Emma's Appendix

Emma's ruptured appendix - 11 days to diagnosis
There is a fever every day, though I haven't listed them all. We spoke to PA clinic advice nurse at least once per day during this period.

Wed 7/25
Emma is presenting fever at 4PM, but Steve is hanging with Emma. Steve takes Emma to dinner w/ his mom, who diagnoses a fever upon visual inspection.
103
Emma is super clingy at nite. Will only sleep in big bed w/ J. This lasts for a few days.

Thurs 7/26
Emma complains of stomach ache. Lies on the sofa watching TV. Fever brings with it a headache. Emma is most comfortable with her head flat on sofa.

Fri 7/27
PA clinic docter #1 suspects a nasty 6 to 8 day viral infection which has been going around. Strep is also a suspect. We take a culture.

Sat 7/28

Sunday 7/29
Emma barfs on the half hour from 5PM to 2AM.

Mon 7/30
Emma takes in something like 12 oz of liquid. Not feeling super great. We had rented some new kids videos by then. Emma watched more TV over this period than she had over the rest of the year.
100.8

Tues 7/31
Emma eats better.
J reads child's guide to symptoms, believes appendix may be the problem.
Emma visits PA clinic doctor #2. Urine sample is taken. The results from this test are never found. Doctor #2 believes if Emma had appendicitis, she'd be in severe pain even with Motrin administered. It turns out that this statement is more true for 5 year olds and above.
Chat with Steve's nurse sister Diana helps steel us to advocate harder for Emma with the doctors. A 7 day fever is pretty concerning in a child.

101.7

Wed 8/1:
103.3 temp
We are now more regularly dosing Emma with Motrin and getting good results in lowering fever and making Emma happy. We are not waiting for symptoms to arise. Just going with every 6 hours.
Emma visits PA clinic doctor #2. Provides 2nd urine specimen. Quick 20 minute dip test indicates bladder infection. Antibiotics prescribed. Parents relieved.

Thurs 8/2:
7AM 102.7 - but the amoxicillian isn't supposed to work this fast
5PM Emma is talking, playing, and happy. We are encouraged.

Fri 8/3:
Emma is still complaining about stomach pain. She is bent over slightly while walking. She feels good enough to play monster chase at times.
101.6

Sat 8/4: J chats w/ PA clinic on the phone. Fever is at 101.5, so after 72 hours, amoxicillian has not helped. PA clinic tells us to come in.

4:45 Emma visits PA clinic doctor #3. Appendicitis is suspected. Emma sent to Stanford Emergency.

7PM, Emma goes to Stanford Emergency for blood work and cat scan to verify whether she has appendicitis. In order to draw blood and to squirt some cat scan image contrast enhancing liquid in, they need to get an IV needle inserted. 4 unsuccessful tries were made over the course of 80 minutes. Emma gets pinned down, they stick a needle in, Emma screams continually, they poke the needle around. This procedure is at least as hard on Janis as it is on Emma. It might possibly be argued that ER folks are more experienced with mature veins than with youngsters. Same goes for bedside manner. There were 3 separate teams that tried to put the IV needle in. The first 2 teams left shaken by the experience. And then we'd be sitting there with no feedback for 15 minutes until the next team showed up. The third team used Lydocaine to dull the pain on the skin before attempting a needle stick. As far as I can see, Lydocaine does not lesson the pain, but does add additional needle sticks (3) to the process, further traumatizing E. The third team did draw some blood, but they couldn't get the tap properly functioning. So we pull this IV needle out.

Emma's fever hits 104. Motrin administered and brings it under control.

Stanford ER argued for a cat scan without an IV and without contrast solution - so this would be a way for them around the problem of not being able to find a vein. I indicated dissatisfaction with this course because there was a solid chance we'd get no useful data - we'd just run more time off the clock and still be right back to needing to stick an IV needle into a vein. A nurse from the children's hospital was summoned and she got the IV in quickly.

Cat scan shows abscess the size of a tennis ball. Appendicitis is confirmed.

1AM: Emma goes to Stanford Children's hospital. Has a nice, quiet room with no drunken emergency patients screaming the F-word while being restrained. Emma in good spirits. Had been making some jokes. Steve goes home, comes back with food and a list of stuff. J sleeps in the room's parent bed. E went to sleep at about 2PM.

http://my.webmd.com/content/asset/adam_surgery_appendectomy

Sun 8/5:
Award winning pediatrian and high school chum Doug Kaye says Stanford Pediatric Surgeon Smith is the tops, so we'll be in good hands. He's performed 500 of these surgeries.

