Faith

While we can't always choose our thoughts, we do have freedom to choose on which thoughts we dwell.    ~Norman Wright

I wonder how long I will have an issue with the month of July.........

Zeta's first "big" seizure episodes began in July of 2010.  She was status epilepticus and went into septic shock from a kidney infection.

In July 2011 Zeta had brain surgery.

This year, in July, she ended up in the hospital for feeding intolerance, seizures, bleeding in her trach and maybe her belly, and lots of pain.

We've had countless admissions between these events - but the July admissions just seem to carry a heavy burden for me.....maybe it's the fact that July is the 'deadliest' time to be in a hospital.....maybe it's the fact that July 2010 was the first time we ever saw Zeta that sick.....maybe it's because it was the first time I felt we may lose her and the looks on the faces of the doctors and nurses around us led me to think they felt the same way......those are some of the toughest memories.....

Whatever it is I'm just a little leery of July and I'm kind of glad it's almost over! (I know I shouldn't wish my life away!)

Last Monday Zeta's neuro team in Phoenix met.  They concluded that there is a suspicious area in a ventricle near where the tumor was removed from her brain.  There is nothing they can do surgically for this.  Gamma Knife radiation was suggested as a possibility -although they aren't sure it would alleviate Zeta's symptoms.  The GK team met on Friday and we will have their recommendations early this week.

Regardless, we try to remain positive and keep our minds on the present.  Nothing is gained by  worry over what has passed or what may or may not come.

Our prayers are that we  make the right choices...that we can gain control of Zeta's symptoms and keep her free from pain....We pray we are are able to meet the needs of Steven and Chancelor and give them the attention they desire and deserve.

Although, I have many, many selfish prayers.....and sometimes I want nothing less than for Zeta to be completely healed......for her to be a typical two year old running down the hall and bumping her head.....crying for Mommy and Daddy.....laughing at her brothers or knocking down their toys....for our family to go outside and do things together.....to go places together....all together...as a complete family.......I do pray selfishly for those things that I want....... want so badly that I feel as though my heart could break....but....but I continually try to remind myself that there is something greater at stake....that our lives has been immeasurably impacted.....that so many truths have been revealed and many lives touched....I look into the faces of the three greatest loves of my life and know that I should not dare ask for more....I try to remember to pray for His will and not my own.  As difficult as it may sometimes be -I know that the Greater Plan is much better than my own........

In the same way. the Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit  himself intercedes for us with groans that words cannot express.  And he who searches our hearts knows the mind of the Spirit, because the Spririt interceds for the saints in accordance with God's will.  Romans 8:26-27

Home again!

Stevie found this in the paper and left it out on the table for me last night....

talk about encouragement LOL!

Sometimes you have to resign yourself to find some humor regardless of your situation!

We came home yesterday.  Zeta had a good night and seems to be having shorter periods of agitation.  We haven't seen any seizures today and right now she is resting.  We never found a clear answer as to where the pain was originating and all the blood from her trach seemed to resolve on its own.  They increased one of her seizure meds and sent us home with some pain meds....so from all of that something seems to be working!  I'm anxious to hear input from the BNI team regarding their thoughts on the seizures.

I want to thank everyone for their continued prayers and support and all of your words of encouragement.  We are continually humbled by the kindness we are shown! Our families, friends, acquaintances and even strangers have made this difficult journey much easier to travel.

We're thankful for the wonderful medical support we receive.  We're thankful for our home nurse, for Hands of Hope, all of Zeta's specialists and hospital doctors.  It still amazes me how much Zeta (and our whole family) is treated with true care and concern. I'm sure in makes a huge difference in how we are able to handle things.  Zeta's hospital nurses and RTs were as sweet as ever. They all worked hard to help us muddle through Zeta's pain....Anna and Chuck were especially helpful and empathetic:)  They have an "APPLAUSE AWARD" at MUSC.  There have been a couple of times that I've attempted to nominated the whole ICU and PICU, but I'm not sure whether or not they accept those nominations because it seems to be an individual award..... so I'm going to make it my goal to try to eventually nominate each nurse, therapist, and doctor that has worked to make our lives better.  They deserve it! I can only express sincere gratitude for the  outstanding care that we consistently receive!

So....we're home.....and we'll continue to work to make life as comfortable as possible for Zeta.....and to strengthen our bonds as family.  Thank you for keeping us in your prayers!

Still searching...

