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!