Sun, Sand, Sparklers, and Summer Fun!

Since we've had Toby, we haven't been able to go on very many family vacations.  Part of it is because traveling alone as a family with a special needs child really isn't a vacation, and some of it is the distance (can't be too long in a car or on an airplane)...other reasons are the mounds of equipment that must be taken, and his medical needs. (We did fly on a plane one year with Toby to Texas!)  Some days I feel quite sorry for ourselves, especially when I hear of all the wonderful things that other families are doing, and that's tough, BUT most days we just accept things the way they are and do the things we can.  Last year it was a short weekend to Indy to go to the Children's Museum, this year it will be "stay-cation" stuff around here.

One thing that we do almost every year is visit my parents and extended family in Michigan. Up until this year I would never (I mean never) have dared to take him to a beach: trach, water, and sand don't mix and the thought of it scared me to death.  BUT, this year we did it!  I think part of it was because I've met other families that vacation with their trach/ventilator dependent child in Hilton Head all the time, and I thought - if they can do it, we can do it.  Another plus is Toby is getting more independent, less fragile, and he can communicate his needs.  So this year we decided to brave the beach. You have to understand when I mean beach...I'm talking about the fresh waters of the Great Lakes. I grew up on these beaches - camping, swimming, running, etc. - I never knew salt water until my sophomore year of college (don't get me wrong, I love the ocean, snorkeling, etc.), but going to Lake Michigan or Lake Huron are quite fun.  I also was very excited to go with some dear friends of our family - Stephanie and Yolanda (an adopted aunt and grandmother).  We have been doing "Beach Days" with Stephanie since I was a little girl - they counted the years up and it's going on 24 years!!

This year we went to Tawas State Park - where you can walk out in the water for to your chest and still see your feet.  When we plan a day at the beach, it's an entire day.  This year we arrived at 10:00 a.m. and left around 8:00 p.m.  It was great (even though the water was cold - think 60 degrees - enough to make your goose bumps have goose bumps), and we did get in the water.  We set up our camp, and the beach had a nice boardwalk all the way out to the beach so we wheeled Toby to the end and then carried him to our camp.  Caris and Toby took naps on the beach (our wagon came in handy for that with Toby).  The kids loved playing in the sand building sand castles, and we bought an inflatable boat for Toby to get on the water, but not really in it.  If the water had been warmer I would have taken him in, but he sat in the boat playing with water in cups that I would give him while my legs froze!  (not sure why this text turned black instead of white - still trying to figure out this blogging thing!)

Our visit to Grandma's also included some swimming at the cousins' pool, campfires, s'mores, sparklers, playing in the pond, and fireworks!!  We have had a lot of fun together, and I'm so glad we ventured to the beach with Toby - we will definitely do it again next summer.

A Stranger in My House

There are strangers in our house - almost 17 hours a day, 7 days a week.  You know that phrase "you can't live with 'em, you can't live without 'em"...well, it describes them perfectly.  I wish we could "live" without them, but at this point, I can't.  Don't get my wrong, most days I enjoy these strangers - they allow me the freedom to get things done without having to be a full-time mom and a full-time nurse to Toby...but some weeks are hard.  This week has been hard, so I had to make a list of grieving - grieving over for life not being normal.

Here are a few grievances this week:
1.  One nurse pointing out the white spots in my painting job - claiming in her note that she "knows I was looking for them" (I was not.)
2.  Little privacy
3.  Someone watching and critiquing almost every parenting decision I make or...don't make
4.  Related to 3 - but someone watching me lose my temper when all three boys are fighting (which happens to be frequent as of late - is it time for school to start again yet?), or Caris is whining and screaming (oh how I forgot what it was like to have a "normal" toddler) for two hours straight.
5.  Watching me lose my patience in the library today while Caris screams, Toby is purposely getting in the way of us trying to check out and just sitting over on that bench watching us...
6.  The conflicts they have with Toby - not giving him enough independence 
7.  Knowing when to step in and ask her to please do his care the way we do it so there won't be any conflicts
8.  Almost answering my front door when clearly I can reach it...
9.  Feeling helpless to change the situation
10.  Frustration because I don't have the energy or presence of mind to take care of all 4 kids by myself 24/7 and sometimes she is Toby's "stand-in" for myself...
11.  Not being able to cry and throw a tantrum because she's here..in the house...and at 4:30 p.m. when she leaves the urge to cry will be gone.


