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!

 

 

 

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.

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.