Quick update:

Zeta had a better night. (Thank you morphine!) However, she awoke all miserable again his morning so she did get more morphine.  The G-J tube seems to be going well.  She tolerated the small drip of pedialyte over night so we plan to switch to a small drip of formula sometime today.  Her bowels have finally started to have some movement and we haven't seen any more blood from the trach or her feeding residuals.  She continues to have issues with seizures and still seems to be in a good deal of pain.  They've given a loading dose of one of her seizure meds and increased the usual dosage.  Her neuro team in AZ is meeting about her on the 23rd so hopefully with so many good heads (MUSC and PCH/BNI) together we can come up with a better seizure plan or maybe even figure why things went so well for so long and now seem to be going back to how they were prior to brain surgery.  They're continuing to run various tests and look for a source of the pain/agitation. Thank you for continued prayers!

what a day

I'm thinking if I start and continue this blog now it's going to turn into one big rant or rave with a pity party to follow.

Let's get this straight - I am not divulging any of this to get sympathy.

I'm venting because I feel like I need to SCREAM at the top of my lungs about how unfair life can be.....and not necessarily for me, but for my children!

Zeta had a horrible night and today was not much different.  She just seems to be in so much pain.  It is so unlike her to be so agitated - especially for days on end.

She's had loads of diastat, versed, and tylenol over this past week, but nothing has  really seemed to help.

The medical staff has been working hard on trying to figure out what's wrong.  ENT scoped her this morning, but didn't find anything too impressive.  They could see some bloody secretions, but no active bleeding to give them any indication that all the blood that has been coming up out of her trach is from her upper airway.  (I do have to add as a positive side note that she has not had the large frank bleeds since we've been admitted).  Anyway, it's possible that it was something that resolved on it's on or it could be coming from the lungs.  Pulmonary stopped by  and told us that if the bleeding started again we could do another bronch and look at the lung tissue.  Hopefully, the blood is behind us. Zeta's labs aren't really showing anything remarkably different than what they usually do - just the usual anemia, dehydration, etc., but she has still been in an obviously large amount of pain.  They've ruled out uti and pancreas issues.  She had another renal ultrasound and it wasn't dramatically different from the last.  The PICU docs explained that sometimes kids with chronic health issues just have digestive systems that eventually 'give out'- basically decide to quit working for good.  We've dealt with feeding issues in the past and have discussed the possibility of changing her feeding tube from a G-tube to a GJ tube so today Zeta had the GJ placed.  Basically the feeding will go past her stomach and should be easier to tolerate......fingers crossed.  We just started a very slow drip of pedialyte and the morphine Zeta got earlier seems to finally be helping her be calmer than she's been in days. We still have no clear cut answers and we still don't know if the GJ will be the answer to our problems....Zeta was still trying to throw up on the way to radiology before they placed the GJ - and that was without any food in her belly since Wednesday morning....and there's still some flecks of blood in her residual. Please pray that it helps and that Zeta's pain and agitation will cease.

Well, that's the Zeta part of the day....now I need to tell you the Chancelor and Mommy part of the day.  At the very same time that Zeta was being taken down for the stomach studies and renal ultrasound Chancelor was on his way to the doctor with a big, black, bulging 'thing' on his leg.......MRSA.......AHHHHHH......My first thought was - "oh wow, I need to go clorox my whole house.....my second thought was -'nah this ain't real". It didn't really sink in about what was actually going on until my mom told me they had to cut out the infection and pack the wound.......Can you say LOST IT????????  I mean I had two children having two pretty important things done at the same time and I couldn't be there for Chancelor.  I felt like I deserved terrible mother of the year award:(  I couldn't quit crying about it......until I saw him.

What a brave boy I have......When I caught up with him at the store he was just as happy as could be....he just said he really didn't want to talk about it....Needless to say he was showered with lots of love (and a few toys)....

...then we took him to Krispy Kreme where he had the best time enjoying his doughnuts....

I am so thankful for my mom.....she held my baby through his pain and made everything ok when I couldn't be there!

I'm thankful for Zeta's nurse today....she encouraged me through my  melt-down and even made me laugh at her antics.....

I'm thankful for hospice and the support they give......

I'm thankful for all of my friends and family and God above - all the people that give me sanity and bring me back to reality......

I'm thankful for a special visitor today who is in the hospital with her own little one (after heart surgery) but still made time to come check on us.....as she said - there's no way to fully understand this life until it's actually yours............

I'm thankful that I can actually make it through my rants and see the other side.  I know how much even this moment means....and for that I'm thankful!

Get by with a little help....

My view tonight.

Boy, I haven't missed these nights in the hospital.

It's been April since our last admission (woo hoo)!

That's partly in thanks to Zeta's home nurse and the help of these two ladies from Hands of Hope:

It kind of looks like we were having some sort of late night techno party.....

It was late.

