Sometimes I wonder why they even bother to send us home...

I apologize for the LONG time in between posts.

Things have been busy.

I try to update our FB Life with Lily page daily though

http://www.facebook.com/pages/Life-with-Lily/311949542190053 

So basically we had two blissful weeks at home.

And then we decided to feed her.

When I say decided to feed her I mean we were approved by all her drs to feed her...

And She LOVED the 1/2 oz of thickened formula she ate by mouth.

But within hours she began to not tolerate her feeds.

She started having diarrhea.

She lost all energy.

Then because her Fundo has failed she started vomiting.

I was hoping it was just a flu but the last time we tried to feed her by mouth

this EXACT same thing happened.

I tried everything I could to help her at home but she kept getting worse.

We had to take her in. 

Withing 10 minutes of being in the ER they were admitting her.

Then while we were sitting in the Er 

Lily just randomly passed out.

She was just sitting there then she was arching her back and went completely ridgid

her eyes rolled back and she lost consciousness.

This seemed similar to some of her earlier events but she didn't stop breathing.

I yelled for help and people came running.

They said it looked like a seizure.

We were admitted for stay #23 on Monday Nov 5th

 They did an EEG to see if there was any sign of seizure activity.

The EEG showed some slowing of her brain waves wich

"might or might-not mean it was a seizure"

They decided they wanted to just wait and see if she had another one...

Also,

The Drs didn't believe she 

"wasn't tolerating" and decided she just had a stomach bug.

(whatever happened to that note that was supposed to be in her chart that said to listen to mom? They told me 4 or 5 stays ago that they would listen to my instincts and have me be a part of the "team"...

I guess since she has a trach now all that's changed?)

They put her on IV fluids for a couple days then quickly raised her feeds back to her goal rate

 of 43ml an hour for 24 hours a day.

And by Thursday morning we were going home.

I Told them we would probably see them again in a day or two when she started not tolerating 

but they still believed it was a flu and she was fine now.

I let their optimism carry me home.

I mean their arguments made perfect sence.

(if I ignored her past history AND believed in CRAZY coincidences)

And It COULD have been just a flu...

She got home and slept for 18 hours straight.

(something that would NOT have been possible in the hospital so maybe

 we went home just for that reason)

Then she woke up and the vomiting started again...

It was just twice on friday morning and again in the afternoon.

The diarrhea was gone so she wasn't getting dehydrated 

and I really wanted her drs to look at her monday in their clinic

instead of have whatever Dr was on call making decisions based

 on their brief skimming of her HUGE file.

But On Sat Morning her stomach wasnt emptying AT ALL and the vomiting was 

so severe and she was vomiting out of her trach as well.

Vomiting out of her trach is a BAD sign it means its going into her airway.

So Saturday We went BACK to the hospital. 

For stay #24.

 And thats where we are now.

She is back on IV fluids and the idea is to slowly raise her feeds and see where she 

begins to stop tolerating and go from there.
And we just have to wait it out
and try to keep Lily occupied...

Shes not happy about being here again!

The Trach

Lily has a Trach.

It still feels a bit surreal.

When She is awake and active and looking at me with those big blue eyes

it seems to have already become a part of her,

almost natural.

I already am forgetting its there (kinda)

But...

When she is asleep or I get out of the room for a few minutes alone

It hits like a TON of bricks.

I don't know why getting the Trach has been so much harder (for me) than all the other surgeries combined.

For Lily, it seems to have been the quickest recovery,

with surprisingly the least amount of pain.

But for me this has tilted my world on its axis.

I don't know if its everything building up and the trach is just the straw that broke the camels back,

Or if its all the social stigmas that come with the trach,

 Or the reality of how much having a Trach will change our already medically complex lifestyle

Or if its just terrifying because its her airway and it is DANGEROUS.

Probably a mixture of all of the above.

But, 

I do know that this was the Right decision.

She is now having multiple airway closing events a day

and they are MUCH longer than ever before.

But because of the trach she doesn't turn blue or pass out.

She is able to keep breathing because the part of her airway that collapses is above where the trach is.

The Trach came at exactly the right moment. 

If we hadn't gotten the trach when we did, 

She would most likely be gone by now, 

or at best have some serious brain damage.

The Lord works in Miraculous ways 

and I know he is working miracles through My Lily girl.

And then also there is the Miracle of her voice.

She SPEAKS!

The Nurses and Drs are baffled.

I know its because of all the faith and prayers of those who love her.

Before Lily, the earliest a child had spoken after receiving a trach was 1 week.

Lily spoke after 12 hours.

She woke up the next morning after surgery looked up at a balloon and said

"ELMO!"

and I was too amazed to even cry but then she looked at me

and said

"Mom, Mommy, mommy"

And as I went to pick her up she looked at the 

nurses and Dr and pointed her finger at them

(as if they were in trouble)

and said 

"No, no, NO!"

Not only did she still have her voice she still

has her spunk!

