Elly's 2005 hospitalization

Per a specific request from a friend and in honor of the several friends whose kids have been hospitalized for various reasons this year, I dug up the emails I wrote back in Feb/Mar 2005 to friends and family when Eliana was hospitalized.

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Eliana woke up screaming 3 times Monday night/Tues morn so I took her to the dr (my FIL who is a dr asked his colleagues who the best ped in town was and that's how we got hooked up with Dr. Van Schenck) and he sent us to the hospital to get Xrays and an u/s done to look for a kidney infection or an intusseception (prolapsed intestine). All that came back normal so he sent us to get labs drawn to make sure she didn't have a problem with absorption. Weds morning the Dr. said that her blood test results were allfine except she was a little low on iron so I needed
to start iron supplements. So he said that since all
her other levels were fine, that means that her diet
is fine except for she is not getting enough calories
for her needs, so he called a nutritionist for us to
see. He also ordered some stool samples to rule out
parasites and some other things that can cause poor
weight gain. We went home. Elly acted pretty much
herself but tired and was really not eating much over
the next couple days.

Friday at 2:45 Eliana woke up from her nap throwing
up. A lot. I called the dr who had left for the day
but left a message which the answering service lady
said he'd be checking at 5. Elly continued to throw
up every half hour, the first 2 times it was lunch,
then it was bile. Then she would just dry heave and
dry heave and finally get up about a tablespoon of
bile. It was when her breath started to smell not
just like bile but like poop too that I really started
to worry.

The dr called back at 5:30 and told us he'd meet us at
his office at 6:30. We got there, he basically looked
at her and saw the greenish color of the puke on her
outfit (she'd thrown up in the car on the way over)
and told us to head over to the hospital and he'd call
over to have them admit her and meet us there. I
called Scott, who was at work which is over two hours
away from Sac *not* on a Friday night, and told him to
come over, and called my parents and his parents. We
got to the hospital, got registered, and then my ILs
showed up. Then the dr came and took us back to
x-ray. Again I had to wait in the hall and listen to
Elly crying for mama, this time with my MIL holding
her. They finished the x-ray and my FIL came out and
said it didn't show anything, but that x-rays aren't
100% so they needed to do two tests - one to look for
the inteseception where the intestine telescopes on
itself, and then if that didn't show anything they'd
need to do an upper GI test to look for a twist in her
duodenum, just below the stomach. And she needed an
IV to get her rehydrated b/c she was really
dehydrated.

Then we got taken upstairs to check into the pediatric
ward. We met our nurse who was awesome and waited for
the pediatric radiologist to get done with his shift
at another hospital so he could do those tests. The
ped ward was totally busy - 7 admits basically all at
once - so it was really slow going to get Elly that
IV. Meanwhile she was totally going downhill. She
was sleeping (and that's putting it mildly) on me and
waking up every half hour to dry heave and get up
maybe a teaspoon or two of bile. She wouldn't even
hold up her head to puke, she would turn it to the
side on my hand which I'd covered with a towel and
just puke into my hand. Soon after we settled in the
room my mom got there.

Scott arrived around 10:15, and soon after they were
ready to give her the IV. I held her while they put
it in... there was no sign that she even registered
the needle stick. She stayed totally limp and didn't
make a peep. This from the kid who screams at the
sight of a dr's office. Right after we got back to
the room she threw up again and I think that was the
last one. The rehydration really helped her body get
itself back into whack.

Then we got called back down to the next tests. Again
I was stuck out in the hallway, but at least now Scott
was there to take care of her. She pretty much didn't
make a peep except for when they did the really
painful stuff. The test for the inteseception they
had to pump air up into her intestines through her
anus, so she screamed a little over that, and then the
other test they usually make you swallow barium but
since she was throwing up so much they had to put it
into her with one of those naso-esophageal tubes, so
she screamed a bit over that too. Not crying, more
like crying out in pain.

Both tests came back negative, so no surgery for my
girl, thank G-d. They said it was probably just a flu
bug, but they were going to do more blood tests and
get the stool tests to rule out other things. We got
back up to our room at about midnight, and finally
settled into bed.

Too bad that didn't mean rest. They needed to get a
urinalysis which meant this bag that they literally
stick around their privates to collect it. So every
couple hours the nurse checked it to see whether she'd
peed yet. We absolutely had to get it this way, there
was no option for catheterization b/c of her labial
adhesion - no access to her urethra. Then the first
time the nurse checked her vitals she had spiked a
fever to 101.9 (from 98.1 when we got to the
hospital). The nurse wanted to call the dr to get her
some tylenol but the head nurse wouldn't let her til
after they'd gotten the urine... which didn't happen
til 5:30 am.

