I don't know why I had never heard of this before my daughter was diagnosed with it. It is something that can apparently just "happen" and is fairly common in babies aged 5 mos. - 10 mos. and can be fatal if untreated.
The symptoms are confusing and hard to put your finger on and it is right in the prime age range for teething behavior which is a catch-all for fussiness and many other "off" behaviors. It is also supposed to be more common in boys than in girls.
I knew something was wrong, but I was still worried I was overreacting and our trip to the doctor was going to end up just as something to reassure me that nothing was really wrong. I am a stay at home mom and I spend all day every day with my daughter. For parents out there who don't have the luxury of that much time with their little one, I would think the symptoms could present for much longer without alarming anyone. The longer they go untreated, the more complicated correcting the problem becomes. Several of the typical symptoms never really happened with our daughter. She wasn't curling into a ball when she was in pain and didn't have a distended belly or seem to mind when her tummy was palpated. I think I caught it early enough to pre-empt the bile/waste symptoms. I know that not many people are going to read this, but I hope, in some small way to help expose this condition so that it is more well known.
Ok, so I'm really sorry for the length of this, it's something I wrote for myself so I could remember all the details in years to come.
Dorothy's first trip to the ER
We had gotten back from a visit to Houston the previous evening. D went down for her morning nap, waking around 11:45 am. I've been working on doing regular solid food meals with her, so instead of nursing her right away, I put her in her high chair for some finger food. She ate a little, then wanted out of her seat. Bryan and I were working on a grocery list and we let her play and crawl around. She got a little fussy, so I figured she was still hungry and wanted to nurse. She didn't really seem to take to it though and would pull away and cry, which was a bit unusual. Her fussiness was escalating somewhat and we were both focused on cheering her up. We took her into our bedroom, checked her diaper and tried to play with her, but she kept crying again even after distraction. I resolved to take her in the shower with me, which has always been very soothing for her. We went in and she settled for a moment, but soon started crying and struggling in my arms. When she wasn't doing that, she would lay her head on me and close her eyes. I said that I thought she was in pain, the way she was crying and struggling was the same as when she had gotten something in her eye, but her eyes didn't seem to be the problem. Bryan asked if I thought she was teething, but I had no idea because she has shown signs of teething off and on since she was 4 mos. and still had no teeth at 8 mos. She was acting very sleepy though too.
We thought it was unusual for her to be so sleepy right after a nap, but thought maybe she wasn't feeling herself yet since the road trip and put her down again. She seemed fine to go back to sleep. I went to go put my clothes back on and was listening to the monitor. She soon got upset again and was crying. I went in to look at her and found her writhing in her crib, just like she had before when her eye was hurting her and I knew she was in pain. I picked her up and saw a baseball sized wet spot with a little chunk of food in it and could smell that she had thrown up a little. Bryan was there too and she swiftly went from crying and struggling to going limp in my arms and looking asleep. She also was very pale and her head felt clammy. I was alarmed, especially by her listlessness, and said that we needed to go to the doctor and was even wondering if she was having an allergic reaction and whether we should call 911. It seemed like her condition had worsened so quickly that I was holding her close so I could make sure her breathing was okay. She only had a diaper on, so I wrapped her favorite puffy blanket around her to keep her warm and waited for Bryan to talk to the doctor. It was a little after noon and the office we normally went to only had an appt. for 3:30, I balked, and Bryan told the doctor that I felt that it was more of an emergency situation than that; they offered up the other office with an appt. time of 2:40, but that we could go right away and they would see if they could fit us in.
We packed Dorothy in the car seat, she was limp and sleepy and pale. I could really tell she was pale because the normally quite pink soles of her feet had lost their color. She has quite fair skin and it was a somewhat subtle difference. Every once in awhile during the trip she would wake up and look at me and seem just a little sleepy, but otherwise good, but she would also whimper and sometimes burst into crying again, then fall asleep just as quickly. I kept my fingers on her tummy to make sure her breathing seemed normal. We got to the office and I bundled her up and held her close. People kept getting called before us (because they already had appointments) and I was freaking out just a smidge, feeling like no one was paying attention to how dire my baby's state was. When she would struggle in my arms and cry because she was hurting it was all I could do just to hold on to her and keep her from falling. She did lay still (too still) a lot though. While we were waiting she threw up again; this time much more than before, there was breastmilk and fluid and chunks of food all over me from the top of my shirt to the bottom of my shorts and through to the chair. A little got on the blanket, but it was all we had to put her in, so we had to keep using it. We apologized to the other mom sitting in our area and moved our stuff to the "sick cowpoke" waiting area. She was so tired and very unhappy.
