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!

Hmmm...

Feeling isn’t a bad thing.

In dealing with my recent anxiety I’ve picked up some good advice.  While talking with a trusted counselor she pointed out that I answered most every question she asked with, “I think….” In the context of our conversation it was like a bolt of lightning struck.  The point she was leading me to was the fact that although I’m always ‘thinking’ about what our next step should be…. or ‘thinking’ about this or that- I’ve kind of lost touch with what I’m FEELING…..(and honestly sometimes afraid to admit what I’m feeling).

I know it’s very true.  I have not so unique ability to turn my feelings off.  In order to cope with some of the situations we’ve been dealt  ---I just tune out.  I stand back and watch myself acting out the motions…. I do what needs to be done to make it through the moment…the day…the week.   In fact, I quit feeling.  At some point that all comes back to haunt me and I eventually HAVE to FEEL.  There are so many more revelations I’ve found in (my less than ordinary) counseling but I won’t dwell on them here. 

What I want to share is that I’ve found support from people that I never even imagined.  I’ve found that I’m definitely not the only one….

Anxiety stems from fear.  I need to be aware of  where the fear is actually coming from, feel it, and deal with it………How?  Lots of trust and faith in a higher authority is all I can say!

A huge part of my fear comes from not being able to ‘fix’ everything……If I read enough; search enough; find the best doctors; befriend the best nurses; seek the most therapies; if I’m nice enough; smile enough; all-together enough;  thoughtful enough; if I pray enough; bargain, plead, and cry enough then it will all be ok…..  Somehow everything will magically fall into place.  Now, I know that is not how life works, but still…somewhere in my subconscious it’s all that drives me.  It’s who I am….and if I can’t be the peace-maker….the one who fixes things…..then who am I, really? That’s a huge part of the fear. 

That….and fear of the unknown……

When I think about Zeta and the unknown it leads me to think about every single important part of my life and the unknown…..my boys….my marriage…..Stevie..…my parents…every single thing that is important.  It makes me realize that nothing in our earthly life is promised.  At times, that can be a very overwhelming feeling.  At other times it solidifies the appreciation I have for accepting the choice of salvation and all the Heavenly promises that abound. 

I think too much.

I’ve spent the past few weeks getting back to feeling….and it’s not so bad. 

We’ve accepted the services of Hands of Hope.    The layer of extra support from Odessa, Mollie, and Tabitha have already enveloped us.  We still have the extraordinary support from Lavonya( Zeta’s home nurse)…..our families …..and all of the prayers that each of you surround us with….

I still believe that circumstances are greatly impacted by attitude and choice so I will continue to believe things will never be as bad as they could be…. and I will continue to put on my happy face to the best of my ability, but I will allow myself to feel more….and I’ll continue to try to live each moment with my family and my children as if they were numbered…..I will try not to wish for the magical fix because I know there’s already a Plan in place that is Divine………

Zeta had some minor procedures on Friday.  We finally had a port placed.  This should provide tremendous relief for her tired veins!  They took another look at her airway and did more injections to her salivary glands.  No real new news.  Surgery was a breeze and they even let us come home the same day (that’s a first)! 

Saturday evening Zeta was starting to feel a little under the weather.  Well….the past few days have been eventful to say the least, but we’re dealing.  Seizures have continued to be very troublesome and we’ve dealt with some respiratory and feeding issues.  Thankfully, our plans of staying out the hospital with extra support at home are paying off so far!  Your continued prayers and support are truly appreciated!

We’re so very thankful for all the people that have been placed in our lives (especially the past few years).  So if by some chance I have failed to ever personally thank you for your part (however big or small)  please, please know how grateful I am that you’ve been a part of my life!  I’m mindful every day of the ways that I am blessed!

And now, Lord, what do I wait for and expect? My hope and expectation are in You. Psalm 39: 7

Let the young rain of tears come,

Let the calm hands of grief come.

It's not all as evil as you think.

~Rolf Jacobsen

I don’t quite know where to start.