10AM Surgery starts. Emma not too happy to separate from mom to go into the operating room, but nothing another IV dose of tranquilizer can't mitigate.

Surgery goes well. The main thing is to vacuum up the mess caused by the infection. Things are pretty clean in there now. Now Emma's immune system and antibiotics fight off the remainder of the infection. If things go really well, she goes home in 5 days. Otherwise maybe in 7 days or more. Can't tell how things are going to go.

Emma was freaked out upon waking up after the operation, especially since she has 3 tubes (nose, chest, you know where). Being cranky is pretty normal. Then she went back to sleep. We moved her from the recovery room to her bed. She stayed pretty calm. Watched a video. Then took a nap. No need for morphine, pain is pretty OK.

Evening:
She had a decent night last nite, but they come in every 60 minutes and she was afraid each time. She has 3 tubes in her and they are always squirting something. So the whole experience has been pretty traumatic for her. But at times she's pretty happy too. With each day I'm hoping for a little progress, a little less pain, beginning to take one of the tubes out, maybe getting out of the hospital room for a short while, having fewer interruptions during the night. Morphine is helping her to sleep.

8/6:
Emma has been sleeping most of this AM. Mom is keeping interruptions down.
2 out of the 3 tubes, the nose tube and the catheter have been taken out, which is great! Her recovery is tracking well. She still hasn't proven that she can take liquids via her mouth & keep them down, but that is the goal. She really wants some ice cream.

Her temperature has been consistently just a bit below normal, which we think is good. We had been told to expect a roller coaster fluctuation with even worse fever than we'd had before. So this is an argument that the infection isn't so bad.

8/7
Emma is doing pretty well today; though still not herself. Very quiet. Emma barfed 5X today because her bowels haven't started back up yet, which is pretty normal. 15% chance she'll develop another abscess and get another round of surgery. We should know within the next 72 hours. Best case scenario is she's home by this weekend.

Emma went around in a wagon today, IE she actually got out of the hospital room. Emma had a long face during the wagon trip, but this was one of the highlights of her day. We'll see if she is up to walking pretty soon. She also got a shower, which is a nice way to get rid of barf smell.

8/8
Emma had a pretty good nite sleep last nite. The nurse and I formed a good team. Em slept thru most of the 4AM blood pressure, temperature, and tube check. She only resisted a little bit to the Tylenol up the wazoo. She barfed twice, but went back to sleep afterwards pretty fast. The IV beeps when the antibiotic solution or saline solution is finished, but E was sleeping peacefully thru that (unlike previous nights when she was sleeping much more fitfully).

This AM E barfed again. J had words with a junior member of the surgical team. There is a question as to whether we need to add back a tube to her tummy to suck out the bile that forms from her digestive track needing to re-boot. If we suck the bile out, then she won't barf. If we put the tube back in, she won't like the procedure, though it should be better than finding a dehydrated vein with an IV needle. Again, the main thing we're trying to avoid is for Emma to develop another abscess requiring another full-on surgery. In the AM, E held down some soup and jello, which is a positive sign. Our mission is to get her eating ASAP. This will help re-boot her digestive system.

The surgical team says the examination of the appendix shows something funny and the infectious disease team may be brought in. My train pal Jeral's wife Sharon may be that person. She is a pediatrician with an infectious disease fellowship. She's stopped by a couple of times already and I even had dinner with Jeral and Sharon last nite. Now she might be brought onto the case. Hopefully this is a red herring, but we'll see. We call our surgical team the "Nurse Betty" team, because they are good looking, talented, and understand both of those facts a little bit too well. They are pretty flip about giving us information sometimes in a way that makes us anxious. The revenge will be when they have kids and have them in the hospital.

J is worn out and doesn't have a super high level of emotional resilience right now. But, she hasn't slugged any of the doctors yet. We're trying to ensure she gets enough sleep and see if I can be the liaison with the doctors.

J and I took E around on the wagon today, all over the greater Stanford hospital with lots of outside time. Again, this is a strange Emma we are dealing with. Quiet, and frowning. Not our normal Emma. She is not much fun for visitors right now.