Okay - that sounds really negative, but this is the reality of our life.  Most weeks they are wonderful blessings, but some weeks they are frustrating annoyances.  I feel like a chicken penned in by the restrictions of their charting, med sheets...please can't I just raise my child the way I want to - can't we cath him in his wheelchair without worrying about your back issues?  It may well be time for a change - not sure what kind of change, but a change none-the-less.  I know that already my mind is working on and praying through a plan of care system to help Toby become more independent.  He is getting older and doesn't need to lay down in his bed for every medication given, trach care, and straight cathing.  It's time - praying that I have the courage and discipline to plan this system and implement it after our break away from all nursing care next week (much needed -  I know that God has orchestrated the timing of that).

I am going through a time of grieving again - grieving for what could have been, and for what has been lost - our life of "not normal"...I know God is there in the grief...and as my friend Jen reminded me through this scripture:
 
2 Corinthians 4:16-18 "Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us and eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Thank the Lord that this is temporal, and the hope of heaven is on the other side....trying to remember that these trsome days this "normal" seems too much to bear.  It oubles are momentary - just a moment in the light of eternity.  Trying to remember that others are dealing with far worse situations than myself, I can't complain...but it can be so difficult. 

Mommy Tantrums!

(Bear with me - it is a bit long!)
I bet the title may have caught your attention, and yes I'm ashamed to admit it, but I had a bit of a mommy tantrum last week.  Let me back up a bit and give you a run down of the events leading up to my tantrum!
May 23rd - Toby is admitted to the hospital
May 24th - Garrett has a field trip - I miss it because alas Toby's in the hospital
May 25th - Toby goes under anesthesia for an extensive MRI
May 26th - Toby's discharged to his ENT appt. and we make plans for his 10th surgery
May 27th - Paint the kitchen - two coats; take Conor and Garrett to stay with Lynsey (my sister) for weekend!
May 28th - Paint specific living room walls, take Toby and Caris to park
May 29th - clean house, prep food for company, touch up paint!
May 30th - Cook-out with friends; their son falls on our slip-n-slide and breaks finger (is having surgery on his finger this week)
May 31st - Last week of school begins with end of the year picnics, parties, and chaos

By Friday, June 3rd - I'm exhausted and begin to have the "crash" that seems to happen after Toby's been in the hospital.  My sister and her fiance came into town the night before to help me divide and conquer for the last day of school activities.  They went with Conor and Garrett to the school pool party, and I went with Toby to his ice cream party intending on making it for at least some of C & G's event, but not really making it - I ended up there at the end..and we went home.  SO, here's the tantrum you've been waiting to hear about.  I left the pool party with the three kids to go home (Toby's at home napping with nurse) and decide to get ice cream to celebrate the last day of school. 

On my way, I need to stop at the library to return some overdue books and to fess up that Caris had ripped two of them.  (Keep in mind - I am headed home to pack the car to leave with Caris, Lynsey (my sis), and Anthony (my future BIL) to go to Michigan for the weekend for Lynsey's bridal shower on Sunday).  One book wasn't that bad - could have easily been taped and the other was a board book - should have been more durable, but I guess in the hands of a 16-month old - not so much!  Well, they inform me that I have to pay full price for both books, but that I get to keep them.  It was the straw that broke the camel's back and I had a meltdown - complete and utter 2-year old meltdown. I didn't rant or rave, just contested the hefty fine with a supervisor, and broke down into tears, explaining that it's been a rough few weeks, and this was the last thing I expected...(even though I know that they do NOT understand in the least).  Finally, I quietly paid the fine and left (and vowed to NOT return to that library for I'm sure that an alarm will sound next time announcing that the crazy lady has returned!)  Thankfully the three kids were in the car, but immediately saw me crying my eyes out and wanted to know what was wrong!