This Picture was taken about 18 hours after surgery

And she is SMILING!!!

She was in the ICU for only 5 days after surgery instead of the standard 7

but 

She still wasn't tolerating feeds.

So being faced with TPN at home yet AGAIN...

We tried something a bit different.

Her Gi suggested injecting Botox into her pylorus

(the muscle at the bottom of her stomach)

It meant more anesthesia, but we had to try.

And so far it has WORKED!

She is finally at goal feeds.

No pain 

No shaking 

No screaming.

However, 

there are still complications.

The anesthesia sent her into a metobolic crisis.

Her heartrate soared to the 200's, her respirations tripled, she developed tremors

 and she spiked a fever. 

Slowly her respirations returned to normal

 and her fever subsided but her heart is still higher than it should be.

But all in all, it looks like she is pulling out of crisis mode...

Also,

When they went in to inject the botox.

they noticed her fundo was ripping out.

And once we got to goal feeds,

 she started refluxing her food and then aspirating it.

They way we know this is,

 her stomach contents are leaking out of her Trach.

This is bad news as it is a guaranteed  way to get a pneumonia.

So we are messing with the rate and volume of her feeds to see if we can find a happy medium

that will allow her to get her full nutrition/hydration needs but keep her stomach calm enough so she stops refluxing and subsequently aspirating.

And then yesterday her trach started bleeding again.

Just small amounts,

but it shouldn't be bleeding anymore.

I am afraid we are headed for yet another surgery to fix the Nissen Fundoplication.

But we will cross that bridge when we get to it.
We will be in the hospital
AT LEAST another week and,

As for now,

I am just so greatful that

the Trach is doing its job of keeping  her breathing and ALIVE.

This video is of Lily speaking with the trach and it also shows what her trach looks like 

without the mist collar attached 

(the blue tubing with the clear mask in the other pictures)

The hardest decision of my life this far...

where to start...

 

Well, the GJ failed.

Completely.

We tried EVERYTHING

to make it work.

 

When the Drs ran out of ideas,

I told them a few things I thought they should try

 

We tried them all.

Nothing worked,

She isn't even tolerating pedialyte through the GJ now,

We had to stop using it COMPLETELY

She is only on TPN right now

(TPN is IV nutrition and only to be used as a last resort)

So remember that post back in August about how this GJ HAD to work?

(You can read it by clicking here)

 Well since it didn't work

We are faced with a choice

either Long term TPN at home

or

try going back to G tube feeds and trach her.

With Long term TPN:

Her port will be accessed 24/7

It almost guarantees a line infection,

(a line infection is extremely serious and often deadly)

most peoples gallbladders are shot in 14 weeks,

and they have liver failure within 1-4 years.

A person cannot live without a liver...

But with TPN she would get the necessary nutrition to survive and

probably wouldn't

need a trach,

or so we thought...

With a Trach:

she will have a tube sticking out of her throat,

She wont be able to speak unless she gets a special speaking valve

and there is NO guarantee that the speaking valve will work

and she wont qualify for one for the first month or so...

(so we wont hear her precious voice or cry or laugh at all)

She will be at a higher risk for lung infections.

She could have damage to her wind pipe.

She will have A LOT more medical equipment that goes everywhere with us

But with a trach

when her airway collapses

she wouldn't turn blue and pass out she could still breathe

She might be able to start eating food orally again

and we could get the GJ tube OUT of her and try to go back to a G.

She shouldn't develop brain damage from lack of air

She should be able to Fly again and go see the out of state Drs she needs to see...

With the two options we have We feel the OBVIOUS choice is the Trach.

Its really kinda sad when going with a trach is the option that will give the best quality of life

So after much prayer and research.

Lily is getting a Trach.

We meet with the surgeons tomorrow.

Then last night almost as if it was ANOTHER confirmation that we were doing the right thing

She had THREE spells.

Her airway collapsed,

She was trying to breath but couldn't

She didn't pass out

but  alarms were going off and her mouth was blue.

The thing was she was on TPN when they happened.

So OBVIOUSLY keeping her stomach empty wasn't going to stop these events

No these events weren't as bad as the others

 but they were bad enough.

I will update more as I learn more.

But I am sad to say my baby girl is getting a trach.

:'(

Finding Joy in the Journey/ stay #22

Lily was home for a total of 7 days this time!!!

WOO HOO!

We made it a whole WEEK!!!

But as nice as it was to be home it was a bit of a tough week...

Lily was hurting and EXHAUSTED

She would have spurts of energy 

but then collapse in exhaustion and pain.

Shes been sleeping 18-20 hours a day...

Mostly, when she is awake. she has just been laying in my arms or sitting on her chair...

She just doesn't have any energy.

Then she started not tolerating her feeds again.

She would curl up in a ball shaking and screaming.

I called the Dr and we tried desperately to manage it from home...

We took her off formula and tried pedialyte

but it only worked for a few hours

and  then her blood sugar dropped.