3PM: Via phone, nurse says Emma is now out in the recreation room, which is a really great sign

8/9
Emma's tummy. Emma barfed 7X on 8/7 and 7x on 8/8. Her digestive system hadn't re-booted yet, so things periodically backed up. There has been some debate over whether to put a tube down E's nose to suck up digestive fluid so she won't barf. The tube is a bit irritating to put in and to have up your nose all the time, but barfing so much is just as bad. E took some anti-nausea medicine last night and didn't barf the whole night. Upon waking this AM, she eventually had 1 tiny barf. So she is now not going to take any food or drink by mouth for 12+ hours. This helps shrink her tummy and helps digestion to re-boot. If that goes poorly, we might think about tubing again. This whole issue is a short term nuisance, but not a long term concern.

My sister had a hurtin' snarf in the hospital. For nasty procedures, which were worse than tubing (spinal tap), the doctors a) sedated and/or numbed the snarf to make the procedure better, b) sent the parents away, because it is so hard on the parents. So while putting a tube back in is kind of scary, it seems there are ways to mitigate the procedure.

J had a bit of a run in with the younger Nurse Betty surgeons yesterday AM. They came whining to the head surgeon afterwards, and we ended up agreeing that the main communication link was going to be between myself and the head surgeon. It may be that J is a bit of a hard parent for a surgeon to work with, but a) her intuition was right and her advocacy in opposition to the pediatricians helped get Emma properly diagnosed, b) the squeaking wheel gets better medical attention.

Emma hates being in her room. She'd rather be in the wagon exploring the greater hospital grounds than being in the room. As I left today, E was painting mom's nails pink outside in one of the hospital's terraces.

Emma has a visceral reaction whenever she sees a male doctor in hospital whites or blues. She starts screaming. It traumatizes her. Something about being poked or needled too much.

Re the funny infectious disease thing. When they take the abscess out, they grow a culture. It grows a number of different types of bacteria. Once you know what's still probably inside Emma, then you can change antibiotics to crush the specific types of bacteria. So we switched E to more effective antibiotics yesterday. This increases the likelihood that she won't develop a second abscess.

Emma had another great night last night. I took the graveyard shift again - J is doing the brunt of the heavy lifting on the case, so its good if we can get her a good night's sleep in a real bed. E had peaceful sleep. The interruptions didn't bother her. The nurse was real gentle. The main interruptions are at midnite and 4AM. Throughout the night the IV starts beeping every 60 minutes or so, but I get up and make it silent by the second beep. I get the nurses and they tweak the pump.

At 2:30AM Emma yells for me. One of the IV bags has a clamped tube hanging down from it. The clamp breaks and fluid spills all over the bed and the floor, eventually waking Emma up and causing the scream. Emma's favorite flower comforter is soaked. I put E on my lap and the nurse changes the sheets. E was pretty quiet and it only took 10 minutes, so ended up not being a big deal. The nurses don't often see random clamp breakage.

Emma smiled twice yesterday!

8/10/01
Emma is progressing nicely. Doctor spoke of going home tonite or tomorrow. What a relief. Emma let Dr. Gil give her a belly examine today, which was pretty relaxed of her. Emma is showing no signs of re-abscess/infection. Temperature is fine. No tenderness in the tummy. She's walking around a bit.

She is now taking in tiny amounts of soft food. This is a big step forward. We'll keep gradually giving her better food. It's kind of hard to imagine Emma going home tonite. She'd be taking 2 antibiotics orally rather than thru the IV. And we're not quite sure how they'd go about drawing blood to check her white blood cell count (another indicator of infection status). I guess they'd take out her super chest tube, so we'd drive back to the hospital or the medical clinic & they'd have to needle stick her to take blood. Or maybe she'd just be so good that we wouldn't need to take blood. We imagine that the sooner we get Emma home, the sooner she gets out of her funk. So getting her home ASAP is the best thing. This would just be an unexpected turnaround for the better.

Emma's funk is receding a bit. Emma hates her hospital room, so wants to be out in the red flyer wagon as much as possible. We put the IV pump on the pole attached to the wagon, put a couple of pillows in, and put Emma in. She's wearing her hospital gown. And she's totally gloomy. Janis and I wander the 3 floors of greater Stanford Hospital aimlessly. I think there is some rhyme about a lost person wandering forever. This is how we feel. She doesn't want to make eye contact with folks. She doesn't want to talk to folks. But, she is so cute and so compelling, that many people want to engage with her. Which just makes her angry. She just frowns more or waves her arm at them to go away. We just wander and wander. Eventually the pump unit starts beeping for some reason like low battery, a tube is occluded, or a drip is complete. Then we head back to the nursing station - or sometimes someone from the hospital helps us make the pump happy and we continue on.

Emma has repeatedly indicated that she wants cheese pizza. Also macaroni & cheese and ravioli. We are working towards that.