They finally brought us in and we were seen by a nurse and a trainee. I was a little miffed at getting a trainee for what I perceived to be such a serious case, but was calmed also by the fact that they weren't acting too alarmed. The nurse kept commenting on how pale she was and when we brought her out to be weighed, she asked the others if they had ever seen a baby that pale, none said they had. When I put her on the scale she just laid there flat out and didn't move. She weighed 14.5 lbs. A little bit less than she had the previous week. The nurse also put a monitor on her to measure how much oxygen was getting to her blood because of the way she looked. A good score was 90 and Dorothy measured at 98, the nurse was really surprised because she expected that to be an issue because of her color. We had to wait a little while longer for the doctor, but not too much. She agreed that Dorothy wasn't acting right (she never saw her in her pain mode) and didn't look right. She ordered a blood test. Dorothy never ran a fever and her blood test was inconclusive, it wasn't quite normal, and it could be just the beginning of whatever was happening in her system. Dr. Thorstad was still concerned and said that Dorothy was a bit of a puzzle and that she didn't feel okay just sending her home, even though she wasn't sure it was something serious. She did mention intussusception as a possibility, but wasn't positive. She said that she could do a urine test there, but that she felt like she might need more bloodwork and possibly a procedure if it did turn out to be an intussusception. She advised us to go ahead and take her to the ER because we could get everything we needed done there and it would be the best way to figure out what was wrong. She sent us to the ER at the Dell Children's Hospital.
We got to the ER and there were no close parking spots, we had to walk in the hot sun with Dorothy covered by her blanket the whole time. I walked quickly. The ER waiting room was gross and chock full of germy kids. Many people were wearing masks for protection because of the recent flu outbreak (H1N1). There was an older girl sitting in a wheel chair near the door waiting to be seen who was sobbing and crying that her stomach hurt. It was like a scene from a movie. The lady at the desk also did the monitor on her to check the levels of oxygen in her blood right then and there before we waited at all because she was concerned about her color. It was over 100 that time (even better!). I was relieved because everyone we saw told us to wait somewhere besides the waiting room. I stood outside in the foyer while Bryan waited inside for us to be called. Dorothy had another pain episode and then threw up again; it hit one of the glass panels of the doorway. I told someone about this, but no one came to clean it up that I saw. Fortunately, it wasn't that long a wait.
We were brought into triage and the nurse checked her over and took some blood for another test. She fumbled with putting the band-aid on Dicey's toe and was having a little difficulty getting it on quick enough so that the blood didn't get everywhere. She said "and here I was afraid that you wouldn't bleed" (another person convinced that her paleness was a major problem sign). She also weighed Dorothy and she just laid there again. She processed all Dorothy's symptoms and said that someone would be seeing us soon. We waited again, but not for long.
We were taken into a room. The nurse there had a 10 month old girl at home and agreed that Dicey didn't look well. She did keep saying how gorgeous she was and how she just couldn't stop looking at her though. They gave us a little hospital gown, but it was more for a child than a baby, so we just laid it on top of her. She just laid on the gurney, all splayed out and still. They put the little monitor sticky things on her chest, a tiny blood pressure cuff on her arm and a red light thing on her big toe. She had many cords running off of her that we kept having to maneuver around as we switched from me holding her to her laying down and her having things done to her etc. The nurse said they were very busy, but that she had been classified as acute, so we would be seen by a doctor soon.
Bryan made some calls, we waited, a doctor came and saw us and was able to see one of her pain episodes and seemed to think right away that it was likely to be an intussusception as well, especially when I explained how she was vacillating between all these different states. We waited. Two nurses came in and tried to do an IV in her hand, but ruptured the vein, rendering it useless as a port for medicine, they brought back our original nurse who did an IV on her other hand and taped it all up so that she couldn't move her hand. She threw up again while being examined and the doctor ordered her to be given medicine for the nausea and to be put on fluids. She hadn't eaten in awhile and they didn't want me to nurse her. She had to have some urine taken via catheter, which she didn't like at all. The nurse who took that was sure that the white blood cells that showed up in her urine meant that she had a urinary tract infection.
She had to have X-rays of her tummy. They did one of her lying on her back and one of her on her side. She didn't like them. I was able to stay with her and had to wear a lead apron. Bryan had to sit in the room outside.
We waited. The doctor came back and said that the X-ray did look suspicious for an intussusception and she was going to go ahead with ordering the air enema procedure to hopefully correct the blockage. We were going to have to stay overnight afterwards for observation to make sure that it didn't recur. We got the Bears on board to bring us some food and essentials.
Around 5 or 6 she got the procedure. I was able to hold her and sit on the gurney while they wheeled us really far to the procedure room. People were all looking at her and saying how cute she was.