So we went to 1/2 strength formula

It worked for a little while but her blood sugar didn't like it

We tried 3/4 strength and it didn't work at all.

Finally Monday morning she wasn't even tolerating 1/2 strength

And her blood sugar was all over the place 

And her heart rate kept jumping up to the 230's...

even while she was fast asleep...

We went to the ER

Where they ruled out all the easy fix things

(its never an easy fix with her)

and then they admitted her.

Her blood sugars have been all over the place since we got here

but they seemed to have finally found an IV mixture that is keeping them stable.

Also, as soon as we  stopped the feeds her pain stopped.

She hasn't had anything fed to her for about 36 hours now

and she is soooo much happier.

She is still exhausted.

But she isn't hurting.

Now the big problem is figuring out what to do.

The Doctors are out of ideas.

All 8 of them flat out said

They had NO IDEA what to do next.

It scares me...

How will we feed my child?

I must admit it is really unnerving when experienced Doctors

look you in the eyes and say

"I don't ever say this but I have no clue what to do."

I honestly lately have been at a loss for words.

I spend much more time staring at the screen grasping for the words

to explain whats going on than I do actually typing.

I just lately don't possess words for how I feel...

I have noticed my posts have become much more technical and factual.

Its just that I don't even know how to express how I feel about any of it.

I am in a constant state of mixed emotions.

I am so so sorrowful at seeing Lily suffer

and so so so extremely happy that she is alive, that she is my child.

I find pure joy in the simplest things.

I still laugh often.

I smile daily.

And almost always the smiles are genuine.

But my stomach is in a constant knot.

I am constantly waiting for the next thing to go wrong.

I miss being able to make plans and feel like I will actually be able to carry them out.

I hate CONSTANTLY canceling.

We live in a constant state of upheaval.

However, 

through the help of The Lord,

it has forced me to live in the present.

Even sitting here in the hospital

watching her sleeping peacefully 

listening to my favorite Pandora station on headphones and 

blogging therapeutically,

I feel Joy.

 Pure Joy.

That can only come through the Lords mercy.

If I focus to much on the future

I am almost frozen with fear,

If I focus on the past

I become a blubbering buffoon.

So I live here and now.

And I search out the little blisses

that God sends my way.

The sweet rhythmic breathing of my baby girl,

the happy beats of my favorite song,

 The comfort I feel wrapping around me as I pray.

The smiles and encouraging words of our favorite PCT's

The simple feeling of breathing deeply,

and the realization that 

I actually have EVERYTHING I ever wanted.

ALL I ever wanted was to have a LOVING husband,

who would stand by me through good and bad,

 to be a mom,

to have love reflected in my child's eyes,

To have a roof over our heads,

To have friends who help and support us during times of trial.

To be Free to worship according to the dictates of my own heart and soul.

I Prayed and prayed and prayed for all of this,

so how can I complain at the bumps in the road that come with it?

I have been TRULY blessed.

And with a greater understanding of sorrow comes an even greater understanding of Happiness.

We cannot know one without the other.

So, even though things are difficult 

I am eternally grateful for the life I have been blessed with.

Everyone has trials.

I am not exempt, nor do I expect to be.

And in this moment

this very moment 

with the light fading light casting colors onto the floor,

with every beat of my heart matching the rise and fall of Lily's chest...

I must admit

I feel JOY.

And it is All because of the tender Mercy of my Lord and Savior Jesus Christ.

 

 

They REALLY messed up this time...

Well Lilys tube change was a bit of a disaster.

I would be lying if I said I wasn't upset about it.

It should have been a simple quick 10 minute procedure.

Unfortunately, things went wrong...

That seems to happen a lot when Lily's health is involved...

What should have been a simple quick procedure turned into

45 minutes of torture for Lily,

leaving her writhing in pain and seriously traumatized.

When they tried to place her GJ

a couple of things happened.

First when they removed her G tube she bled A LOT,

which isn't unheard of, but isn't typical either.

Then when they tried to put the GJ tube in they realized that Lily's anatomy

was different in her bowels and instead of curving it takes a sharp right angle turn.

So that made placing it very difficult.

All of that couldn't be prevented and no one is to blame for any of that.

The part that went horribly wrong was

Lily was awake.

Like wide awake.

Now for a typical button change or a 

TYPICAL GJ change being awake is fine. 

there should only be minimal discomfort if any at all.

But this wasn't a typical button change, and 

Lily IS NOT a typical patient.

And where things went horribly wrong was instead of stopping

and realising because of her anatomy this was gonna be difficult 

and pulling out and putting her to sleep, 

They proceeded.

 They held her down for 45 minutes poking and prodding at her

until it finally slipped into place.

When they brought her to me her whole stomach was stained in blood she was dripping with sweat

And Shaking uncontrollably and

SCREAMING in pain.

And I mean SCREAMING.

I asked why she was hurting and

 they said she wasn't.