Much later than midnight before they got to leave.....

but we weren't having a party....

Really, we weren't.....

These two sweet girls were up late last night helping me keep my sanity and helping my baby girl stay out of the hospital one more night!

Unfortunately, Zeta had other plans (she usually does)...

She decided she needed to share the love with her friends at MUSC (see - they love her too).

Ah well.....

There's a possibility of a uti (that's nothing new, seems to be the usual for Zeta sometimes)

She's been bleeding from her trach

and

 from her tummy.

She can't tolerate her feedings and she's been just misreable!

Potassium was dangerously low again (even with the supplement she's on)...

Seizures have been a little crazy!

And I don't really want to talk about it.

(and technically that's nothing new for me either...I don't like "talking" about anything that worries or upsets me.)

...but I'm not 'talking' about it.

I'm writing about it.

I know there are always lots of prayers for my sweet baby girl (and our whole family).....but I'm asking again!

2 Corinthians 4:16-18

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.



She likes to stand!

Take a look at this!!

My baby is standing.  That's right, standing!

and here.....her big brother is teaching her the finer points about Transformers.....but he did give in and let Zeta's baby play too!

Thanks to funds raised by Team Zeta we were able to purchase the Bantam Sit to Stand.  I cannot put into words what I felt when I saw Zeta stand for the first time.  It opened a whole new world for her and she knew that something was 'different'!  Steve agreed with the enormous feeling of pride, but he said that at the same time it was disheartening that we don't know if we'll ever see her stand on her own.

We've been working to get approval for the Sit to Stand through insurance, but we had already been over six months into the process so we decided to use some of Zeta's funds for the purchase.  So far we're happy that we did!  I understand the idea of 'medical necessity' and a lot of the red tape with insurance, but what the executives behind the desks making all the rules don't realize is the need for quality of life for children like Zeta.  Anything that would IMPROVE her life is something that we need - and we need it like yesterday.

Children like Zeta don't  have the luxury of waiting..... and any moment that can bring and enhance experiences has potentially vast benefits.....which makes me think of other children who don't get the proper medical/other care they need due to dictatorship and partnerships between insurance, companies, and health care systems.  I would consider our family seriously very lucky in this area.  Zeta is covered by private insurance and a medicaid waiver for disabled children.  All of the drama surrounding the current health care legislation and crisis certainly weighs heavily for us on both sides.  There are certainly things that would have had to been done differently had we not had private coverage for Zeta and there are many ways that the medicaid coverage has kicked in to alleviate many of the financial burdens...still would you believe there have been times we've had to pay hundreds of dollars for a certain medication that Zeta needed, but could not get coverage through either party.  Due to her unique make-up Zeta sometimes has some -let's say, different  medical needs.  I've been through trying to wait a day or two for the authorization for payment to go through with the pharmacy before getting the medication but then when we ended up with an emergency admission  a few days later because she had not had proper treatment (the medicine we were waiting on) I decided I would never ' wait' on anything ever again if we there were any way at all that we could help it.  Zeta's nurse and I were discussing the issue of Zeta's everyday medications.  We estimate the cost to be close to $10,000 a month.  Yes, you read that correctly - TEN THOUSAND dollars per month (no that's not out of pocket - what person could afford that?).  Sounds crazy doesn't it?  But I can't help thinking of all the babies....all the children that are uninsured, under-insured- or who have parents who haven't learned to navigate the system or who just don't care.  It's heartbreaking.  We're very fortunate in the fact that we've been able to be with Zeta through every admission and am able to help care for her at home.  We're fortunate that we've developed strong relationships with all of her doctors, nurses, and therapists.  We're fortunate that we have PSA and the good people at Hands of Hope.  We're fortunate that we have the support to make this a reality and that we are able to give Zeta the best life possible. None if it would be possible on our own strength alone.  God is deserving- first and foremost...then our families.....our medical families....and all of our friends and the network of Team Zeta!


Well, so much for a short post - I thought maybe I would move toward making my posts actually more 'blog' like - whatever that means....you know a short thought for the day everyday?  I don't think that's possible for me.  I get on a topic and just keep going and going...and going.... so maybe I'll stick to my 'short story' versions.  For example, this post was intended to be a snippet of Zeta in her stander and it turned into me getting onto my insurance soap box (at least I didn't get too carried away!)  I'll step down now....and we'll see if I get any better with the short blogs or stick to the story stories!

And the LORD said, Behold, there is a place by me, and you shall stand on the rock.

Exodus 33:21

Exciting. Excrutiating. Painful. Insightful. Thrilling.

Five words that make up the roller coaster ride of this week......(and our lives!)

