Mommy: “If you could visit any place in the world, where would you go?”

Jocelyn: “I would go to where Aunt Hanna lives.” (Dallas)

Shannon: “To Madi’s house.” (2 blocks away)

___________________________________________________

Mommy: “If you could only eat one food all day, what would you eat?”

J: “Eggs.”

S: “Carrots.”

Mommy: “Carrots? Really?” (Shannon dislikes carrots.)

S: “Yes, carrots. And I would spit ‘em out.”

_____________________________________________________

Mommy: What will you do when you grow up?

S: “Like a person.”

J: “Go swimming.”

Mommy: “I meant, what job would you like to do when you grow up?”

S: “Like a fairy.”

J: “I would like to be a princess.”

_________________________________________________________

Mommy: “If you could change anything about our family, what would it be?”

J: “Christmas is gonna be in spring.”

S: “I’m dizzy!”

__________________________________________________________

Mommy: “What is something you love?”

J: “I love my family. And playing games. And Shannon. And everything in the world. But I don’t like bad guys.”

S: “Carrots.”

J: “Do you love carrots so much you want to marry one?”

S: “No.  Here you go, I’ll give you one carrot.”

____________________________________________________________

Mommy: “If you could be any animal, what would you be?”

J: “I’ll be a fish.”

Mommy: “Why?”

J: “I like to see other fish.  Oh, and I just want to swim underwater.”

S: “Bunny.”

Mommy: “Why will you be a bunny?”

S: “Because I love to eat ‘em.”

Mommy: “You love to eat bunnies?”

S: “Uh huh.”

____________________________________________________________

Mommy: “What color will you paint your house?”

J: “Rojo.  Green, pink, and gold.”

S: “Blue.”

Mommy: “Why will you paint it blue?”

S: “Because I’m gonna paint it pink.”

____________________________________________________________

Mommy: “What would you order if we went to a restaraunt?”

J: “I’ll order a cinnamon crunch bagel and a very yummy apple pie.”

S: “Bananas!”

Mommy: “Why would you order bananas?”

S: “Because I’m gonna get pink bananas.  Eeeeew! Pink bananas smell eeeeewww!”

________________________________________________________________

Mommy: “What do you think Dad does at work all day?”

S: “Because he finished his work time!”

Mommy: “But what does he do?”

S: “He was going to worship practice!”

J: “Work woth computers!  Do programs.”

S:”He crawls!”

_______________________________________________________________

Mommy: “What is the moon made of?”

J: “Rocks!”

S: “Plastic!”

_______________________________________________________________

Mommy: “Tell me what creatures live in the ocean.”

J: “A jellyfish! A shark.”

S: “A purple fish. Eeeeeeee!”

____________________________________________________________

Mommy: “What is something you like to do every day?”

J: “Jugar!” (play) (Makes sign language sign for “play.”)

S: “Climb up the couch!”

Mommy: “What do you wish you could do every day?

J: “I wish I could fly!”

S: “Climb on the couch!”

J: “I wish there were real bouncy shoes.”

___________________________________________________________

Mommy: “What should our last question be?”

J: “What does a fishy swim?”

S: “Why are you doing?”

Mommy: “OK, last qiestion. How old is Mommy?”

S: “Trees.”

J: “Thirteen.”

__________________________________________________________

Mommy: What happened?
Jocelyn: I had to go to the hospital for two days. They squeezed my arm. I know about surgery, too.

M: Why did you have to have surgery?
J: They had to take my appendix out because it got super big. [thinking] And I want my appendix back!

M: What was your favorite part about the hospital?
J: Going home. And the beginning part, because it was easy. We just waited, and that was OK, ‘cuz I got to see the fish in the tank [in the ER waiting room].

M: What made you feel sad?
J: When they put the needle in my veins and took the blood out.

M: What made you feel happy?
J: Going home. And the bubbles, paint, a book, and crayons.

M: What was your favorite thing to eat or drink at the hospital?
J: I liked the cheeseburger. And water. I love water.

M: What was something you did not like to eat or drink?
J: The orange juice. It tastes awful.

M:What can you do for fun at the hospital?
J: Be brave. And you can ride in a car. You can play with a little Yoshi guy. But I wanted to take him home.

