Lily is two!!!

Lily turned two on Jan 20th!!

My baby girl isn't a baby anymore!

She had an Elmo themed birthday party

 Her cake was done by Cup'n Cakes through Icing smiles

Icing smiles is an amazing non-profit organization that donates birthday cakes for medically complex kids. This cake was amazing!

The lady donated her time and resources so lily could have such an awesome cake.

Now she couldn't eat any of it BUT it made her smile so much and she wouldn't stop looking at it.

You can visit Cup'n Cakes fb page by clicking here if you are looking for a cake artist anytime soon:)

 My Elmo fruit platter...

I was very proud of this!

 

 

ELMO CAME!!!

She was SOOOOOO happy!!!

 She wouldn't let Elmo go!

 even when she was coloring she had to hold on to Elmo so he couldn't leave

 She had to sit on Elmo's lap to open presents

She did let go of Elmo to play 

pin the nose on Elmo but immediately ran back to Elmo again.

She was one happy birthday girl!!!

Thank You to "Elmo" who donated her time to see Lily smile!

And Thank You to everyone who came and helped us celebrate the miracle of Lily's 2nd birthday!!!

Puppet show

Here is the "puppet show" we did for the vEEG techs...

You see it as they would see it... kinda

and the storyline is left up for interpretation...

enjoy.

Seizures = stay #25

So we made it a WHOLE MONTH!!!

We were released from the hospital on Nov. 28th

and we didn't have to be admitted again until Dec 28th!!!! 

ITS A NEW RECORD!!!

Let me catch you up on why we are back.

On Dec 4th Lily had a full shaking/twitching/ eyes rolling/face contorting, heart racing seizure 

(actually I am supposed to say "seizure-like event" because she hasn't been diagnosed with seizures yet... but for purposes of this blog I am just gonna call them seizures...)

So She had this "seizure" and I called her Neurologist IMMEDIATELY

to see what they wanted me to do because in the past when she had had

probable seizures they just looked at her in the ER, wasted 6 hours of our lives and sent us home.

I didn't see why this would be any different so I called her Dr.

Well On DEC 7th they finally called me back and said they wanted to do a 3 day EEG, 

and they would set it up and call me back.

I waited a few days and no call so I called them.

No call back.

Lily had another smallish seizure in her sleep.

I called them and

NO CALL BACK.

Finally on Christmas Eve Lily was acting weird, really really uncharacteristically hyper/obstinate and almost aggressive.

Then before I knew what was happening she was twitching where she stood then went rigid and fell like a tree, breaking her fall with her face.

She was unconscious but breathing and was twitching all over.

When she woke up her face was swelling up and she was acting like she had a concussion so we took her right in.

There was no concussion and no broken bones so they sent us home.

I called Neuro to let them know. 

They didn't call me back.

I decided I was done playing games with Neuro and called and Emailed Our AWESOME PCP

She emailed me back and said she had contacted the on-call neurologist and He would call me.

He did call and said he wanted to just try some anti-seizure meds.

Well I told him to call it into PCH's pharmacy since we had a GI appointment there 

that morning anyways.

We went to our GI appointment and Lily started acting odd.

I looked at Lily's nurse and at her GI and said "she's acting like shes gonna have a seizure."

Within 2 minutes

she was rigid and was turning blue and she went unconscious

it was only for a few moments but it was long enough to scare her Dr.

She sent us right to the ER.

While this was happening Lily's PCP had been trying to contact me to tell us to admit her to the hospital for a multiple day EEG anyways.

Her PCP was sick of waiting on Neuro too,

so we went right to the ER where they admitted Lily for hospital stay #25

The started the EEG with Video this morning.

 

So We are just sitting here waiting for the EEG machines and Video monitors to do there thing.

I must admit It is odd being watched 24/7 by video. 

The Little camera follows Lily's every move...

We may have to create a puppet show for the poor person sitting watching us tomorrow.

It really has to be boring watching us... 

Yes I think an impromptu puppet show is in order!

:) even if it is annoying to our "captive audience"

I am sure it will entertain us and make Lils smile!

Clearing The Air and a sincere Thank You

I feel the need to clear the air about something.

 

I only hope I can put this right...

 

I originally started this blog,

and subsequently the Life with Lily FB page, as a 

therapeutic way for me to deal with what was going on with Lils,

and as a way to keep family and friends as knowledgeable as they want to be

about whats going on with Lily.

I felt it was much less "in your face" than updates on my personal FB page 

and I just don't have enough time to update on the phone with every new symptom...

 It also allowed me to journal it all so I can look back and give Drs exact dates when certain things happened and it has even helped show a few patterns so we can begin to "guess" when she might go into a metabolic crisis.

As This blog has evolved, and ESPECIALLY with the addition of her Life with Lily FB page,

I have found it has helped other parents who are struggling with similar issues.