After the information I shared in my last post I’m at a loss for words myself. I’m still kind of shocked that I shared such a personal experience to the world, but I’m glad that I did. 

The least I can do is thank everyone for their heartfelt words and prayers of encouragement.  I don’t know where our family would be without the firm foundation of support we rely on so much!

This whole month has been filled with ups and downs!  Of course, in life I suppose that’s nothing really new.  Zeta has continued to have less than great health.  Nothing crazy, but enough to disrupt her respiratory status at times and increase her seizure activity.  The culprit seems to be her ears.  In all honesty, I don’t think she has made it back to her completely “good’ status since her big seizures back in March.  We’ve been in discussion with neurology and are consulting with her team in Phoenix too.  In theory, we should be traveling back to Phoenix for her one- year follow-up from surgery….but unless they can do something life altering there that can’t be done here, I just don’t see putting Zeta through another medical flight and all that goes along with getting her across the country.  It goes without saying though, if they were to call and tell me that they had another magical fix we would be on the next flight out there.  We were blessed to see Zeta in the best health ever for a few months after surgery…..My prayer is that we’re able to get to that point again!

In the meantime, we’ve stopped her immunizations again (another reason to keep her confined) and have drastically reduced her therapy schedules. In reality, she hasn’t been able to attend therapy as scheduled for a few months due to her health, but we’re trying to eliminate as much stress for her as possible.  This has been a hard step for me.  With my early childhood background, all I can think is repetition, intervention, education……..what I really need to accept is that we have to get her healthy first….and then we’re going to take it slow……

We met with the the geneticist (only a 3 hour appointment) again this month and had the labs drawn to go to Baylor for the Whole Exome Sequencing.  It will take four months to get the results back.  Hopefully, we will gain some useful information from this. We’ve also scheduled Zeta’s next surgery.  Nothing major, just the annual airway stuff and they’re going to place a broviac (in simple terms it’s a permanent type of access for blood draws, medications,etc.)  There have been various times we’ve been in discussion about Zeta keeping a line in for home use.  The pros are that we’ll have more permanent access so that means less needle sticks for Zeta, and we plan to utilize the access to facilitate her staying out of the hospital more.  The big drawback is the risk of infection.  I think that is the major thing that has kept us from coming home with a line in the past (that and the fact that we’ve never really had a definitive diagnosis and the hope has always been that eventually she would not always need all the medical care she requires). This should all be a simple, overnight stay, but please be in prayer for Zeta…for the doctors and staff….for our family. I keep telling myself, “It’s not brain surgery.”…..but in Zeta time it has been a while since she has been under anesthesia and I’m getting myself a bit all worked up over it!

In the rest of our real life – Steven contracted cellulitis in his leg somehow so we spent Sunday at Doctors care.  Of course, all I could imagine is the flesh eating bacteria that has been all over the news lately.  Thankfully, though, the antibiotics seem to be working and his leg is looking better. By Monday, Chancelor had a fever and a sore throat.  I just had to laugh (he’s ok)…….but I had to laugh, and then THANK GOD that I don’t have 3 chronically ill children!  I realize every day that in comparison to many others we live a very blessed life, but that doesn’t mean that there aren’t moments every day that overwhelm me. 

I’m still working on me.  Some days are great.  Some days, I don’t want to get out of bed.  Every day, I feel selfish for how I’m feeling and I feel guilty for everything that everyone else does for me.  Every day, I try to remind myself of how good we really have it.  Every day, I look at how much everyone around us strives to make our life the best that it can be…..and EVERY day…………..I’M THANKFUL.  Regardless of how many ‘why me’ moments I have- I KNOW that I’m blessed.  I know that God has given me the gift of LOVE, the gift of FAITH, the gift of HOPE, and the gift of another day with all those that I love.  My prayer is that I never lose sight of this….what is truly important!

The last of the human freedoms is to choose one's attitude in any given set of circumstances.