M: How did you sleep in the hospital?
J: A bed. And cover me with blankets.

M: Who works in the hospital?
J: Nice people. They take care of people in the hospital. But they’re not like zookeepers.

M: What can you do if you have pain in the hospital?
J: You can get surgery.

M: What if you have pain after surgery?
J: You get a little button that gives you medicine. You have to do something. Push the button.

M: What do you remember most about being in the hospital?
J: What does the Brazillian flag look like, anyway?

[end transcript]

When I got out of the shower, Tom had taken the nasty car seat out of the car, and I noticed that he had folded several loads of laundry and washed all the dishes.  A friend had brought dinner, and I was especially grateful for a green salad with strawberries after eating garbage food while I was at the hospital.  Somehow the kids were bathed.

The evening was rough, as transitions of this sort often are.   I barked at my husband.  The kids fought with each other and with me.  I spent too long at the grocery store, just trying to figure out what we needed. (Getting groceries was part of my original plan for Thursday.  Getting an appendectomy was not part of my agenda.)  I felt like my head was going to explode.  I felt angry.  I felt guilty for feeling angry.  I was completely frazzled and spent.

The next day was better.  Jocelyn slept soundly throughout the night.  Shannon woke up at 2:30, but at least she quickly returned to bed after getting a little attention from Mommy.  Tom did not have to work, since it was Saturday, and we just tried to rebound from the whirlwind that had hit us.  J started her day lying on the floor and acting very weak and tired, but by the end of Saturday, she was somewhat improved and seemed almost normal as long as she took her pain meds. Today (Sunday) was the best by far.  She only took some over-the-counter Motrin for pain around 10 a.m.

Thanks to the modern wonders of internet and cell phones, we have been able to at least partially keep in touch with concerned parties.  We certainly did not make it a priority, since our child’s health was our first priority, but we did the best that we could.  Looking back on the experience, it wasn’t an ideal situation, and certainly not part of our plan, but the Lord held us and protected us through it all.

Through all of this, I was so grateful that I had worn yoga pants and a comfortable shirt the previous morning.  I can’t imagine how rough my night would have been if I ended up sleeping in jeans.  Since the children’s hospital was about 45 minutes from home in traffic (I had the family car), there wasn’t really a way to get the things that I needed, and I knew anyone who visited would have to pay $13 just to park.  Thankfully, the hospital provided soap and towels, so it was sufficient.  I can only imagine how rough it would have been for a single parent whose child ended up staying much more than two days.  I only left J a couple times, once to borrow a phone charger from the front desk, and once to get some real coffee from a restaurant on the ground floor.  Each time, I had to get someone to agree to stay near J while I was gone.

The parade of people–residents (good and not-so-good), nurses, nurse aides, housekeepers, dietary service workers, and the chaplain–was dizzying.  I never realized how much your privacy is violated when you are a patient in the hospital.  I was glad that I had always been sweet to my ER patients, even those who were out-of-control-nasty to me.  It wasn’t hard to see how the hospital could bring out the worst in people.  At the conclusion of our visit, I could mentally acknowledge that it was a very, very good visit with a good outcome, but I still felt traumatized.  I wonder how much worse the many families and patients around us felt after days or even weeks of staying there.  I met so many families who were facing serious and even hopeless situations.  I left the hospital thinking, “I have no problems.”

Discharge orders were written at 4 p.m., and we finally left at 6:30. It took the poor nurse aide about 30 minutes to remove Jocelyn’s IV because she was so scared and kept yelling and fighting.  I really give that girl credit.  She used every trick in the book plus two and finally removed all the kerlix, the armboard, and the tape.  What a relief to see J using both her little arms again.