We've spent the week at the beach.  Zeta's nurse came and stayed a few days too.  During that time Stevie and I were able to spend a lot of quality time with the boys.  We went boating, ice-skating, and shopping - among other things.  We had so much fun together and were happy to finally be able to do some fun family things (while not having to do it under the guise of a hospitalization). 

 It was a much needed reprieve for us all..........except there was one thing missing.....a pretty big thing.......our daughter.

In the midst of being so thankful for the time we were spending together doing fun things it caused me to pause and think about our life 'before'.  These were normal family things we used to do together.  Now, I'm much more appreciative when we're able to enjoy such blessings.   However, I still have this intense aching in my heart that my baby girl can't enjoy the fun with us....like somehow, we're still not complete.....she's here...she's home, but she can't go out and enjoy things like other 2 year olds.


There are a million things I should be thankful for....like, perhaps the fact that we are managing much more of Zeta's care at home....we've had a couple of calls this week in which doctors were close to asking us to come in, but for now we're still holding our own.  I don't believe we'd have that opportunity if it weren't for the support and care of Zeta's nurses from PSA and Hands of Hope. 

Another thing to be thankful for?.....we wouldn't be able to have a somewhat 'normal' vacation if it weren't for my parents allowing us to overtake their home - fill it with our mini-mobile ICU unit complete with equipment and medications and nurses coming in and out.  We would not have been able to enjoy time with our boys if it weren't for Zeta's daily nurse agreeing to come work with Zeta at the beach........maybe we wouldn't even have the right to care for Zeta at home if we didn't live in a free country.....if so many people didn't put their lives on the forefront to ensure freedom for all of us.....freedom to believe as we choose......


Of course, by now you know how I choose.  I choose hope.  I choose faith. I choose God.  Does it mean I'm perfect? NO   Does it mean my life should have no obstacles? NOPE  Does it make me better than you? nu-uh   What it does mean is that I choose to believe that God is real.  That everything in our earthly life has meaning and reason.  I may not understand it.  I may not always like it.  I might even annoy the mess out of God by questioning it sometimes, but you see- this is where faith steps in.  I can have honest conversations with God and throw my fit at the seeming unfairness of it all.  I can question.  I can weep..... because in the end.....in my heart.....I choose faith....and that faith leads me to believe that none of this is in vain.  That it was all taken care of many years ago up on a hill on a cross.   There are constantly things working that are unseen and so much that I've already known and experienced.  I choose hope and I choose to know that pain will one day be erased completely.  I know that I'm not alone and I see (at least partially) how God has been at work throughout all of this.

We used to have a pretty normal life.  We did normal family things.  We went places together.  We played together.  We felt we had it made and we were thankful (or so we thought).  Our life now is different.  It's definitely not what one would call normal, but .... believe it or not.... there is so much more to be thankful for.  Sure, there are moments we find ourselves wishing it were different....but for me atleast... there has been a lot of growth, a lot more nurturing, a lot more understanding and a heck of a lot more thankfulness for all that we have....and much more understanding and love.  A lot less focus on the material and much more on the spiritual....and the love in our lives.  They say being thankful and having faith is easy when everything is going well.....it's not until that faith is tested that you find out who you really are.....I believe there are no truer words.  

For me, I've never had a problem proclaiming my faith.  However, it wasn't until I felt completely broken that I truly realized how much faith is a choice.  When your world comes crashing down you ultimately have two choices.  Continually curse the force that drove it and wallow in the sorrow or choose faith....choose that that very same faith leads you to what it is you need to learn. Choose not to be beaten.  Choose to follow Him.  It doesn't mean that everything magically falls into place or gets fixed.  Faith doesn't guarantee earthly healing (I know better than some that we, as humans, wish that it did!) Faith is never being alone.  Faith is being able to make it to the next day when you absolutely knew that this day would kill you.  Faith is choosing to hold on to Him even if you're not sure.


I know a little about faith.  I know I would not cope without it.  I know its what drives me. 
I know that faith has made me more appreciative of my life and my family's situation.  It is mine and I own it.  I take responsibility for it. I will continue to choose faith and choose hope.  I will continue to be thankful for all that we are and all that we have. 

Without our loving families and extended family our lives would be much more difficult.  Without the medical care Zeta receives we would be in a much different situation.  Without the doctors and nurses that let me cry on their shoulders (without telling me I'm crazy) I wouldn't be able to continue being Zeta's strongest advocate. Without the all the therapists we would lose another layer of support.  Without you - the one reading this- I wouldn't have anyone to share our story. Yes, my view of life is much different now than it was just a few years ago...........and I wouldn't have it any other way!