They said she was just traumatized.

JUST traumatized?!?!?

I asked why she was all bloody and they said 

"I don't know she just started bleeding when we took the tube out and tried to put the new one in"

I told them to give her some Tylenol for pain and they said 

no.

Then EVERYONE disappeared.

They left us in the recovery room

BY OURSELVES

for 30 minutes while Lily SCREAMED in pain.

We looked everywhere for someone to help us.

They were not to be found.

Until someone came to get us and take us back up to our room.

As soon as we got there I explained to the nurse what happened.

She looked up Lily's records about the procedure.

And THERE WERE NONE!

(By this time folks I was LIVID, like shaking, tears in my eyes, could hardly speak, angry

but I kept my calm exterior for Lily's sake. She had enough to worry about and didn't need an angry Mommy biting peoples heads off...

OOOHHH but I wanted to...)

I told our sweet nurse that Lily needed pain meds like pronto and she agreed.

The problem was it was the Dr who preformed the tube switch that had to order meds.

Well and hour and a half later that Dr came up to talk to me

(only because our AWESOME nurse DEMANDED it)

I calmly but firmly told her I was unhappy and extremely disappointed and confused with how things were handled

and that Lily needed pain meds NOW!!!

All I was asking for was Tylenol

Lily was still shaking uncontrollably and SCREAMING and CRYING

"OW OW OW"

The Dr saw this.

She had to ask me to repeat what I said because Lily was so loud.

And she still tried to  say she wasn't in pain.

I told her it didn't matter if SHE thought Lily was in pain or not

I told her this was our 20th hospital stay.

I have seen how my daughter reacts to trauma,

I have seen how she reacts to pain,

AND I have seen how she acts when it is BOTH trauma and pain.

And that in this case it was both.

I told her 

I AM THE PARENT AND I SAY SHE GETS MEDS,

IF I SAY SHE IS HURTING THEN SHE IS.

(It sure helps to know hospital policy and know that she was breaking policy by refusing pain meds)

She just said OK and left.

An hour and a half later

Lily was FINALLY approved for TYLENOL!

By this time the nurse was fighting back tears, and so was the head nurse.

I don't think I had any left.

I was kicking myself for taking the baby Tylenol out of my purse just 2 days ago.

If I had had any I would have given it to her in a moment.

The Tylenol ,when it finally came, calmed her and she stopped screaming enough to sleep.

But every 4 hours, like clockwork, her heart rate rises, she begins breathing fast and

wakes up crying "ow ow ow"

Today I finally convinced them to give her something a bit stronger, and that helped.

Her smile came back and she started playing softly and gingerly with her Elmo.

But still over 24 hours later she is still hurting SO bad.

Two nurses and I filed formal complaints.

Her normal Drs were either to mad to speak, or literally in tears when I told them what happened.

It turns out that during the 45 minutes that they were

messing around in her, her stoma closed

(stoma is the hole surgically place for the feeding tube to go in) 

Then they just forced it back open

and she felt it all

Her GI Dr said she basically had G tube surgery while she was awake to feel it all.
He WAS FURIOUS.

 They also caused damage to her intestines.

She is barely tolerating feeds at a rate of 15 ml an hour.

She has to be at least at 45ml and hour before she can go home.

If she is still hurting in the morning they will have to take more pictures and may have to remove the tube and do it again (Under anesthesia and WITH pain meds)
  or she might not even be able to have one at all...

so that's that I guess,

We just have to wait and hope the damage isn't severe and will correct itself quickly.

I don't really know what else to say

except thank you all for your thoughts and prayers!

So NOW they finally take me seriously...stays #18 and 19

So I haven't blogged for a while.

Things have been...busy...

So let me catch everyone up on the past month.

On June 30th we were finally approved by Lily's Dr's to fly so we flew up to Utah.

Shaun's sweet Grandma was dying and she wanted to meet Lily before she died.

So We jumped on a plane and made the short hour long flight to SLC.

Lily did great on the plane, and I was very excited about it.

We drove straight to Grandmas so we could see everyone.

And it happened again.

 

She stopped breathing.

 

Turned blue and passed out in my arms.

 

Shaun took her laid her on a bed and started CPR.

But the rescue breaths couldn't get passed her throat.

Something seemed to be blocking her airway.

So he did some chest compressions 

Which did the trick. 

She started breathing and woke up.

She cried while I just cried and held her.

(I am so glad Shaun had JUST renewed his CPR certification the week before)

We called the Drs back in Phoenix and they decided it was probably just an isolated incident

due to the change in pressure and altitude from the flight.

And once she stopped crying she was fine.

(I must admit, I started to second guess myself and wonder

if this was just a "breath holding spell" and not laryngospasms despite the fact that her airway seemed to be blocked when Shaun was giving CPR...

but more on that a bit later)

We had a nice visit and it was GREAT to get to see family.

