberate in coaxing a swallow. I think then, and before then, she had swallowed Pedialite the “wrong way” and worried she might get pneumonia. I also, having her in my shoulder as mentioned, would leave her chin down at times so she could be in position to throw nasal "congestion" and sticky drool out of her nose and breathe with less constriction. That night, she woke every 45 minutes and I fed her. Sleeping on my shoulder wasn’t a workable solution any more. I told Jake that I didn’t think she was getting enough oxygen. I would describe this as that she didn’t trust herself to fall asleep. I called the clinic the morning of September 24th, and they got me in with in the hour. My appointment was at 10 am, and while I got my older daughter and I ready to leave, Danielle slept on the couch. Since she didn’t wake up during that time I was very worried. In fact, I was going to call the clinic at opening, but we both slept longer than 45 minutes, just prior. This worried me! I took with me the instructions I got from the E.R. on the previous Monday, Danielle’s immunization record, I took hers, mine and my other daughter’s insurance cards, the thermometer to check accuracy, the infant Tylenol, the bottle I was using with Pedialite, and Danielle’s last two wet diapers (which were nearly dry, changed about every 10 hours, and one had a pink discharge). We waited in the waiting room for less than five minutes. The assistant routinely took her vitals and commented that she was looking sick. I got Danielle dressed again before Dr. Christian entered the room. Usually we exchange pleasantries, but she was asking questions quickly and gave her to me to hold on my shoulder and she left the room. She came back momentarily and said that she is going to the hospital and she is going by ambulance. She didn’t want to waste any time. She said that she wasn’t getting enough oxygen. I still even mentioned the diapers I had brought and tried not to think too much at that moment to make sure my two year old daughter would not be scared or react. I really was frantic and relieved that the situation was culminating.
She left again and nurse Judy came with oxygen for blow-by. In another moment, the paramedics were there and asked some questions. I held Danielle until we were on the ambulance, what belongings we had were carted on the bed. The ambulance ride was about one minute long and they too had her on oxygen with humidity. They did not put in an I.V. since that would require using a bone in her leg. The EMT gave Allison a toy.
Once in the E.R., they noticed right away that she wasn’t crying. As they did their initial work, I saw that it was time for her to be fed again. She was not being hydrated with medical equipment at that time. She didn’t move as they did a spinal tap and as they were explaining things to me, I nodded. Sue, a Radiology nurse was just running down an item to start and I.V. needed and she happens to be a lovely acquaintance of mine. She helped explain a few things, upon seeing her, I started to cry. I was feeling overwhelmed by what was happening but feeling successful and relieved. I believe Danielle was also- we two relinquished to this medical attention. Sue helped make arrangements for the day with mutual acquaintances for Allie. After this daughter was out of the E.R., I showed the printout I was given the first time to Dr. Wallace, Dacia and Eric. Apparently Dacia was assigned to Danielle for the day. This had become a significant medical case. Dacia was excellent help and consolation as her senses were keen being the mother of very young children. I asked a lot of questions as the day progressed and tests and x-rays were out. As they took the spinal tap; Danielle didn’t fuss. I stared at my shoes or closed my eyes for much of that part. I have since thrown away the shoes. Dr. Wallace explained everything that was happening. Dacia confirmed that if I knew something was wrong, that I should have come back that day, or been more adamant. This is true, but that is what I thought I had done to extent and I knew they wouldn’t send me away, of course, knowingly. There was a decision to be made about what to do next since she seemed stable and had been diagnosed as having pneumonia. She would be sent to the Pediatric Unit, more likely the Intensive Care Unit, or sent to Seattle Children’s. Sue also asked if I was happy she was here, and I said I was glad and I knew it was a good place to be, but she then specifically stated that she meant this hospital (OMP) instead of Seattle Children’s. She would “send her over in a heart beat” and use their resources. It was decided that since her lack of rousing was a symptom that wasn’t adding up, that she could have more than pneumonia and Dr. Harrington of the Peninsula Children’s Clinic confidently stated that was what the x-ray showed, but they would take her to Seattle, also. The trip coordinator said it would be thirty minutes longer to wait if I flew with Danielle to Seattle (we waited in any case behind a cardiac patient needing life flight) so she was taken to Children’s in the early evening, Thursday. My husband’s parents from Tacoma drove up to meet her there in Seattle. My older daughter, husband and I took the fairy from Bainbridge, though upon arrival, we saw the 7:10pm preparing to pull away (we were given a priority fairy pass, but wasn’t accepted). During this time, my father-in-law went back and forth with us and the Children’s team with questions, intermittently. The medical team first asked when she last stooled (about a week). And several minutes later, there was a call to ask if she had been given honey. In fact, I had not and do not give any to her sister because I know the risk and didn’t want a two-year-old to pick her sandwich apart with honey on it. They asked about construction (there was road construction behind our fence line, but that was irrelevant). I was trying not to think about the effects they were referring to for an infant until I could at least be with her again. While the team at Children’s conversed possibilities, they asked my father-in-law about pesticides, also. The most probable diagnosis stemmed from the following: Pesticides: my father happens to farm grain and potatoes, that I lived on a farm, we visited Idaho earlier in the month, we got back a two weeks ago, she hadn’t pooped in at least a week, she seemed to get sick about a week after returning, and considering her