Our nanny Anamaria had been a dear, putting in many hours at the hospital this week. I remember Anamaria holding E's hand with her face 12 inches away from E's during one entire nap. Such love and devotion.

We researched the nasty bacteria that E has on the web, Pseudomonas aeruginos: http://www.bact.wisc.edu/MicrotextBook/disease/pseudomonas.html. The particular pages we found concentrated on the deadly outcomes that are possible, especially for folks with compromised immune systems. J and I separately lost a couple of hours of sleep due to this investigation. Turns out that 20% of ruptured appendix cases have pseudomonas. The two antibiotics used to treat it have a high success rate. Plus E has a full functioning immune system that is also fighting it. And, the signs are showing that E is not developing an abscess/infection. In the unlikely event that she does, the abscess will be removed and things will be OK. The nasty bacteria situation is under control. As the doctors put it, the web can be a bit disconcerting because there is no filter on the information. So lay folks can get unnecessarily scared.

This was my third overnite stay. I'm useless. I'm developing a nose cold. J is at the end of her rope. Going home will make things much easier. And it won't happen a second too soon. E had a decent overnite. She only had 2 half hour naps yesterday. She needs a bit more sleep. But things are good.

8/11/01

Yesterday in the late afternoon, Emma's funk lifted! Emma has a beanie baby red lobster called Mia (after Mila from school - got the lobster in Orleans on the Cape). Emma was hanging out in the red flyer wagon by the nurse's station in front of her room when we got the toy doctor kit out and performed a thorough examination of Mia. I had tried to get this going with Nelesha Mouse the day before, but Emma had 0 interest. We checked Mia's BP, took temperature under the armpit, listened to chest and tummy with the stethoscope, administered Tylenol both up the wazoo and orally. Emma became Emma Nurse and I was Doctor Steve. Then we tried to find a vein in Mia's claw by taping on the claw. We found one, so we stuck in an IV needle. We couldn't find the vein immediately, so Mia convulsed with extreme pain. When, we finally found the vein - it only took 1 try and we didn't even have to use lydocaine. So we attached a pretend bag of Gatorade. Then we squirted in a syringe of antibiotics. But our imaginary IV pump started beeping, so we had to fix it. You can imagine that Emma is replaying these tasks in her fitful evening dreams every night. A couple times a night she yells out. Usually she goes right back to sleep without opening your eyes, before you can jump out of bed and put your hand on her.

So E and I are role playing doctor and I have this huge smile on my face. Such a transformation of E's personality. Finally my daughter is back! And when the nurses come by, she engages with them. So all the nurses make eye contact with me and give huge smiles.

Emma had some soul food - noodle soup and other soft food going into the evening. Proving that E's digestion is on the rebound. This is really great news.

Auntie Bev came in for some key relief duty yesterday.

Janis and Emma had pretty bad sleep. Emma reacted more violently to the poking and prodding every 4 hours. She woke up fully and screamed. With me on some of the previous nights, she'd protest slightly and go back to sleep in the middle of BP or temperature. She was more on edge. Meanwhile, Janis had deep, dark nightmares. The kind where she got up and sat by E's side for an hour before going back to bed. You can imagine the impact this had had on J's subconscious too.

This AM E had eggs and bagels. J and I had Noah's bagels and Starbucks, like a true Saturday AM. And we ate together as a family. The doctors came in. E had been quietly drawing flowers for a postcard to classmate Hyungyung (sic) who had made a card for her. Things are going well. Plan is to run the full 5 day course of the new set of antibiotics, which would discharge Emma tomorrow. We'll be cutting back on the massive amounts of ultra hydrating Gatorade IV solution, which means we won't have to clean up pee on the sheets 3X per day.

Our hospital room is cluttered with tons of stuff now. We'll need a moving van to get all the stuff out of it.

J went home and slept til 1:30, again because of the fitful night. E and I wandered in our wagon and did a little walking. We had cheese pizza for lunch. Institutional pizza is a bit of a disappointment compared to say California Pizza Kitchen. But Emma's cravings are actually not her favorite foods. She likes standard pasta better than Pizza or mac & cheese or ravioli.

Then, for the first time in 7+ days, Emma was interested in watching TV. Cha, this could be a double edged sword. We watched the muppets. Then E started what looked like a peacefully and deep sleep nap. Auntie Bev came into sub.

8/12
Emma is home. So ends another Chapter of Emma's life. Well, actually, it was a pretty short period. So we'll just call it an Appendix.