Ainsley was in the hospital for four days last week. I journaled about the whole experience, but will shorten the story a bit here ...
She had strep for a week or so, and had been on amoxicillin. But her fever kept spiking, and she complained of a sore throat constantly. She wasn't eating, and she was sleeping a lot. In general, she was miserable. Occasionally, though, she'd feel better and act like herself, even feeling up to going to the playground on Friday.
Then on Sunday, (May 18) we went to a friend's high school graduation party, and at the party she wouldn't eat and got really fussy and whiny. Her fever spiked again.
At home, she snoozed on my bed for awhile, intermittently waking to whine and fuss. Around 10 p.m. I noticed that her neck was very swollen across the front. I Googled for possible reasons, and came up with nothing but scary things. It wasn't swollen at the lymph nodes, but across the front of her throat. I wanted to take her to the ER, but knowing that the docs at the local ER would likely just dismiss my concerns, I waited until morning.
Monday morning, May 19, I got up and called the local clinic as soon as they opened. I explained the problem and asked to bring her in, since the PA there had already been treating her strep. They said they had no openings, and when I insisted that it was emergent, they said they could "work me in around 2:00 this afternoon, but you might have to wait." Uh, thanks, but no thanks. So I called the clinic in the next town over, and they said to bring her right in.
The PA there acted kind of odd. He called me her grandmother THREE TIMES. I so do not look like her grandmother. Ack! But he was very concerned, and called a pediatrician in L-town (bigger city to the south), who said to bring her right there. The PA told me to get her there immediately, so I swung by the house, picked up Mark and the kids, and quickly packed a suitcase. I called my friend Suso to get all of our friends praying, because we were frightened.
We got to Dr. Pediatrician's office and he saw us right away. He was very concerned also, and explained that the swelling could cut off her air supply and we needed to take her to the hospital for immediate admission. This, by the way, is the hospital where all five kids were born, and we've always gotten excellent nursing care there before.
We got to the hospital shortly after 11 a.m., and then mostly sat in a room waiting, with five kids -- one of whom was miserable -- until 6 p.m. Then Mark had to take the other kids back home, as Hope had a band concert at 7 p.m. (and this was 40 minutes from home). We still hadn't seen a doctor that the pediatrician had called to consult. They said she would be there by 7 at the latest. We did get an IV in, and Ainsley had a CT scan done, but most of those hours were spent sitting in the room, with her crying and begging for something to drink -- which the nurses refused, as they were waiting for doctor's orders. They wouldn't even let her have an ice chip or a washcloth to wet her poor little chapped and peeling lips. :( It was truly heartbreaking to hear her cry, "Please, Mama, please, can I have a drink?" They gave her a Tylenol suppository around 3:30 for her fever, which was 103 degrees, but it did no good.
About 7:30 Dr. Surgeon arrived. She said the swelling was too diffuse and there wasn't a distinct area to the mass, so she wanted to give more IV antibiotics (Rocephin) overnight and would be back at 7 a.m. to reassess. She said Ainsley could eat warm, soft foods and drink warm beverages until midnight. So, I went to get her something, and the nurse said the kitchen was closed. I finally did convince a nurse aide to bring her a bowl of chicken noodle soup from their little kitchenette on the floor, as well as something to drink, and Ainsley ate the entire bowl, drinking the broth through a straw. Ainsley was up all night, with pesky nurses and nurse aides poking at her. No one brought me a blanket, food, drinks, or anything else. No one asked, "Do you need anything?" Around 10 p.m. I finally asked someone for a blanket and tried to get a little sleep in the recliner between Ainsley's restless periods, but to no avail. (And she had to get a new IV in the other arm at 11:30 when the first one came unthreaded).
Dr. Surgeon came back around 7:30 a.m. and said the mass was softer and she would do surgery. The nurses came in and said the OR was booked so we would wait until the afternoon. An hour later, a student nurse asked me to give her a shower, which I did. As soon as she was bathed, the OR team came in to get her! Since this was 3-4 hours earlier than expected, Mark missed the whole thing -- he was at home with the other kids. They asked me to carry her down two floors to the second floor OR Holding, and the first people I saw there were the nurse anesthetist and anesthesia technician who did my spinal with Ainsley's c-section. I remembered them by name, and they were impressed. :) They are great ladies and I was pleased to see them. They gave Ainsley some Versed to relax her, as she was VERY agitated and frightened, and she then went to sleep. The anesthesiologist that I despise from previous births, Dr. Horrible, came over to get consents, and decided to take Ainsley's case himself. He is a competent doctor, even though his bedside manners stink, so I gave him the consents and held Ainsley's hand until they wheeled her in to the OR.
A tech took me to the waiting room and I was there about 35 minutes before I heard a scream and knew it was Ainsley. A few minutes later a nurse came to get me, and I was taken to Recovery to help calm her down. She was distraught and disoriented, but also making a lot of sense.
(Nurse: "You'll be OK." Ainsley: "NO I WON'T! YOU HURT ME! I HATE YOU!" Me: "Shhhh, don't cry, Sweetie; it will hurt your throat more if you keep crying so hard." Ainsley: "I CAN'T STOP CRYING!")