I have met other families of little warriors and they have helped buoy me up

when I felt I was sinking.

It has helped us benefit from hundreds, if not thousands, of prayers said on her behalf.

 

This Blog is very very very personal.

I write things that I would probably NEVER say out loud,

but I choose to publish it for all of the above reasons.

This Blog IS NOT

to "play my violin" so to speak.

I do not expect nor want people to feel sorry for us.

And I absolutely DO NOT write this for attention!

I appreciate the kind feedback and the ((hugs)) and prayers.

They mean the world to me.

But I would gladly trade all the "attention"

for a cure for my baby.

There was a point in my life (before marriage and motherhood)

 when I was very young and immature

that I might have reveled in the "attention"

That is not me anymore at all.

I am all to content to stay in the background and watch

rather than be in the spotlight.

Honestly, I often fret over these posts, feeling It draws to much attention to our personal trials.

The things our little family is going through are very difficult

and I do not enjoy sharing my hardships and sorrows with others.

But I continue this blog for all of the reasons I mentioned above.

If nothing else It is something I can look back on and 

marvel at Lily's strength.

I often read over my past posts and am reminded how

very blessed we are

and how much WORSE it could be!

In addition, If it helps another mother know she is not alone in what she is experiencing

with her little miracle,

then it is all worth it.

I am grateful for the blessings of social media

and that it allows things of this nature to exist.

And please know,

I am humbled and honored by your love, thoughts, and prayers for our little girl.

I am so grateful for every uplifting comment, and every virtual ((hug))

Your kind words stay with me and bring a smile to my heart.

Thank you so much for all of your support.

And I cannot say it enough, but, THANK YOU for the prayers.

-Alex (Lils Mommy)

Some Not-So-Good news...

Lily's GI Tract seems to be shutting down.

she is barely tolerating 15ml/hr of gtube feeds.

She needs AT LEAST 45ml/hr to survive.

So we will be going home on TPN.

TPN is feeding a person intravenously, (IV) bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals.

You can read more by clicking here

I am VERY unhappy about this.

If we cant get her back onto g tube feeds this will destroy her gallbladder, liver, possibly kidneys and possibly cause more heart issues.

But at this point it is LITERALLY life or death.

So the good thing is TPN is gonna keep her alive

and it doesn't change HER quality of life all that much,

actually she is happier and has more energy when she is on it.

Its just The Long term effects of it that are really really bad...

 And her risk of infection has just increased drastically.

And then there are other added problems that come with having a port accessed 24/7.

Like what happened this morning for example:

We went up to the playroom this morning and Lily was VERY happy to be there

then she started grabbing her port and saying "OW"

I checked her port and the dressing was all wet,

which meant she had infiltrated

(the tpn and lipids had gone into her skin surrounding the port instead of into her bloodstream

I wrote a blog about this happening last time but it was only IV fluids not TPN you can read that post by clicking here)

I knew infiltrating TPN was BAD so I grabbed Lily and her IV pole and

all but ran back to her room.

The nurse saw me rushing and ran to ask whats wrong and 

all I said was "her port infiltrated, it's TPN"

That nurse called over to a bunch of other nurses as I got Lily back to her room.

By the time I had her in her bed and had gotten her shirt off there were 4 other nurses and 4 or 5 Dr's

and a couple techs all scrambling to help.

(I knew it was a big deal but had NO IDEA it was THAT big of a deal)

The good news was It had only just started to  infiltrate so there shouldn't be enough of the tpn

in her skin to kill all the tissue.

Yes, that's right ,TPN when it gets into the skin kills the tissue.

Then there was the issue of trying to save the port so she didn't have to have immediate surgery.

Luckily we were able to un-acccess her port (pull the dressing off and needle out)

and re-access (put a new sterile needle in and redress it) with only a few complications,

but after 3 or 4 scares her port was working again, so No surgery needed!

And the good news is her blood sugar stayed relatively stable the whole time!

The thing that really struck me was it took 4 people to un-access and re-access her

and they are sending us home with this for me and Shaun to do ourselves,

and that's assuming that Shaun isn't ever at work when there is an emergency...

They are planning on sending us home with nursing for 1 day a week

which helps but emergencies never happen on a schedule..

I am just a bit overwhelmed at everything I have to do for her medically now.

Her nurses here in the hospital get frazzled with all Lily has going on

(Her trach, g-tube, hypoglycemia, port, tpn, meds, therapies, Ivig, and such...)

 and they expect

me to go home and deal with it all by myself when Shaun is at work.

Yes, I am overwhelmed at the very thought...

But, it will all work out.

It just will.

God will make us equal to all that is expected of us,

all I have to do is lean on Him and He will get us through this.

I COULD NOT DO THIS with out my Heavenly Father.

It just would not be possible, nothing would.

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)