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!

 

 

 

Last weeks surgery and hospital stay

On Easter night, 

as my home was full of family,

it happened again.

In front of everyone 

she turned purple/blue,
stopped breathing,

and passed out.

I was told to email my doctor if/when it happened again.

So I did.

The called me Monday morning and said they were admitting

us for a 23 hour Impedance study.

Well we get there and waited and waited

and they told us they wouldn't be starting it until Tues morning!
Ugh typical hospital "Hurry up and wait"...

So Tues morning came and they took us down to place the probe.

It had to be done under anesthesia because of the risk of
causing another ALTE
(Apparent Life Threatening Event)
To read about these see my post here

Again she woke up relatively happy from anesthesia.
The probe looked just like an Ng tube
except it was attached to a small digital box
That Had different buttons for eating, sleeping etc.
The probe had to be in for 23 hours.
 Later that night as I was TRYING to put her to sleep
 I realized my shirt was all wet.
It turned out
 her port was leaking!!! 
To read about what the port is go here 
I tried not to freak out and called the nurse
(who did freak out :) and came RUNNING )
And we discovered it had infiltrated into her skin


 See how swollen and puffy it was

 

This is what her port looks like when it isn't swollen

this one really shows how puffy it got

yes another pic of her swollen port  but shes cute in it sooo I had to put it on here :)

  It didn't seem to bother her though...
The problem was we had to re-access it to lock it with
a solution called Heparin
 so it wouldn't clot up.
They tried and it
Wouldn't work
Her port wasn't working AT ALL!
They couldn't flush it or get any blood return.
So They called the Iv team to come and try.
If this didn't work she would be having port surgery asap.
After an hour of holding her down while she screamed
(It was already midnight by then)

They finally got it to work.
Whew! no surgery!!
Well, at least not on her port...

It took a while to get the results of the study
and so we just had to wait...

waiting in the hospital can seem like time is standing still...

When the impedance study results came back it did show,
that despite being on the highest doses of reflux meds possible,
She was still refluxing significantly.
They wanted to do the Fundo before we left the hospital.
The thing was that there was
NO GUARANTEE
that it would stop these events.
We saw three different surgeons, Two GI's, a pulmologist, And many other resident and
attending Doctors
They all recommended the Fundo after seeing the study results.

We had a decision to make.

Listen to the doctors and risk putting her through surgery that
might not work

or

don't do surgery and hope these "spells"
just go away or at the very least don't get worse...


They told us on Wed and scheduled the surgery for Friday morning.
I felt sick.
I did not want her to have surgery.
I wanted to pretend nothing had happened.
What if these were the only spells she would ever have?
What if it wasn't caused by laryngeal spasms?
What If we didn't have surgery
and the next time it happened she didn't start breathing again?
The "what if's" were weighing heavy on my mind.
But every time I closed my eyes I could see her
Blue and limp, seemingly lifeless in my arms.

We couldn't make this decision on our own.

Naturally we prayed,
 A LOT.

Thursday evening we still weren't sure what to do.
So all three of us went down to the chapel in
The hospital and prayed.
Shaun and I both felt an overwhelming peace
and the comfort that this surgery was what we should do.
As soon as we had our answer
my heart felt calmer,
Yes, I still feared for the pain and suffering
that naturally comes with any surgery
but I trust The Lord,
So, since I knew this was what He wanted,
I felt a HUGE burden lifted from my shoulders.


The surgery took 3 hours.

They were telling me there was a good possibility
that they wouldn't be able to do it laparoscopically
and would have to completely open her up.
It worked out so they were able to do it laparoscopically,
with NO COMPLICATIONS.

The Lord had blessed us!


She was miserable for the next 2 days.

 A friend brought her this doll with changes of clothes and all she did was hug it!
and ask me (through signs and gestures) to change its clothes.
She didn't talk verbally or smile for two days.

And then by Saturday night

She started smiling and playing.

She started eating!

She was doing so well we were sent home Sunday night

just 2 days after surgery!!

She still needed pain meds until Tuesday

Wednesday, we took her in to see the surgeon because her tummy was extended.

She had developed gas bloat syndrome.

Heres a brief explanation of it.

"GAS BLOAT SYNDROME"

"The National Digestive Diseases Information Clearinghouse says that excessive gas, flatulence, abdominal bloating and distention are potential complications of the acid reflux surgical procedure known as fundoplication. These symptoms are called the gas-bloat syndrome and occur in approximately 10 percent of patients who undergo this procedure. The surgery creates a one-way valve that lets food and drink pass through the esophagus but prevents the normal belching of gas leading to its entrapment. Sometimes this condition improves spontaneously with the passage of time."

Read more: http://www.livestrong.com/article/243757-complications-from-acid-reflux-surgery/#ixzz1tAeWqiaF

So Not the worst complication at all!

But a day after Surgery she started having severe diarrhea.

Not surprising considering she always gets it after anesthesia.

But Surgery was 12 days ago and Its only gotten worse.

 For the past 4 days within minutes of food hitting her stomach it all runs out

Now, we thought it was a flu,

(which it probably was because I got it too but it only lasted 36 hours with me)

But because her symptoms stop when she stops getting food,

it looks like its something else.

So far the doctors have been monitoring her closely at home 

and we only had to go to the ER once (Sunday night) to culture her port

because she had a fever.