Although it was heartbreaking to see Grandma dying, 

We were so glad Lily got to meet her, 

and everyone else she hadn't had a chance to meet yet!

On the 4th of July we went to a park for a BBQ

and Lily had her first taste of playing in the sprinklers.

The next day We went to a birthday party for Lily's adorable cousin.

At this party her diarrhea became much much much worse.

In the next 28 hours she had more than 20 diapers.

She was hurting. 

We had to take her to the ER.

Luckily there is a Children's hospital in SLC.

Most typical hospitals aren't equipped to deal with 

Lily's "complex medical nature" even those with pediatric wings

And so we were very fortunate to be near a children's hospital 

where they had the tools and knowledge to be able to accommodate

to her needs

(IE: the pediatric sized port, and g-tube)

We got to the ER and she was dehydrated

( No surprise there, who wouldn't be after diarrhea like she had?)

But she was also significantly anemic, 

and her blood sugar was 50,

which is low but not horribly low.

An ideal blood sugar for her would be between 80-110.

(remember that for later)

So they admitted her.

Primary Children's Medical Center is a great facility.

Even though it is TONS smaller than PCH,

I almost liked it better.

The Doctors were very respectful and it was nice to

get some fresh eyes to look at her and find some things we had been missing

(like the anemia, and possibly the blood sugar)

We were there for only 3 days.

Just long enough to get her stable enough and filled up with fluids

 for us to make the drive back to Phoenix.

We had to drive back because they said Lily shouldn't fly again because she had stopped breathing

just hours after getting off the plane.

On the way back to Phoenix

we stayed the night at Shaun's old friends house in Saint George.

That night Lily started holding her tummy and saying ow

So I vented her like I always do when she does that

and I got this out of her tummy

yup that's blood mixed with her formula

And this picture only shows part of it.

There was more all along the tubing and I had to fill 2 syringes because there was so much just sitting in her stomach.

All in all, I probably vented almost 4 ounces out of her tummy all mixed with blood.

The good news was after we talked to the Dr's they thought it was safe enough to bring her to Phoenix the next day and get checked out.

So that's what we did. 

We drove the rest of the way the next morning and Lily did great!

 And even better I didn't see anymore blood all the way home!

 

The Dr's back at PCH didn't seem to concerned when they saw her and they ended up sending us home

without having to admit us.

 

About a week later I vented blood from her stomach again.

I called the Dr, who called another Dr, 

who then called me and said they wanted to admit her for a BUNCH of testing.

I must admit, I was in a Circle K holding Lily when they called me.

I had just left the funeral of an old dear friend so I was already emotional,

But I totally embarrassed myself by bursting into tears in the middle of the store.

I just am tired of having 

SO MANY HOSPITAL STAYS.

And I hate that this is so hard on my sweet little Lily.

We got admitted around 4 on a wed, which meant nothing would really happen until the

next day except for xrays and some blood work.

Thursday also brought more sitting and waiting.

Friday morning we were scheduled for three different scopes and 

ANOTHER EEG.

Lily had been acting odd all morning on Friday but during the EEG she really started to scare me.

She was pale, and couldn't even sit up on her own, I had to hold her up.

Her eyes kinda glazed over and she stopped responding to my voice.

Here eyes were open but it was like she wasn't there.

 

I told the lady I thought something was wrong, but she said she was  just tired.

I then told another person that Lily was acting weird and was really scaring me

and they ignored me as well.

It wasn't until we got back to our room,

and her AWESOME nurse came in that someone listened to me

The nurse immediately took her blood sugar and she was 21!!

She called the Dr's and started giving her some emergency meds.

They were saying they didn;t know how she was still consious,

that she could slip into a coma or a seizure at any moment.

 

she had only been given 10% of the recommended dose of medicine

when they checked her blood sugar again to make sure it was rising...

It had jumped up to 385!!!

So they brought in another specialist.

Endocrinologists.

The regular Doctors also came in and sat down with me and told me that they were 

sorry I wasn't listened to before and they have it in my chart that

I am to be listened to, that I (as her mother) am good at reading the subtle signs of distress 

and that I will be taken seriously from now on!

 

BOO-YAH!!!

Anyways,

They now had to do a bunch of tests to figure out her new blood sugar issue before we could even think of going home,

but in order to do the tests her blood sugar had to drop again.

So We had to take her off her feeds and check her blood sugar every 1/2 hour until it dropped.

After a while she became dehydrated and stopped bleeding as much so they had to poke her 2-3 times every 1/2 hour.

By the next morning she had had 35 pokes throughout the night 

and her poor feet were stained in blood.

I HATED allowing them to do it, but we had to know how to treat the blood sugar issue

before we could go home.

Blood sugar issues aren't something to mess with.

Then because of the blood sugar issues we had to postpone the scopes that she had scheduled

until the following Monday.

 

She had three scopes planned.

An EGD(stomach scope with biopsies),

a sigmoidoscopy (rectum scope with biopsies),

and a bronchoscopy (lung and airway scope with biopsies).