She ran a fever basically all of Saturday until late
that night. But Saturday she was definitely doing
better than she'd been Friday night. She even asked
to go on a walk and walked the floor 4 times that day.
I think she was just trying to figure out an escape
route though - she kept trying to hang out in front of
the elevators. I don't think she laughed all day
Saturday but we got a few smiles. Every time someone
left the room, she'd cry and say bye-bye, and we said,
"yeah she went bye-bye" but she'd cry and say,
"Nonna!" meaning, "no, I mean I want to go bye-bye
too!"

The pediatric gastroenterologist came to see us
Saturday and said she really thinks it's just a virus.
She also said she was really concerned about her
weight, moreover the consistent jumping down curves.
She said she's in the 4th percentile for weight to
height ratio. And that when you bottom out on the
weight curves after jumping down like that, the next
thing will be height and head circumference and brain
development. So she wants to see us regularly until
she's comfortable with Elly's weight. She also
approved a clear liquid diet for Eliana to see if she
could keep it down. She did, but didn't drink much.
A few sips of water and apple juice. But her "output"
was acceptable so the nurses weren't worried about her
getting dehydrated again.

Sunday she got put on a normal diet again, but she
didn't eat much. Rice, cheerios, some banana, some
granola bar. Her tummy was still bothering her. Her
temp dropped to normal and stayed there. We went on
more walks and she even ran a little. But she always
came back to the room exhausted. At night she started
really crying and telling me her belly hurt way down
low.

This morning she woke up asking to eat. She had an
egg and some cheerios and applesauce. Big
improvement. She also chugged about 6 oz of water.
We talked briefly to a nutritionist who said basically
what the ped gastroenterologist had already said, and
the gastroenterologist and the pediatrician saw her
and both said she could go home.

So we're home. But she still doesn't feel like
herself, and in fact she just puked once. My mom's
got her right now but I'm going to go cuddle her as
soon right after I talk to the dr's office, which
opens up again in 2 minutes. So I'm off. That's the
story.

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OK so I think the last thing I sent out was about how
we had just gotten home from the hospital and then
Elly threw up again. She slept on me from 1:30 to
4:00, threw up again at 6, and slept from 8pm to 9am
with a brief awakening at about 3:30 to puke. When I
woke her up in the morning, I carried her out to the
couch to watch a video with her, and she was simply
not there. She couldn't make eye contact, couldn't
focus on anything, and was only half conscious. When
I said "Eliana, look at mama," or asked her to do
something simple like touch her nose, her eyes would
open a little further but that was it, they wouldn't
even move in my direction. I called the doc who was
in with a patient and five minutes later when he
hadn't called back I just threw us in the car and
drove to his office.

He examined her and said right away she needed to be
readmitted to the hospital. I said, "when do we start
worrying about her brain?" and he said, "well
certainly at this point we have to consider something
neurological" and said they'd do a spinal tap and
possibly an MRI. I don't know if I told you guys this
but she had been having these weird symptoms for a
couple weeks like not liking her toys that make noise
and not wanting to go on the swings at the park. Plus
on Monday when we got her home she was wobbly when she
tried to walk.

So we got to the hospital and got checked into her
room and waited for the intensivist to come see us and
do her spinal tap. I have never been so scared in my
life. Friday night she'd been out of it b/c she'd
been puking her guts out for hours, and we knew she
either had a stomach flu which the IV would fix or one
of two problems that are fixed with a routine surgery,
so I was worried but felt like everything would
eventually be alright. Tuesday, we were facing
meningitis, encephalitis, and even a brain tumor, and
I was absolutely terrified. I couldn't stop telling
her that I loved her even though I don't think she was
listening to me.

They did the spinal tap and wouldn't let me in the
room, which was horrible, the worst scream I heard out
of all the procedures she's gone through. They got a
new IV in. The intensivist gave us the good news that
the fluid had been clear (a good sign) and then later
we heard that it had no cells in it, meaning there
wasn't even anything in there to culture to find out
whether it was meningitis or encephalitis or not.
Then he said he was sending us for a CT to rule out
anything else that would be a neurological emergency.
My FIL (who was a total wreck) called the pediatric
radiologist and he got us down there pretty quick.
Again I had to wait outside (radiation/pg) but quickly
they came back with the results that it was clear.
Thank G-d.