It would have been funny if I hadn't been so worried. A nurse gave her Demerol and she snoozed again. Dr. Surgeon came in, and told me she had drained 3 tablespoons (about 25 milliliters) of pus from her neck. I didn't know at that time that it would be the last time we would see Dr. Surgeon. (By the way, she is a plastic surgeon, and chief of staff at the hospital).
Tuesday evening, Ainsley's fever broke. (She had a fever for a week and a half from the strep, so this was great!) She slept and slept and slept. And I got labeled as an "uncooperative" mother in her chart because I refused to let an aide wake her to ask if she wanted something to drink, and then I refused to let a nurse wake her to see if she needed to pee. Hello? She needs the sleep. She has bags of IV fluids running into her, and I'm not waking her to see if she wants a drink. She has a Pull-up on so if she needs to pee, she will. Leave my kid alone!
That night, a nurse aide brought me a blanket and pillow. They also fed me three times. :) Hallelujah!
Wednesday morning, the nurses said that Dr. Surgeon had left orders for them to teach me how to change Ainsley's dressing, ostensibly so she could be released that day. I helped do it the first time ... and this was when a glob of tissue came out of the wound with a bunch of blood and pus, and the nurses freaked out. So did I. They called three more nurses and Dr. Pediatrician, who came in and said he was pleased with her progress. He said he wanted to dismiss us, but needed Dr. Surgeon to look at the wound first to make sure there wasn't a problem after the tissue thing.
Dr. Surgeon never showed up. They kept telling us she was out of town, but would be there in the evening. I changed Ainsley's dressing a few more times, and it was getting better -- less drainage every time. She didn't nap at all on Wednesday, and was a BEAR. She told pretty much everyone in the hospital how much she hated them all. She was impossible to please, even though the nurses on Wednesday were MUCH nicer and more attentive. Twice she lost her IV and we had to rethread it both times. This is not fun with a 3-year-old, by the way. She had screaming fits dozens of times.
Mark and the kids came to pick us up in the evening, but Dr. Surgeon never showed up. He waited until 9 p.m., and then went back home. (With gas at $4.04 a gallon, this ticks me off, too.) I was out of clothes, and Ainsley was out of underwear. Argh.
On Thursday, Dr. Pediatrician came in around 7:45 a.m. and seemed surprised to learn that Dr. Surgeon had never showed up. He said he would give her a call to come and look at the wound, and then we could go. "Give me about 10 minutes to talk to her, and then you should be able to get ready to be dismissed," he said.
At 3 p.m., I still hadn't heard back from anyone. I had gotten progressively more pesky with the nurses. I threatened to leave AMA when they put a new bag of IV fluids on at 2:30 p.m. (I forgot to mention that Dr. Surgeon had ordered the IV removed the day before and just a hep lock for antibiotics, but that the nurses were confused and wouldn't remove it until they got to see her, and ... she never showed.)
Ainsley was eating and drinking just fine. She was using the toilet a lot. There was no real need for the bags of IV fluids, except to annoy her greatly. So anyway, at 3 p.m. we got a new nurse, a guy named Chris. (Ainsley had told him the night before that she hated him, by the way, when he had to rethread her IV). I told him that we HAD to go home, that I had four kids at home who needed me, and that he needed to DO SOMETHING NOW. He agreed that the hospital wasn't doing anything for Ainsley that I couldn't, and called Dr. Pediatrician's office.
Dr. Pediatrician was shocked to learn we were still there. He had called Dr. Surgeon at 8 a.m., and she had promised to get right over there and dismiss us. He apologized profusely, and told Chris to let us go if we promised to take her to the local hospital every day to have them change the dressing. I said, "Why should I do that when I am the one who has been changing it here?" So he called Dr. Pediatrician back and told him that, and neither of them had realized I was the one doing it -- the other nurses had just written "dressing changed" and didn't note that the UNCOOPERATIVE mother ;) was doing it. So, he apologized again, and said to let us go. i called Mark, and he was there within 45 minutes to pick us up.
I know doctors are busy people. But come on. Two extra days she left us sitting in a hospital with not even a phone call to check on her patient? That is ridiculous.
Now, the "why it happened" part, since everyone, including the nurses, asked that question. Dr. Pediatrician explained that rarely, an infection of any kind goes bloodborne. Like, perhaps when she coughed, it weakened some blood vessels and allowed the Strep to enter her bloodstream. It localized in the neck. Sometimes viruses or infections localize around the heart (myocarditis) or in other remote areas. He had a kid last year with bronchitis who developed an abscess on his hip! So we were lucky in that it localized in a spot that I could see and caught it rapidly. He said that it was a freak occurrence and we don't need to worry that it will happen every time she gets strep. He explained that the urgency in getting her to the hospital was the worry that 1) it would continue to swell and cut off her airway; and 2) it would rupture and drain into her trachea and down into her lungs, both of which were VERY BAD scenarios.
I'm grateful for Dr. Pediatrician, who was really great and who answered all of my questions kindly. And I'm grateful for some of the nurses who made our stay easier. I'm especially grateful for the myriad of friends, especially those from the NFP Board, who prayed for Ainsley.