 

So apparently during the procedure

(after she was asleep but before they had begun anything else)

She stopped breathing again.

Because they saw it they confirmed it was a laryngospasm.

The anesthesiologist left claw marks on her chin from where he had to

hold the oxygen mask on so tight and FORCE her airway open.

He said while it does happen while people are under anesthesia,

It was the quickest one he had seen,

They now have NO doubt that these events she has been having 

ARE LARYNGOSPASMS.

And I don't have to second guess myself either.

They said her larynx is incredibly touchy and it just likes to spasm shut at the slightest irritation.

They then proceeded with the scope and found out that she had

"large amounts of frothy liquid" all throughout her airway and into her lungs as well.

The tests on this "frothy liquid" are still pending, however they believe it is stomach acids

and that she is refluxing past the fundo

(which isn't supposed to be able to happen)

Anyway, she has a lot of liquid in areas it shouldn't be and that's a big concern.

 Then after we got her safely back in my arms and back into the room last night, she spiked a fever

then her heart rate rose to the 200's and her oxygen kept dropping.

She finally stabilized after a few hours and has been stable ever since

So that's where we are now,

just sitting in the hospital 

waiting for test results so

they can know how to treat her and where to go from here.

I do know we will now be checking her blood sugar at home regularly,

and we get to have her back on our "good friend" the apnea monitor while she is sleeping.

(she was on an apnea monitor until she was 11 months old)

Tomorrow we should start getting some test results.

They believe that she was/is in a "metabolic crisis"

which is unfortunately a part of Mito,

But it often means the disease is progressing.

I hope it never happens again...

Honestly I hope she never ever ever has another symptom again.

I wish it would just STOP.

It hurts my heart that she is only 18 months old

and has had 19 hospital stays.

But she is a fighter.

She has such a happy spirit and she is so strong willed.

She LOVES life and it shows.

playing peek a boo from her princess castle hospital bed

happy girl minutes before going back for the scopes

You would never know she had stopped breathing on an operating table less than 24 hours before this was taken

 You would never know from just looking at her

that this little angel is fighting for her life.

She is so strong.

I admire and respect her strength, her spirit.

I LOVE HER!

 

 

 

TPN vs Neocate THE BATTLE

Working Lily off of TPN 

was much slower than last time.

Her Tummy just didn't want to accept food AT ALL.

The large yellow bag is TPN the white syringe is Lipids

In order to sustain life Lily needed to get to a rate

of 45ml and hour for 24 hours a day,

7 days a week into her G-tube.

(45ml is equal to 1 1/2oz.)

When she goes on TPN,

NOTHING goes into her G-tube.

So after she has had a few days with nothing in her tummy we 

try introducing food (her specialized formula) again.

We have to take it painstakingly slow.

AFTER being on TPN ONLY for 72 hours,

she started at 5ml/hour of formula (via G-tube) for 24 hours,

then every 24 hours we would up it 5ml.

Everytime we upped her formula rate we would lower the TPN a bit.

So to go from 0 to 45,

without any complications would take 

9 days...

And this is Lily we are talking about so

OF COURSE there were some complications.

Somewhere around 35ml

she started backing up stomach contents into her g-tube,

and then when I vented her some blood came up.

Luckily the blood only came up once so it looks like it was from the scope.

Then when we got her to 45,

She stopped tolerating completely.

Her stomach stopped emptying,

and her stomach became hard and extended again.

She was grunting and moaning in pain and her pupils were HUGE from pain.

So we had to back off a bit and turn the feed down.

Then she started having lock jaw.

About three times a day her jaw just locks open.

It doesn't seem to hurt her but

she does get frustrated with it and she has to physically

push it

( with my help)

 to get it to close.

Its only stuck like that for a few seconds

but when it does close there is a LOUD "Click"

The Doctors wanted me to take a picture of it

And I was fortunate enough to actually capture TWO. :)

We will be seeing an oral surgeon soon to see what (if anything) needs to be done

There is a possibility this will get worse over time, 

but hopefully its just a weird thing that will go away on its own as she grows...

OK, so back to her feeds.

When she stopped tolerating her feeds again,

The Dr came in to talk to me about 

Sending her home 

ON TPN.

I was NOT OK with that.

That would mean her port would be accessed 24/7

MAJORLY increasing the risk for infection.

An infection in the PORT 

IS BAD NEWS.

It would mean more trauma of dressing changes and

accessing and re-accessing the site.

It would mean home nurses.

Plus, I was against prolonged TPN use because of the damage it can do to the organs.

I just felt like sending her home on TPN was a bit drastic and 

while I am glad it is there when necessary

I don't think it was completely necessary to send her HOME on it YET.

So I told the Dr all this.

He was annoyed but agreed (after much persuasion) to consult with another Dr on it and also

give Lily a bit more time to tolerate her feeds so

we could get her on her needed rate of 45ml/hr.