But if she doesn't start tolerating soon,

They wont have any other option but to admit us.

UGH...

Well, that's just Life with Lily I suppose...

And I am grateful for her and everything that comes with her!

And I am Grateful for the prayers from all of you!

And for the amazing Mercy of The Lord!

 

Again?!?

So here we are again!

Lily is back in the hospital and

She is having surprise emergency surgery tomorrow.

This is her 11th admission.

I am still a bit in shock it all kept happening so fast. 

This morning she woke up crying

(not a good sign)

She had fed the bed yet again...

but this time she was FREEZING and her legs were blue...

I put her in a warmish bath to warm her up like I always do

when she has fed the bed, but this time she didn't warm up.

I put her in our bed between Shaun and I and she finally started warming up after we massaged her legs and feet for a long time.

About an hour later she was ice cold on her arms and chest and was uncomfortably warm on her legs

She had weird splotches all over her legs and she had a temp rectally

but her head was really cold.

Her temp fluctuated but she had an appointment for tomorrow so 

I just put in a call to her doc to see if they wanted to see her today instead.

We were on our way to our first feeding therapy when

the doc called.

She said to skip FT and go straight to the ER.

So much for our first feeding therapy appointment..

We waited 8 months for this one so one more week wont hurt I guess...

The First doc we saw asked why we were even here cause

"she looks fine to him"

I told him how she "looks" is deceiving and he kinda rolled his eyes.

So I told him to call her doc who sent us there

And ask HER why we were here

He did.

He came back and said

The Doctor wanted some blood work then he was sure we could go home.

Because She didn't LOOK sick.

Within minutes of taking her blood the doctor came back in

He said her white count was EXTREMELY HIGH

and "He didn't see that coming cause she doesn't look sick"

I totally pulled my best I told you so look

and rolled my eyes...

Then reiterated (in an exasperated tone) that

how she "LOOKS" has nothing to do with how sick she is.

Yes it was rude I know, but he wasn't nice and kinda deserved it...

Anyways then her heart rate started to go high and her blood pressure rose

and her temp started going kinda crazy.

One minute she is bright red and sweating and the next she is way too cold

She started swelling all over for no reason

They sent her for a chest x ray to make sure her lungs were clear

AND GUESS WHAT

her port is back in her heart!!!!

how does that even happen??

Was it not fixed last time this happened?

They have to pull the whole thing tomorrow.

They also know she has a raging infection somewhere but they don't know where.

They are afraid its in her port...

that would be bad!

All I know is she is sick and they don't really know why

And she has to have surgery tomorrow

And Anesthesia is incredibly dangerous for kids with Mito

She has had bad reactions to it in the past.

she could really use some prayers

and if I'm being honest... so could I and Shaun too.

Holland...

So this post was SUPPOSED to be all about how good Lily was doing after a tough week. But as is always the case THINGS CHANGE QUICKLY. I had planned on a bunch of pictures and video of Lily smiling, and playing with her toys. But we are back in the hospital so this will be about the past week and how we got here yet again.

Last Thursday Lily had another procedure under anesthesia. She had an EGD, a sigmoidoscopy, and they had to remove her excess granulation tissue from her stoma. The EGD, and sigmoidoscopy are just probes with cameras that go down her throat into her stomach(EGD) and the other goes up her bum looking at the intestines (sigmoidoscopy). They took biopsies and pictures. It was her second time doing these tests. They had thought she had an ulcer inside her stomach but it turned out to be a HUGE amount of Granulation tissue. Granulation tissue (GT) is tissue that grows like a bubble out around the stoma. The stoma is the hole in her tummy that the g tube fits in. GT is painful and red and grows very quickly and bleeds easily. In most kids getting an infection in the stoma or in the GT is extremely rare but in Lily's case its kinda unavoidable...

Anyways, they burnt off the GT and the scopes went well, no complications...yet... Lily has a history of having delayed bad reactions to anesthesia. This time she woke up was fine for an hour then vomited everywhere. They assumed it was just the normal queasiness associated with anesthesia so they gave her zofran and sent us home. Over the next three days she kept NOTHING down. Friday night I was able to get her to tolerate pedialite at the lowest rate possible 1oz an hour continuously for 24 hours. It kept her hydrated so we didn't have to go to the hospital for an iv.

On Saturday She fainted twice. We are pretty sure it was just lack of calories. She had super loose stools. By Sunday she was keeping food down and the diarrhea had stopped. Monday she was playing and Tuesday her color was back. I thought we were free and clear... Hah... I should know better by now.
Wed morning the skin around her g tube was streaked angry red and was hot to the touch, her fever was back. Which meant her infection was back. Then she started vomiting again and had the worst diarrhea I have ever seen. She went through 8 outfits in 2 hours. But with the severe diarrhea the redness went down. It was like the infection ran right out of her. After that I stopped putting clothes back on her... The doctor was able to call in an admission for her so we could avoid the ER. So thats where we are.
Honestly the thought of coming here today was torture. I cried the whole way here. I hated the thought of being stuck in the little room and putting Lily through more pricks and prods.
The brightly colored walls close in so quickly. But we arrived and they sent us to our room and the simple acceptace of my situation settled in. I am not extatic to be here, Not even close. But I am accepting of where Life has landed us. A few different times I have come across a poem that describes exactly how I feel most days. Especially today...
Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.