Later, I questioned why in the world I was having such a hard time these past few weeks and after much contemplation, I learned a few things about myself.  First, when Toby has an unplanned hospital stay - during the actual stay I do great because I'm running on adrenaline...which seemed to have lasted through the weekend and into the next week (hence house painted!), but later, I crash!  In the moment, I don't have the time to "feel, grieve or mourn" the fact that we aren't normal - our family isn't normal...we are raising a medically fragile special needs child.  In the moment, I have to be strong for him (so he doesn't fall apart while they stick him 4 times for an IV) and the family so we don't fall apart.  I'm still trying to keep things normal for the kids at home, while making major decisions that affect Toby's health, while being vigilant that he's getting the best care he deserves.  It's tough. 

The other thing I realized is that this has happened before - after Toby's March hospital stay, and I need to plan on it happening again.  I think it's okay to gear up, be strong, but I need to realize that afterwards when the adrenaline rush is over - the grieving will come.  Every hospital stay is a reality check that the "normal" life we have made exists, but not always...life isn't normal for us.  Sometimes it's very isolating...we have lost friends - new people are more reluctant to be our friends (at least some)...I'm not sure if it's fear of "it" happening to them or that we might be needier than most friends (which is true at times).  I also remembered that it's okay to grieve and not appear all put together which I sometimes do because it's the one thing I can control.  And in the end...even though it all may fall part or others may fail me - God will NOT.  He is trustworthy once again and I can trust HIM through it all.  The song below has been very comforting to me over these last few weeks - I in no way compare the grief I experience to the grief of losing a loved one to death, but I can certainly relate with many of the thoughts/emotions expressed by this song.

"I Will Trust You" by Stephen Curtis Chapman
I don’t even want to breathe now
All I want to do is close my eyes
I don’t want to open them again
Till I’m standing on the other side

I don’t even want to be right now
I don’t want to think another thought
I don’t want to feel this pain I feel
Right now pain is all I’ve got
It feels like its all I’ve got
But I know that its not
Oh I know you’re all I’ve got

And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You

God I’m longing for the day to come
When this cloudy glass I’m looking through
Is shattered in a million pieces
And finally I can just see You
God you know I believe its true
I know I will see you
But until the day I do

And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You

And with every breath I take
And for every day that breaks
I will trust you
I will trust you
and when nothing is making sense
Even then I will say again
God I trust You
I will trust You

I know your heart is good
I know your love is strong
I know your plans for me
Are much better than my own

So I will trust you, I’ll trust you
I trust you God, I will
Even when I can’t see the end

And I will trust you, I will trust you. I will
Even when I don’t understand
Even then I will say again
I will trust you, I will trust you. I will

I know your heart is good
your love is strong
your plans for me
Are better than my own
yeah your heart is good
your love is strong
your plans for me
Are better than my own

And I will trust you
You are my God
I will trust you

Our Crazy Week

So, it's been a really crazy week.  Last Monday, Toby began acting strangely and I was convinced he was in shunt failure; he had all the typical signs - lethargy, crying, complaining of headache, loss of appetite (nausea), and he was more out of it than I'd ever seen, so we called 911 and headed to the hospital.  I wasn't comfortable driving him there myself, he was limp, pale, and let's just say it takes quite a bit to rattle me now, and I was rattled.  It wasn't his shunt, or at least we're not sure - upper respiratory infection and an ear infection seemed to be the diagnosis.  It seems kind of silly to call the squad for an ear infection, but I've never seen him that listless with just "normal" childhood illnesses.  A very dear friend called me while Toby was in the hospital and reminded me that it's possible it was the shunt, but God healed him in the middle of it - that is very possible.  I know that sometimes I forget the power of prayer.

From top left to bottom right (like you're reading a book) is what Toby looked like on Monday at 4:00 p.m., that night in the ER, during music therapy on Thursday, and at the park on Saturday.  Quite a transformation for sure.  He did have some moments of perkiness in the hospital.  We had a great PCA a few days that washed Toby's hair with these caps that have the soap and everything all in one - and they are kept warm too.  After the washing, there's no rinsing so it's a perfect way to wash hair in the hospital (I wish we had some for home - especially on those days when I really need to get out of the house quickly).