Well later that day, she began tolerating much better,

and she did so well that we eventually were sent home

without TPN.

YAY!!!!

Yes her diarrhea is still there though...

She has had diarrhea for 70 days now

(with the exception of 1 or 2 days last month)

 I don't know what they are gonna do about it,

but we have many appointments over the next week so

hopefully we can get some more answers there.

So this hospital stay was just a bunch of

"waiting and seeing"

And I had to get very CREATIVE to keep Lily occupied.

 My friend Brandis brought Lily an awesome bag of little toys

and glow sticks and things to keep a toddler occupied while in the hospital.

She also brought us a red and white checkered plastic table cloth from the dollar store

to place on the ground to make a "sanitary" play place for lily on the hospital room floor.

 then I had Shaun bring two bags of beans to put into a bin for Lily to play with.

SHE LOVED them!

Here is the beautiful view from our room 

Phoenix

Helicopter???

this is our lovely prison...oops I mean Hospital room

PCH 6th floor

Happy girl

We had lots of visitors and watched ALOT

of Disney movies.

Tangled, Monsters INC, Finding Nemo, and Tinkerbell are her favorite

watching Tangled

We set up a bunch of pillows and toys in a wagon. And set the laptop so she could watch Backyardigans.

We also had the Joy of having Lily's Grandma-ish and Aunt-ish visit.

(Shaun's Aunt and cousin, but we call them Grandma-ish and Aunt-ish)

They had a trip planned for months and unfortunately we were in the hospital for almost

their whole visit.

We still had fun and Lily LOVES Her Grandma-ish!!! 

Lily is home now and very weak and clingy from spending 2 weeks in the hospital

but VERY VERY happy to be home.

Hotel P.C.H.

So last Friday Lily was admitted to the hospital again.

This is stay #17

We spend so much time here it feels

"normal" to be in the hospital.

 

Lily has a reputation as the "adorable sassy one",

And usually the first thing a new doctor says is

"OH, I have heard ALL about you Lily!"

And they proceed to tell  us about some cute story someone told them about

from one of our past visits.

 

I remember the first time we were transferred to PCH.

This place felt SOOOO BIG!

I remember thinking 

"how can there be this many sick kids in one city at one time???"

 

PCH doesn't seem so big now. 

 

Its funny how something so large and overwhelming

can become so regular and unimpressive.

Not that I am not SOOOO grateful it exists

and that we have access to it.

PCH is a HUGE blessing in our lives!

So, the reason we are back here again is:

Her diarrhea actually got even worse.

And she stopped tolerating ANYTHING in her stomach at all.

 She was in such pain that she just screamed and screamed.

When she would actually fall asleep she was breathing fast and 

whimpering the whole time.

AND  her stomach stopped digesting and emptying properly.

So, back to the hospital and back on TPN.

We started TPN on Saturday and they did more stool studies.

Of course the studies came back positive for C. Diff

But I informed the nurse it was my belief (and the Infectious disease Dr's belief) that

it was a false positive.

The Dr didn't agree and came to "convince" me that Lily needed

yet another round of Vancomyacin.

I told him it could wait until the scope (the next morning) because I did not think she had C. Diff.

And giving antibiotics unnecessarily is a bad idea and often does more harm than good.

He didn't like that, but he had no choice because I am the Mom and

I can refuse treatment.

 

They did the scope and took some stool from

inside the colon and took a bunch of tissue biopsies.

Everything came back normal!!!

which meant no C. Diff!!!!

I was so happy for about 15 minutes that

I had made the right choice in refusing the Vanco again.

I was proud of myself for saying "NO" right to a Dr's face.

 

But as the pride faded I realized...

 

this meant we had NO IDEA why she was having this diarrhea

and why she wasn't tolerating feeds.

 

She did have a UTI however, 

but that was secondary to everything else and a few rounds of 

yet another antibiotic cleared that right up.

 

So we added two new medications to try to see if that helps the diarrhea.

We are also slowly weaning off TPN as we are verrrrrry slowly putting her back on formula.

She isn't tolerating it very well though and every time they raise the rate on her feeding pump,

She becomes more agitated and fussy

And her tummy gets slightly more tender and more extended,

And the diarrhea worsens.

She had an ultrasound of her kidneys today just to make sure

that the UTI hadn't reached them and it was normal 

so that's good.

At this point its feeling like a guessing game.

One Dr said she may just have to "live with the diarrhea, and rashes."

Yeah... I am not ready to accept that.

This isn't your average lose diaper and rash.

This is watery, putrid stuff

that comes so violently and in such huge amounts that it fills the diaper and 

then shoots up her back sometimes reaching her hair...

If I hadn't seen it happen I wouldn't believe it.

And Its not just once or twice a day(unless shes on TPN of course)

If she is on her formula it is 10-12 times a day.

No, I do not believe I can just accept that there is nothing to be done...