~Victor Frankl

It happened

Honestly, I would much rather keep all of this information to myself.....but I suspect if I am going to fully heal I will need to purge my feelings....and if I plan on helping another soul I'm obligated to share, right?

 

Everyone saw this coming……..except me.

Ever experienced a panic attack?  In the past few years I’ve experienced waves of panic that I was able to talk myself out of….  I mean, I don’t have time for a nervous breakdown.  I’ve always been successful in my positive self-talk…..until the other day.   I cracked.  I mean, I had a full blown Green Mile- John Coffey-  evil expelling type of attack.

There was no particular trigger.  It was a normal day.  I was getting ready to feed Zeta. Then I started to feel dizzy.  This had happened infrequently over the course of the past couple of years, but just this week it had been worsening.  On this day, I couldn’t make it stop.  I couldn’t get a sense of relief.  The images of the room ran in and out and I fell.  I feared I would black out and no one would be here to take care of Zeta.  Then I couldn’t breathe.  I managed to call my mom, but couldn’t get any words out, then I fell again.  Then the wails and screams started. They seemed to emanate from the depths of my bowels.  I was very aware of everything that was going on, but I could not control it. I couldn’t make it stop.  I couldn’t see, I couldn’t breathe.  I couldn’t make it ok. I felt selfish, ashamed, helpless.   I kept trying to tell everybody I was ok, that I could breathe, but I couldn’t breathe…… but in my mind I wondered if I was going to pass out or if they would take me to a mental health facility. Then the bolts of numbness in my arms and legs…..maybe this isn’t a panic attack, maybe I AM having a heart attack.  What if I die?  What about my children, my husband, my parents?

Needless to say I went to see a doctor and we’re working on getting the help that I need.  What I feel most is embarrassment.  My mind was raped, and my soul is still struggling to recover.  What I fear most is that it will happen again.  All I want to do now is stay in bed and crawl under the covers.  They say it’s a battle of depression, but I don’t feel depressed.  I feel as though my body failed me.  That my control left me…..and now I have to pick up the pieces. 

I, of all people, do not have a right to experience anxiety.  I have the most loving husband and children.  A family that would move mountains for me and a team of support that encircles our family every day.    Frankly, other people looking in don’t see it that way.  Doctors were trying to medicate me just after Zeta was born.  My mom has encouraged me ‘to go see about myself’ for quite some time, even some of Zeta’s therapists and care team have subtly encouraged me to do the same……As a matter of fact my mother-in-law started telling my husband to watch me closely two weeks ago because I was going to have a nervous breakdown (little did I know) but I didn’t feel depressed or anxious.  Sure there are moments, but who doesn’t have moments?  This shouldn’t have happened to me.  I’m a self-proclaimed expert in coping skills and self-help techniques.  The queen of calm……..BUT it happened….it happened to me…..and you know what?  I’m going to be okay.

No one thinks panic or anxiety or depression should happen to them.  I’ve witnessed its affects (and effects) first hand.  I’ve seen panic attacks, and now I’ve experienced one. I’ve listened as friends or co-workers talked in hushed tones about their loved one battling depression or a breakdown.  It is real.  I’ve always believed that, but until my own experience I did not realize what an impact it truly takes on your mental AND physical being. It is a very intimidating, isolating feeling.  It can make you physically ill and also make you feel like the most self-absorbed person on earth. It not only hurts you but the ones around you.  So, please if you’re dealing with it please get help – medical, physical, spiritual…..I believe these all have strong components in healing.  If others turn you away or minimize your problems keep looking for help.  Surround yourself with positive energy…..and pray. 

Don’t look down on me for what I have shared.  Don’t give me pity.  Don't go ask my mom or grandma how I'm coping.  Just surround me with love and support.  Love and support and pray for my family…for Stevie, for my boys, for Zeta, for my parents, grandparents and my sister and her family.  We’re all in this together and I know God will lead us through.

PS Please don't take it personally if I haven't responded to texts, phone calls, etc.  I've had my phone and computer turned off and just trying to let my mind and body rest.