They had to strap her down to a little board with three big velcro straps all down her body and put a big tube in her bottom, taped her butt cheeks together real good and then put air into her. They had an X-ray going during the procedure so they could see what was happening. There was a risk of rupturing the colon, in which case she would have to be rushed to the O.R. She would also have to go to surgery if it relapsed after the procedure. I had to wear another lead apron and I had to step a little farther away from her so I could only hold her hand and reach to touch her. Bryan was with us in the room, also wearing an apron and holding my hand. It went well. I was concerned because she looked like she was gagging or seizing or going to throw up or something, but they told me that was just the air coming out of her. They unstrapped her and took the tube out and she farted really big a few times. She already seemed to feel a little better, especially considering what had just happened. I held her and got back on the gurney. We were wheeled back and she started crying a lot when she had a bowel movement, not really calming down afterwards. I was a little worried that it was happening again, but they gave us a pacifier to help her pain management. The nurse wanted to put sugar on it, but I told her to try it first without. Dicey had been fine with giving up her pacifier at 5.5 months, but still liked to suck on her stuffed animals. She took the pacifier right away and seemed more soothed with it. I would've like to let her comfort nurse, but they didn't want anything in her system.
She pretty quickly went to sleep on me. The Bears came with chinese food and Max. The nurses brought some toys for us while we waited for our room. They were really backed up and didn't have many rooms to spare. We ate, Dicey woke up and seemed happier. She played with the toys and Max a little, but kept just wanting to be held, which was fine with me. She was really enjoying her pacifier too. They brought me a breastpump in case I wasn't able to feed her and needed to express some.
We went to our room and the nurse took her vitals and measured her at just over 28 inches. Dicey had some angry red marks on her arm from the last cuff and didn't like her club hand with the IV port still in it. We were able to take the band-aids off though, and she didn't have any more hookups to machines. She rested pretty well when we first got there, still pretty out of it and exhausted. Celena and Jack stuck around for awhile as these new doctors (another trainee!) came in and asked us a bunch of questions, saying they didn't know anything but her name. It was taking awhile, so we sent the Bears on their way, Jack was going to come back later with a few more items for us. It was past her bedtime already and she was getting more and more fussy, even though she didn't seem to be in pain any more. I asked and the doctors said it was alright to nurse her, I was so happy to be able to feed and calm her. They also said that they would follow up with us to get us all the results from her tests and answer questions and check up on her. We thought the fold out couch would be only big enough for one person, but it was fine for the both of us, so we told Jack he didn't have to come back with a cot and could just stay home. We put her down and she went to sleep fine, she kept getting woken up, however, by people coming in to check her vitals every few hours. We had to write down all her feedings and weigh all her diapers. She had a hard time settling back down once she got woken up because we were right there next to her. I nursed her a lot and held her a lot. None of us got very much sleep.
She woke up right on time and I was able to order breakfast because, even though I wasn't a patient, I was her food source, so they had to keep me fed. The food was perfectly respectable. We kept trying to get her to sleep because she hadn't gotten a full nights rest, but it was difficult. I was able to rinse off from the previous day of having been vomited all over and put on some clean clothes, courtesy of Celena. Bryan went out to try and find some more diapers of a certain brand because she was having issues with diaper rash that we were concerned may have been a diaper allergy. I laid down with her and nursed her to sleep in my arms, trying to get some sleep too. We got about 30 min. when Celena called the room and woke us up. Bryan came back with magazines, but hadn't found the brand of diapers we were looking for. We used the hospital ones. We tooled around, just focusing on Dicey. We went to the gift shop and bought a mama and baby lamb figurine set and a pig stuffed animal that fit her preferences. We found a board book from the Half Price book cart and they brought us some little toys too. We also visited the playroom where the staff was just wonderful and we played with a keyboard and blocks and cars and soft bowling pins. Even with her clubbed hand, Dicey was having fun. There was a lot to look at, it was raining, so we stayed inside. She liked finger walking down the long hallways. The ladies in the gift shop all oooed and aaahed over her too. We met a little girl there named Grace that was having a much more difficult time than Dicey, whose parents were very nice and friendly, saying how good Dicey looked, how she looked ready to go home. (There but for the grace of God go I).
A doctor came and saw us in Dr. Thorstad's stead and said that we could go home, that he didn't think we needed to wait the full 24 hours in the hospital, that he knew we would do better with the comforts of home and some good rest. I had already ordered lunch, so we stayed for that, which was timed well for all the discharge stuff and them finally taking out her IV port. She didn't like it being taken out, but was so happy to have her hand back. She looked at it and moved it around for a little while afterwards.
We got all packed up and walked out to our car in the sprinkly rain, so happy that our little girl was on the mend and not hurting anymore. She took a nice long nap right away when we got home. We rested and had Popeye's chicken that night while the Bears and Zoe, Marc and Alden came for a visit. Dicey went to bed early and woke up right on time the next morning. She seemed a little more insecure and needy the next day, but who wouldn't?