Eliana was still really out of it by this time. The
IV had perked her up the last time but by now she'd
been on it hours and was still only semi-conscious.
She said "home" once and "Dada" once so I think she
knew where she was and who was with her, but she still
wouldn't make eye contact.

After all these negative tests the general concensus
was that the GI flu had just knocked too much out of
her and her body was shutting down b/c it couldn't
cope and hadn't had enough calories. Basically she
had gone from very skinny but still healthy into not
eating for a week and throwing up quite a bit and just
shoved herself right into a state of malnutrition.

So they decided to start her on a feeding tube, the
kind that goes up through the nose and down into the
stomach. They started that at 11pm Tuesday and did a
drip of 50 ml per hour for 8 hours. By Wednesday
morning, she was looking at me again. Still very
fatigued but making eye contact and talking.
Wednesday at 3:30 they did a bolus of 8oz/250ml in an
hour. That went fine, so she was scheduled for
another bolus at 7:30. 166ml of it went in and then
she threw up pretty much all of that. So they stopped
the feed and called the ped GI dr and she said to put
it back down to 50ml/hr and just do it continuously
all the time. It's 1 calorie per ml so that was 1200
cal per day, whereas the bolus every 4 hours would've
been 1500 cal per day. Then she threw up a little bit
when she woke up the next morning, but just a little.
She was starting to get perky that morning, being
silly, smiling a lot.

Then she napped for about 2 hours and woke up not
there again. No eye contact, not responding to me
talking to her. But this time instead of being
totally lethargic she was obviously in some sort of
pain and she was also having trouble breathing. I
looked at her belly and it was huge. I called the
nurse in and she felt her belly and turned off the
food pump. Within 5 minutes she was making eye
contact again and responding to me, and within 15
minutes she had perked right back up.

So what was happening was that her tummy wasn't
emptying the food as fast as it was being put in,
because when you hit malnutrition your digestive
system starts to shut down, and it hurt and was
pushing on her diaphragm keeping her from breathing
deep enough. We kept it stopped for a couple hours
and then turned it back on at only 30ml/hr. This
morning they put it on 35 and then this afternoon they
put it on 40. She's also been put on Reglan which is
supposed to help the digestive system work things
along.

She's doing really well today. She's giggling and
playing, and really really bored. She's having
trouble walking b/c she is atrophied and tired. But,
assuming she doesn't throw up or have any more scary
episodes, we should go home tomorrow. We will be
getting the pump and formula for the feeding tube
delivered to our house and I will be in charge of that
until she gets to a weight that is not only healthy
but has a good amount of safety net so that an illness
won't bump her from the healthy range to the unhealthy
range again. The GI dr says she wants her at the
25th% in weight-for-height, or above. She was at the
4th% a week ago and I bet she's lower now.

Wish us a steady if slow forward-moving healing
process. I'm so tired of thinking she's getting
better just to have her throw up again or get
half-comatose on me. I'm trying not to get my hopes
up about going home tomorrow, but I know I'm going to
be upset if we don't - b/c that would mean she
would've taken another step backward.

I'm going back to the hospital now - my mom is there
with her but I don't want to leave them too long.
This was my first time stepping out of it since we
took her back, the first time I was relaxed enough to
put her in someone else's hands for an hour.

Hope everyone's been having a marvelously boring life
while I've been off...

Love,
Meg

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Eliana saw the pediatric gastroenterologist today.
She has gained nearly 1.5 lbs in the 6 days since her
discharge from the hospital. The difference is
visible, and so nice. She's back to looking like a
skinny kid rather than a morbidly underweight baby.
We still have a ways to go to hit the 25th%ile though,
where the ped GI wants her - we're at about the
10th%ile now.

We're going to be reducing the amount of tube feeding
and no longer doing continuous but bolus instead - a
lot in a short amount of time - which is just great
for my active toddler. We've been given very calorie
dense supplements to add to any drinks or smooshy/wet
foods - for example one of them is 1.5 ounces and 330
calories. It sounds like this will be a long term
addition to her diet, continuing after the tube is
taken out, since the doctors all seem to agree that
her tummy just can't take in enough calories for her
metabolism, and that's why she wasn't gaining
adequately. We'll also have to continue to focus on
calorie rich foods, like dried fruits instead of
regular.

We have another appt with the ped GI dr on Wednesday,
at which point she hopes to be able to reduce the tube
feedings even more. Then the next appointment the
week after that, it sounds like she is hoping we will
be able to take the tube out. Needless to say, we're
hoping to have the tube out sooner rather than later
as well. Given her weight gain so far I'm feeling
optimistic about it.