hypotonia, flat affect, and altered LOC, was sent to the Pediatric Intensive Care Unit for botulism, contracted by ingesting botulism spores on dust in the air. (One nurse compared it to the lotto and suggested we got a ticket--a little irreverent/jarring, as we were certainly still coping.) She showed six of eight symptoms classically associated with the disease: weakness or floppiness, poor feeding, constipation, lethargy/decreased activity, weak cry, and respiratory difficulties. The two symptoms not presented were irritability and seizures. An order was put in right away for Baby Imuno Globlulin which is only available in Los Angeles at the California Department of Public Health (IBTPP). That arrived the next day and was given September 25th, one dose around 4 pm. A stool sample was diluted with water and extracted and results are pending*. Baby BIG reduces the hospital stay/potentially speeds the body’s recovery for infantile botulism. We were invited to Rounds as parents of the patient to listen and ask questions each day. It was also contributed by my father talking to Jake upon hearing the percieved diagnosis, that local TV news stories told of thousands of birds dying in the South East Idaho and Salt Lake Valley of botulism. Some doctors said that might increase the botulism available to be ingested via bird stool on the ground, others thought it as complete irrelevance. Danielle “bounced back” a bit from being hydrated (dextrose, sodium, potassium) even before/during the admistering of baby BIG. Thus, the following concerns have been what her base line really was, the acceptance of Baby BIG without side effect, and being able to protect her own airway. She was not put on a ventilator at any time, but breathing was labor intensive. After noting tolerance of BIG, she received a feeding tube September 27th and the ratio of breast milk to Infamil formula was about 1 to 4- as soon as an ND tube was placed and after the 15 bottles of stored breast milk were given (continuous feed, by ND tube and was slowly increased in amount). Her IV site was completely removed September 28th as it hadn’t been used for several hours (the day we were moved to General Medicine from the PICU). She, between September 27th through the 29th, had been able to lift up her arms and loosely coordinate touching toys, move her legs, adjust her shoulders while lying, and making faint cooing type noise, bringing things to her mouth, crying somewhat but softly, and sneezing seemed more than a faint extra breath out. She was able to begin handling her own secreations. Her smiling was the first thing to come back. She was held by me every day possible but uncomfortably so; not only due to the monitors and cords, but muscles her entire body over were completely “relaxed” and she couldn’t draw herself in well. Nurse Abby moved us to the other side of the room with the window after asking. By the evening of the 29th, she being held on my chest, could slowly roll her head from lying on one side to the other using her forehead. September 30th she was moved to an ND to NG feed – after she’d almost pulled (once doing it completely) out of her nose to the NG position anyway. Note that the feeding tube has proven difficult to place as she can’t swallow and several attempts have been made and precautionary x-ray taken to be sure it was in the right place after initial placement and x-ray. The daily NG position test works with air but using the weighted ND tube positioned as an NG, no fluid can be drawn back by syringe. Progress continues rapidly. She was able to move her head deliberately side to side lying down in the crib (30th), and neurologists and physical therapists have tested her ability nearly each day. To complete her recovery, she needs to be able to create negative pressure in her mouth. She has also been able to draw her arm and upper torso across her when her hips are turned manually, in the same direction. By the evening of the 30th, after being rocked and held cheek to cheek, Danielle could create for the first time slight negative pressure as she pressed her mouth wide open on my cheek.
She has trouble stooling since contracting Botulism and a stool softener and laxative (Miralax) has helped but not yet regularly. A suppository was added to this maintenance regiment. She needs to adjust to being formula fed for the first time, also. I received more than three days of meal vouchers in the cafeteria as a nursing mother and was given a double breast pump in the room, 21 mm flange attempting to pump every 3-4 hours.
I have thought to observe that the dehydration may have made an non-ideal environment for the botulism and assisted in her condition being not as lasting or severe. Jake and I had observed in Idaho that she was perhaps going through a “growth spert” at that/this time. This perhaps had both delayed symptoms and severity and contributed her recovery.

Danielle’s quickly recovering body must do two things: remove all the botulism toxin and repair irreversibly damaged muscle receptors so that they can receive brain signals again (be able to coordinate sucking and all other movement, voluntary and involuntary).
*October 1st, the lab results came back negative for botulism, 5 days had expired. I contributed at Rounds that a stool sample was very diluted (enema) and additional water was administered to get the required sample amount for lab (Though that shouldn’t likely make a difference). Since she seemed to respond well to the Baby BIG and has regained strength in an ascending order (lost strength perceived in descending order), the Perceived Diagnosis hasn’t changed. The test will be done again now that she is stooling with a regiment and with probability of a false negative. Danielle will receive and unofficial schedule for Tylonol. She will also be seen every day by Physical Therapy; one therapist has experience with botulism and expressed a plan for very slow rehabilitation. She has been monitored by Resident Doctor Sam Whittkind. Nearly each nurse has added something to her comfort and care by little actions and resources. Over all, I think we’ve proved to medical professionals to be an exciting and rewarding case. I asked Danielle to and she did, smiled and waved goodbye to all the PICU team as we wheeled by, “graduating” down to the general medicine floor after just two days of treatment there. I AM SO GRATEFUL AND PROUD OF DANIELLE’S ABILITY THROUGHOUT THIS ORDEAL.