Prescriptions in hand, we got our last dose of pain meds, and off we rolled via wheelchair transport to the lobby.  Remember that wonderful valet parking?  Well, it wasn’t free.  The person at the desk informed me that in order for it to be free, I needed to get my ticket validated.  What’s a mom to do?  I left my daughter in the lobby with the transport girl and bolted to the elevators and back to our floor.  “Oh, we don’t validate parking,” was the answer.  I asked, “Who does?” and got a blank stare and a mumble.  Frustrated and totally spent, I went back to the lobby and paid the ransom for my car.  J was hurting again from all the transfers in and out of bed and wheelchair, and she started lashing out at me again.  Ironically, the more I did for her during the visit, the more she seemed to resent me.  Our car finally appeared, and I have never been so glad to leave anywhere in my life.  After a brief moment of panic and feeling completely disoriented in the heart of the Medical Center, I recognized Hermann Park and realized, yes! I know how to get home from the zoo.  Mercifully, Princess Crankypants fell asleep in the back seat as I drove, leaving me to sort out my cluttered brain in peace.

The most important task a postoperative GI patient must accomplish is to restore bowel sounds and movement, and to do this, she must get out of bed and move.  If the patient is a small person, woe be it to that small person’s mother, whose responsibility it will be to get the patient up and moving.  Jocelyn did not want to get up.  As they say here in Texas, she was “feeling puny.”  She fought every effort to move her out of bed.  Finally, I tried a different tactic. “Did you know that this hospital has arts and crafts?”

“Arts and crafts!!?!”  She was all ears.

“Yes, but we have to go up to the 16th floor to do them.”

Never have I seen anyone transform from pitiful lump to energetic child so quickly.  Out the door we went, IV pole in tow.  The 16th floor did not have many departments open, and J was mad and disappointed. As we entered the elevator, she whined, “I wanted to paint!”  Well, who was in that elevator, but the same Child Life girl we had seen in the ER.  She went out of her way to bring us a paint set, brushes, and a wooden figurine of a fairy princess.  I was so impressed with her professionalism and kindness.

When we returned to the floor, J latched on to a pink kiddie car and a green dinosaur on wheels, and she amused herself by rolling around the large unit, chattering away.  After a while, she grew tired from all her exertions, and she was soon snoring peacefully in her bed.  The lunch tray with her requested burger had arrived, but she was too tired to care.  I pulled the blinds and settled in for a nap.  My whole body ached from our night of broken sleep.  I had just relaxed and was feeling my body turning to lead when a knock came at the door.  It was the chaplain.  I wondered how she could barge in like that when the lights were out and we were obviously sleeping.  Then it suddenly became clear–as she bumped the bed with a red and white cane–that she was completely blind.  I forgave her for interrupting us on the spot.

A few minutes later, the recovery room paged me, and I was led to the side of J’s bed.  She looked like a small angel with her halo of pale, blonde hair.  She was so very still, I had to lean in to see if she was even breathing.  I have never seen my opinionated, rambunctious girl looking so fragile and dependent as in that moment.  All I could do was say “Thank you, Lord,” over and over.  She had made it. I chatted with the recovery room nurse (probably too much, due to my tweaked nerves), and finally realized that my baby was not going to wake up any time soon.  The pharmacy brought a PCA pump for pain control, and off we went to her permanent room.

The night nurse had already been on duty for a few hours, but she looked as fresh and cheerful as a daisy.  She was pleasant and calm and absolutely wonderful.  After the initial assessment, she left us alone to sleep.  I was so keyed-up, I tossed and turned on the visitor bed for a long time before I lapsed into a restless sleep.  I knew that J would probably be mad at me when she woke up.  After all, I had not kept the hospital people from inflicting pain on her, and she had many questions which I could not satisfy before we took her to the OR.  Before her procedure, she had said to me repeatedly, “I don’t want a surgery!  I don’t like you!  Go away!  Hisssssss!”  I tried not to take her outbursts personally.  She was feeling just as out-of-control as I was, and I really didn’t have much to offer in the way of answers.

Around 4:30 a.m., J woke up and started talking in gibberish.  I offered her water, and she refused, mumbling, “I can’t eat that thing.  I have to keep my tummy empty,” and promptly went back to sleep after I showed her how to push the button to administer her pain meds.  At 5:45, the surgical resident came by, and this time she was alert enough to say, “I’m hungry.  I want a tiny burger!”  It was the first time I had smiled in what seemed like a week.  She was going to be OK, I just knew it.