 I know of a few things we haven't tried yet

and I'm not even a Dr...

But, I will not quit until we have exhausted every possibility.

 

That's part of the problem with the health care system.

The Doctors only hear reports or see test results.

They cant be there to witness everything like the nurses can.

So when the Dr hears about

"severe diarrhea, and a child in pain"

they don't get a clear picture of how it actually is.

And I feel like they are inclined to believe the parent is exaggerating.

Hearing is very different from seeing.

 

Any of the nurses that have seen the diapers,

 helped clean up the blow outs,

changed her sheets multiple times a day,

seen her screaming, 

watched her skin get worse and worse as the diarrhea returns as she is weaned off TPN...

Any of the nurses that have been there to actually witness it agree

 that it is severe and we CANNOT just give up.

But nurses only have so much sway with Dr's.

Luckily, I learned early in Lily's life

how to be an advocate for her 

and I surely wont stop now.

A 3 day stay turned into 10....

So what was supposed to be a short 3 day stay turned into 10 days.

She was admitted for TOTAL gut rest meaning they were going do TPN.

 So we got there and OF COURSE they didn't have the TPN ready yet

So we waited and got comfortable in our room for about ten hours

Until the TPN was ready.

She LOVES to play with foam tape to pass the time...

And what kid doesn't LOVE stickers?

 

They did a bunch of blood work and stool studies and

She tested positive for C. Diff.

 

"Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), 

often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon."-MayoClinic.com

The problem was she was ALREADY on the medicine

most commonly used to treat it (Flagyl) and was on her THIRD cycle of that med.

The doctors started her on Flagyl a FOURTH time.

They also sent in an Infectious Disease Dr. (ID)

After speaking with her ID, GI, and Attending

They all came to the conclusion

(after I suggested it)

That since we had already tried  Flagyl with little to no effect

they wanted to stop the Flagyl and switch to 

a much more potent antibiotic

Vancomyacin.

But an odd thing happened.

As soon as she went on TPN,

Her diarrhea stopped completely.

Now, if it was C. Diff it wouldn't have just stopped like that.

The ID docs AND GI BOTH agree it was probably a false positive.

But just in case they wanted us to finish out the 10 day antibiotic.

From there it was just a LOT of waiting.

She was on COMPLETE TPN for 3 days

Then 1/2 strength formula and half TPN for 24 hours

Then 3/4 strength formula and partial TPN for almost 36 hours,

Then they boosted her up to Normal formula at the slowest rate possible and weaned her off TPN.

As soon as they started her back onto the 3/4 strength formula the diarrhea came back.

It wasn't as bad, but bad enough.

We also found out she had lost almost 2 lbs.

She had been 22lbs 14oz

and was now 21lbs .

They wouldn't let us leave until she gained weight.

Oh and somewhere during the stay she developed a G tube infection.

Which meant 3 rounds of ANOTHER antibiotic.

I took this picture so I could remember how "fun"

it was to have a VERY MOBILE toddler attached to 

so many cords.

Now when she was younger there were times when she was attached to

just as many if not more.

And it was annoying.

But she moves SOOOO MUCH now.

There are seven or eight cords/lines in this picture.

I must admit I am so so glad we only have ONE at home now ;)

Oh and they also had her attached to TWO different IV poles.

It was a HUGE ordeal just to walk across the room.

I have never been more grateful for our laptop and Netflix than I was then!

She typically sleeps like this

Usually only if she is SUPER sick does she sleep on her back.
Unfortunately when she is all scrunched up the nurses think

 they have to turn her over to give her her meds.

When they do She wakes up.

When she wakes up she takes 2-3 hours to go back to sleep. 

Then she sleeps for an hour and its time for them to give meds again...

So after 5 nights in a row of this she slept a whole night like this

Sorry Its so blurry I didn't dare take another one for fear of waking her

For the most part we just tried to keep Lily entertained.

which was a bit of a challenge because we weren't allowed to leave the room.

 We made diaper hats...

  and tutu Lions...

 We set up a fun toy area in her crib 

and set up the laptop so she could watch her shows and Mommy could

take an HGTV break ;)

 

Oh, and we learned to fly by watching

The land before time...

When we finally did get to go home they sent her home on a 24/7 continuous drip.

That means she is ALWAYS attached to her feeding pump.

AND it means NOTHING by mouth.

I am sad that she no longer is able to have anything by mouth.

Not even her formula...

It is so hard to have her asking for food and trying to sneak food

when we can't let her have any.

If she sees us eating she opens her mouth wide and signs "Please"

it breaks my heart.

                                                   Hopefully this will only be temporary.

But this means we got a new pump!!!

The previous pump was temperamental and heavy and bulky.

The new pump is small and works upside down or on its side

and it comes with a backpack so she is completely

independently mobile! 

 

Here she is dancing to Pandora's "toddler radio" wearing her new pump.

(once again sorry it is sideways my phones camera is old and doesn't let me switch it :/ )