I am still just so happy that the illness was "just" a
GI flu, even though it resulted in some complications
and brought to light these calorie issues... the other
possibilities were too scary. And moreover, I'm
thrilled to have my girl back to normal - happy,
silly, and 100% toddler.

Take care all,
Meg

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We had another GI appointment today, and Elly has
gained another 10 oz, in just 5 days. The dr is very
happy with how she is looking. We are keeping the NG
tube in for now, though. She will get it out at her
next appointment which is in 2 weeks.

Originally we had hoped that she could get it out next
week, but we got thrown another curveball - Eliana has
her first ear infection. So, since she's sick, she's
really not eating much. The dr decided to give it an
extra week to make sure she gets through with this
infection first. In the meantime she is back to
mostly getting her calories through the tube and I am
supposed to inject the BeneCalorie (the 330 cal in 1.5
oz) straight into the tube until she feels well enough
to drink her yogurt drinks (where I usually put the
BeneCalorie). I guess I should look on the bright
side of the tube - I can put the antibiotics straight
into the tube instead of coaxing her into taking them
orally!

So, that's where we are...

Oh, and as for me, since so many of you have asked if
I am taking care of myself... at my midwife
appointment on Monday they told me to eat more and
rest more. OK... eat more, that I can do, now that
Eliana is out of the hospital. Rest more, not in my
near future. But overall, I think I'm doing a very
good job of taking care of myself physically.
Emotionally is another story, but I plan to have some
serious me time to make up for it after Elly is
better. For now, there just aren't enough hours in
the day. As for the bun, s/he's got a nice steady
heartbeat and seems to be growing appropriately.
Occasionally turns or kicks or stretches to remind me
that I have to think about someone besides Eliana.
Our ultrasound is on March 14.

Take care all,
Megan

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Ever since she got the tube out, I ask Eliana, "What's
on your nose?" and she says, "No tube!!!" Then
yesterday she saw the general ped about her labial
adhesion (which is gone and looks perfect now) and the
only thing that would keep her from crying the whole
time was me saying over and over, "Just the doctor.
No tube. No hospital." So we got home and had lunch
with my parents and she spent the whole time telling
Grandma and Grandpa, "Noooooo tube. Noooooo popple."
On the phone with Daddy, the same thing. It's sooo
cute.

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Final installment went on the blog: http://oncallmama.blogspot.com/2005/06/bustin-out.html

School. (Mine.)

I appear not to have chosen a midwifery school that is structured in a way that fits my learning style. Fortunately for me, I will be able to seek information in addition to my school program to round out my knowledge. Even more fortunately for me, I've got a preceptor who is taking it on herself to provide me with guideposts for this learning process and who organizes these guideposts in a fashion that is much better suited to my learning style and my goals for myself.

Wonderful preceptors are priceless; wonderful preceptors who are a good match with their apprentices are even a notch above that. (Hopefully apprentices who are a good match with their preceptors provide a fair trade of benefits... I can't imagine that I do as much for them as they do for me, but I suppose I will figure that out when I'm experienced enough to have my own apprentices...)

Nemo

Why is Finding Nemo one of the easiest Disney movies to quote? We sing "Just keep swimming" for tough moments, squawk "Mine!" to break up the tension when the kids get possessive, and speak whale regularly in this household. Today I'm reminded of a different moment that comes shortly after "just keep swimming"...



This is what it's like to come home at the end of a wonderful day of work, or to have a fantastic day hanging out with my kids, and then in the 15 minutes before bedtime Eliana completely loses all composure or semblance of cooperation and becomes a defiant, screaming mess. And yes, that is exactly what happened tonight.

It's like eating a delicious meal and then in your very last bite of dessert biting into something unrecognizable.

I get that having to do something you don't want to (go to bed) and being really tired (because it's. your. bedtime.) is a bad combination. But it can still leave both of us feeling completely disconnected and frustrated right as we are saying goodnight. When we have both calmed down, I'll go in to talk with her, and sometimes this is exactly what she needs. Other times it just starts the whole cycle over again.

Thankfully this isn't too common of a scenario; in fact, tonight's episode reminded me just how much less frequently this is happening now than it used to. I also help myself wind down from it by reminding myself that she knows she is truly loved, even in the rough moments.

It also helps to remind myself of how awesome she is:
E, to male family friend: "So, when are you going to have another baby?"
MFF: "Oh, we're not having any other babies. When are your parents going to have another baby?"
E: "They're not either... my daddy already had the surgery for that."