Because she had slept more than ten hours, she was alert and very chatty, even though it was only 6 a.m.  Every person who entered the room got a speech from her about her surgery.  She had a surprisingly good grasp of the concepts involved. (Jocelyn’s own account will be included as the last installment in the story.)  We attempted to get her up to use the bathroom, and she howled in protest.  I was concerned about her fluid levels when she produced barely a trickle of urine, and I asked the nurse to maintain the IV fluid orders, even though the surgical resident’s usual policy was to lock off the IV after the patient could tolerate liquids by mouth.  I could still smell ketones on her breath, a fruity odor that signifies a lack of hydration as the body breaks down the internal tissues to get water.  As I expected, she became quite tachycardic (rapid heartbeats) after we got her up, and I made it my sole mission to push fluids.  She had a popsicle, water, ice chips, juice, jell-o, and more, all in tiny installments.  She was grumpy, tired, and weak, and so was I.  I had only logged about four hours of sleep, and the unit mysteriously had nothing but decaf coffee to offer its visitors.

I wondered if this recovery was going to take a week.

Finally, after what seemed like an eternity, the attending surgeon entered the room.  We nurses have a saying about most surgeons: “That guy has the personality of a doorknob.” Thankfully, that was not the case with our new friend.  He was friendly, compassionate, and had a gentle smile that set everyone at ease.  He shot straight from the moment he entered the room. “Here at Children’s, we do more appendectomies per year than just about anybody else, about 12,000, and I do many of them myself.  A child with this ultrasound and these labs has an 8 out of 10 chance of being infected.  I will personally apologize to you if I am wrong.”  He went on to explain the risks of rupture, most of which I could recite from memory. “If this was my daughter, I wouldn’t hesitate to take her to surgery.  If she ruptures, she may be infertile for the rest of her life.”

Suddenly everything became clear.  I had prayed with my husband for wisdom, and this was it. She was going to surgery.  The surgeon agreed that she could wait to get her IV until she was lightly sedated in the OR, since the first stick hadn’t been easy or fun.  We waited another two hours.  At 7 p.m., a new nurse came on duty and informed me that the OR was almost ready for Jocelyn, and, oh by the way, they don’t accept patients without an IV.  Since time was short, the Child Life team was not on hand for the second IV start attempt.  Thankfully, this one was good.  I was grateful that the nurse honored my wish that they not use Jocelyn’s dominant hand, since she had been sucking her thumb during the visit to comfort and soothe herself.

Up till this point, I had been very restrained, but I snapped at the night nurse when she returned to ask if Jocelyn had eaten or drunk anything in the past 8 hours. “No, she hasn’t, not since yesterday!”  She disappeared.  When she came back, I apologized. “I thought you could have found that information on the chart.  After all, I have already answered the same question 15 times.” She accepted my apology, smiled with a look that said, “I get that a lot,” and left.

About 7:15, the OR team came down to transport us upstairs.  We saw another surgical resident, who gave J some Versed (a sedative that helps the patient forget the procedure and also a few hours prior), and off she went to surgery.  I must have looked like a lost lamb after she left.  I never even kissed her or prayed for her or said goodbye. She was just gone.  The whole time we had been there up til that point, I had been strong, professional, vigilant and calm.  As soon as my baby was wheeled away, I realized that I was ravenously hungry.  When we entered the ER, I knew that J would not be allowed to eat or drink, and I agreed to wait for food until she, too, was allowed to eat.  Now I felt all the hunger and thirst I had saved up all day, along with the fear and annoyance and second-guessing and every worry about all the things I knew all-too-well could go wrong.  The weight of all this, along with the knowledge that I was completely unable to control anything, hit me in three seconds, and the tears started to flow.  I cried as I called my cousin, who prayed with me and encouraged me.  I cried as I bought a sandwich to replenish my plummeting blood sugar.  I cried as I wandered around the surgical floor, trying in vain to find a waiting room with unoccupied chairs.  I cried as I sat at a vacant concierge desk, eating my food and ignoring at least four signs that declared, “NO FOOD OR DRINK.”  My baby was in surgery.  I was not there.  I wanted to trade places with her.  I wanted to make it better, but all I could do was wait.