So, Toby was discharged on Thursday to find out at an ENT appt. that he has a double ear infection; after one dose of antibiotics he perked up, but I will say that he runs out of energy quickly - I noticed that even today.  Between Lon Nell (Bruce's mom) and my mom they were able to keep life flowing at home with the kids.  On Thursday night my mom asked if I wanted to start painting the kitchen.  We've had the paint for almost two months, but I just haven't had the time to do it (go figure).  Conor and Garrett were previously scheduled to spend the weekend with Aunt Lynsey, so I thought "why not, might as well end a crazy week with a crazy weekend?"  So, we did - we painted the kitchen, and I was so inspired that I went ahead on Saturday and did the red painting we had planned on in the living room (including an 18 foot wall or so).  This is the before pictures:

And after:

We did manage a walk and a trip to the park with Caris and Toby.  I wanted to go to the pool, but Toby didn't really need to be over-taxed  by the heat, so we stayed inside, and managed to host company today on Memorial Day.  Our fun was cut short, though, by a trip to the urgent care - our friends' son was going down the slip-n-slide and broke his finger.  All in all, I guess you have to laugh at the comedy of errors of the week....and through it all I keep hearing this chorus in my head by Stephen Curtis Chapman (his Beauty Will Rise CD is my latest fix for music and much encouragement):

"And I will trust You, I'll trust You; trust You God, I will.  Even when I don't understand, even then I will say again.  You are my God, and I will trust You." 

Hoping this next week is filled with much trust in God, and is a little less uneventful!!

Seizing the Moment

So, Conor had to have oral surgery yesterday.  He had two extra teeth in his mouth that he didn't need.  We found this out after having a consultation/x-ray with the orthodontist a few months ago.  I had to laugh when I called Bruce and said "You won't believe what we just found out!"  He knew exactly - remembering that he also had an extra tooth around that age that needed to surgically removed.  I know oral surgery really isn't a big deal, but it will be his 2nd surgery in 7 (almost 8) years; it's not really anything compared to others or his younger brother Toby (9 surgeries in 4 yeas), but when you expect your healthy kids to be, well...healthy - it's unexpected!!  He had eye surgery when he was 3-years old, his eyes crossed and the glasses weren't really working, so they had to move his inner eye muscles.  It was a really crazy time in our lives - Conor was 3 1/2, Garrett had just turned 2, and Toby was about 8 weeks old and in-patient at Children's (having just gotten his trach, gj-feeding tube, and needing ventilation full time).  I laugh at the irony - we had one child in-patient and one child out-patient at the same time - sort of nuts.  SOOOO...all that to say I didn't take any pictures of  Conor's first surgery.  I think I was just too overwhelmed. I  remember when he came out of surgery - his eyes were bloody.  They weren't just blood-shot - they were bloody and he refused to open his eyes for almost 6 hours.  I finally got him to open his eyes bribing him with a PB&J sandwich.
Surgery this time was much easier, and I resolved to take lots of pictures.  I take pictures of all of Toby's hospital stays, tests, and surgeries, we might as well document this event too.  So, here are some photos of Conor's mouth!! (warning - a little gross).

When I went back to see him afterwards, he was still a bit loopy from being under and had the nurse cracking up with his large vocabulary!!  He was making me laugh too because he wanted to sit up even though he was very unsteady.  Only one dose of pain meds yesterday, and doing so well he went back to school today.  I was surprised by that.  I'm really glad I took the photos - he's growing up way too fast!

Organizing

Can I just tell you that I have fallen in love with the Container Store these last few weeks?  A friend of mine got me started (so Bruce can blame Beth!) telling me about some items they had and a spring sale!!  In the last two weeks, I've been there twice purchasing containers to organize our stuff.  It has been loads of fun, reorganizing bedroom drawers, bathroom drawers, closets, and the pantry.
Here's a sample:

We've also been working on reorganizing the boys' (Conor and Garrett) bedroom, and choosing paint colors and window treatments for our kitchen and great room.  I guess we're finally settling in the new house and making it a home.
I will need to be careful, though...and see if I can:

No Guarantees

Today, I got the phone call that I've been dreading.  I knew it was coming, just had a feeling, especially after the first phone call a few weeks ago from our home health agency (excerpt)

HHA: We have a few questions for you from your insurance company.
Me: Okay
HHA: Does the child go to school?
Me: Do I have to answer that?
HHA: Well....(long pause...I don't think he knew how to answer)
Me: 2 1/2 hours a day 3 days a week
HHA:  Does the private duty nurse attend school with him?
Me: Yes (in my mind, I'm thinking, "uh-oh" here we go, we're going to lose our nursing hours)..and the conversation went on a few more minutes. 