At 7:30 Thursday morning, I awakened the kids (they were still in bed), and J immediately started complaining about abdominal pain.  She was pointing to her right lower quadrant, rolling around with her knees to her chin, and refused food and drink.  She had a 99.8 degree temp.  It was a textbook presentation of appendicitis.  Tom was just about to leave with the family car, and we quickly decided that he would stay home with Shannon (two years old) while I, the medical person, would take her to the ER.  I have little faith in traditional hospitals in the area to care for the needs of a child, so I decided to drive through rush hour traffic to the medical center in Houston, to Texas Children’s.  As an ER nurse, I have transferred many patients there, but I had never had a need to visit myself.  By some miracle, I did not get lost, and we left the car at valet parking and quickly walked into the ER.  We were taken into triage even before I completed my paperwork, another miracle if you know anything about the overcrowded state of Houston hospitals.

The nurse questioned J about her pain and took vital signs, and of course her symptoms had evaporated.  The nurse recorded no fever.  J said her pain was a 2 on a 1-10 scale, and she had a smile on her face.  I thought, “I have brought her here for nothing.  I feel like such an idiot.”  I was sure they would stick us back in a crowded waiting room somewhere, but they got us a room right away.

Children’s is a teaching hospital, so we saw one of the residents first.  Then the attending ER doctor (translation: the one with experience) came in.  Both times, J said she had pain, but only when they pressed on her belly.  We were whisked to ultrasound, and when we returned, they ordered a urine and CBC (blood test).  Thankfully, I had the presence of mind to ask for a cup when J needed to pee earlier in our visit, so I was able to obtain a clean catch urine, a much happier alternative to a catheterization. (read: trauma to the nth degree.)

As soon as J heard “blood test,” she freaked.  Of course.  What kid likes to get a shot?  Almost immediately, a cheerful girl from the Child Life team appeared.  She dispensed stickers and bubbles and lots of distractions while the nurse prepared to start J’s IV.  I saw the vein the nurse selected and said to myself, “It’s going to blow.” It blew, but she got her blood test.

The nurse informed me that a CBC takes an hour.  In the small community hospitals where I have worked, a CBC takes 15 minutes, but Children’s has about 100 times more patients than any of my old hospitals.  To give you an idea of the size of the place, it has at least 4 towers that I could see, and each tower was about 30 stories tall.  Each one of those stories could hold 50 patient rooms.  Another comparison will give you an idea of their size: a community ER may have 10 Fast Track beds and 15 or 20 regular beds.  This hospital has 15 or 20 departments within the ER.  There’s a reason they are #4 in the nation.  They are really, really good at what they do.

An hour passed.  The ER resident came in & told me that the labs and ultrasound were “basically normal.”  He said they wanted to keep J overnight for 23-hour observation.  As a nurse, I have a little knowledge of the way insurance and billing work, and I told him he needed to either admit us or let us go home, because most insurance companies will not cover 23-hour observation beyond a small percentage.  Since we are saving up for a second car, I knew that the simple act of placing J in observation could wipe out both our emergency fund and our car savings. I told the ER doc the same thing when he came in to check J again.  He listened thoughtfully. “Well,” he said, “I have very low suspicion.  Everything is very borderline, and she has very few symptoms.” He had J jump up and give him a high five, which she executed well.  “I don’t have a problem with letting you go home.” I prepared mentally for discharge and food.  J had not eaten anything since 6 p.m. the night before, and she was getting very cranky.

When the nurse returned to check vital signs again, I asked if J could have a drink or some food. “Sure,” she said, then returned a minute later. “The doctor just wants surgery to clear her for discharge, and then we can feed her.” More waiting occurred.  Two surgical residents appeared, rather nervous and apparently lacking confidence.  One held a surgical consent, and one sheepishly offered, “It’s surgery’s opinion that we should operate just to be safe.” Whaaaaaaat?!?  I just told my child we could go get waffles,and now you want to take her to the OR? As an ER nurse, I have an inherent distrust of residents.  They may be very nice people, but they are not always right.  I stood my ground. “She’s asymptomatic except for a very faint tenderness.  She has no fever, no change in her coloring, and she is playing happily in bed.  I do not support the idea of performing major surgery on a child who is not sick.”

I don’t think those residents were ready for that kind of response.  They backpedaled and couldn’t find the words they needed.  Then the ER attending came in, and they had a very spirited discussion about the fate of my child.  I thought it was interesting to watch.  I have seen this kind of thing happen in the past, but it’s usually not in front of the patient.  At the conclusion of the debate, the ER doctor demurred, “OK, I will keep her until the surgical attending [translation: the surgeon with all the instincts and experience] can come and see her.” I agreed to this plan, and the three doctors left the room.

Another hour passed.  The nurse poked her head in and informed me that the surgeon was tied up in a very complicated case, and she was sorry about or wait.  She offered crayons and books.  I sighed and thought, “I hope it doesn’t take too long.” J was resigned, lying quietly in bed, only occasionally complaining of hunger or boredom. It would be two more hours before we saw the surgical attending.  I spent most of that time wondering if she really did have appendicitis or not, and how badly this was going to hurt our finances.  I agonized over the possibility of sending her to surgery without cause, and I also worried about taking her home. What if she ruptured and I missed it?  Three hours spent worrying in a sterile, quiet ER room is not good for the soul.

(To be continued)

She said, almost at once, “I want them to vote for me!”

“OK,” I played along, “What kind of rules would you make if you were in charge?”

Here is what she told me:

1.  Kids should have playtime.

2.  Breakfast should be made on time.  And you should get candy after you finish breakfast.

3. About cars: You shouldn’t bump people with your car.  And you should paint it a little every day.

4. After you have dinner, everyone should eat pie.

5.  You shouldn’t kill anyone.

6.  Baby sisters should sleep and not get out of bed.

7.  Everyone should be nice to the world.

8.  Don’t go too close to cats and dogs.

9.  If somebody doesn’t have a house, build them a house with four rooms.  [I asked, how will you pay for that?] I’m just gonna pay for it with the money I had when I was a kid.

10.  Don’t have an airplane crash.

11. The very important rule is to keep the world clean.  We will clean it up by magic and fly over everything.

12.  Fishies have to stay alive.  They will do that by staying in the ocean.

After she found out that you have to be 35 years old, she said, “OK, well, I will just be in charge of New Jersey.”

“I want to live in a painting.  Mooommmyyyy, why can’t I live in a painting??  I’m SOOOOO SAAAAAD!  I want to live in a painting!!”

“If you do not do what I say, I’m going to not be in your family any more!”

“Shannon is being mean, Mom.” (The accused is sitting alone, quietly playing with toys, halfway across the room.) “She needs to go to the mean box.”

“If I don’t get sugar, I WILL BE VERY MAD!  You need to give me a sweet treat right now!” (at which point, I reach for a cheese stick)

“Why can’t I have my second sleepover tonight?” (I respond, “When was your first sleepover?”)

“Mommy, you need to run right now.  If you don’t run, I will take away your cooking privilege for five years!” (She reminded me for several weeks afterward that only Daddy was allowed to cook.  Oh, I wish!)

As for Shannon, my 2-year-old, she is in the “ME DO IT” phase, so that has led to some crazy tantrums, as well.

“NO WANT THAT SHIRT!” (20 times, until I finally figure out she wants the shirt she wore yesterday, which is currently in the laundry, covered in blueberries and oatmeal.  Of course.)

Mommy: “Shannon, will you please take off your shoes?”  Shannon: “NOOOOO!  I WANNA TAKE OFF MY SHOES!!!”

She flings her lunch on the floor.  I say, “Bye bye, lunch!” and cheerfully sweep it into the garbage.  Immediately, she launches into, “I WANT MY LUNCH!”

If somebody else starts saying the blessing before a meal, she yells, “I WANNA PRAY!” and then says nothing for 30 seconds as we wait expectantly for her prayers to be offered.

And my personal favorite: she will approach me with a naked baby doll and say, “Put a baby on this hat.”  I’ll dress the baby, and a minute later, she’ll be back with a new article of clothing and a new request (baby is naked again; what did you expect?).  “Put a baby on a shirt!” She watches me putting an XL-size baby into an XS-size piece of clothing. “NOOOOO!  ME DO IT!”  1…2…3…”Waaaaaaaahhhhh!  MOMMY DO IT!”

Oh yes, life is fun right now.