So, today I got the call from the home health agency that our insurance is inquiring into our nursing hours, and wants copies of all the nursing notes.  The doctor at insurance wants to know about Toby's apnea.  How long do his episodes last?  What is his oxygen during the apnea?  Both of those are actually really stupid questions - if the doctor had any clue, he wouldn't ask those questions.  Toby's on a ventilator for his apnea, so when he's sleeping, the apnea doesn't occur - and his oxygen doesn't drop...because the ventilator is breathing for him 12 bpm. 
Anyway, they are starting to question whether they should be covering our hours, especially when Toby goes to school.  Right now our private duty nurse goes to school with Toby because he has skilled nursing needs, i.e. a trach, suctioning, and a ventilator.  If the trach falls out and somone isn't there, he could die. I'm wondering if they are questioning the nurse going to school with him because it's supposed to be "HOMECARE" (I guess that means Toby never leaves home, even for doctor's appointments). We currently have approval through the end of April. 
For the last 4 years, our insurance has been covering most of Toby's nursing hours (not all); the rest are covered by the Ohio Home Care Waiver (Medicaid Waivers).  I should clarify that if insurance stops paying waiver should pick up those hours (hopefully), so I'm not fearful of that, but this is what I am fearful of:
In the past two years, they passed new regulations.  When a child on the waiver goes to school,  the school has to cover the hours (because the school is allowed to bill Medicaid, and it's considered double dipping).  Sorry, if it is confusing (I don't understand it all either).  So our nurse, the one we know and that is trained for Toby might not be able to school with him.
Bottom line - I'm not letting my child with a trach get on a bus by himself - with no nurse.  Sorry, I'm not sending him to school when a nurse isn't close by if something happens.  Most school nurses have no idea how to suction or put a trach back in, and usually rotate between buildings, so this could be very dangerous for Toby.
I know that it sounds like I'm looking at the glass half-empty; I'm assuming that insurance stops paying, that waiver says we can't send our nurse to school with Toby, but all of the above could happen, and I just don't like the fact that we are headed down that road - that insurance is questioning...it's what I've been dreading.

After the phone call with the HHA, I began making dinner and had this conversation with the Lord.

Me: Lord, what are we going to do?  
God: Trust me...
Me: But we might not know until April if we lose these nursing hours and if things will change, how can I stand the next two months with things so unsettled?
God: Trust me
Me:  I don't like it when things are so unsettled, when there are no guarantees.
God:  There aren't any guarantees, Carrie - but I ask you to trust me
Me:  No guarantees?  But, I'm NOT comfortable with no guarantees; I need things perfectly planned out.
God: I didn't call you to a life of comfort and things under your control - I called you to trust and walk by faith, to let me be in control...Will you trust me?
Me: Yes, I'll trust you
God: By the way, there are some guarantees...
Me: There are?
God: Yes, did you forget?  My love is guaranteed; Heaven is guaranteed; I have a perfect plan, I work everything together for good to them who love God; I love Toby more than you love him; I have your best interest in mind; My promises are guaranteed; I am faithful, I will be here for you - even if you feel like the bottom is falling out, or when things change(I know how well you do with change...) Will you trust me?
Me:  Yes, I will...I'm going to try to daily put this at your feet and wait (which I'm not very good at)..trusting...you'll help me, Lord, won't you?
God: Yes, because I guarantee I love you and I guarantee I'm always trustworthy.

So, pray - pray that God will work something out; the doctors will see that we still need these nursing hours, but more than that - that I will continue to trust in the middle of uncertain circumstances.