Sunday, July 31, 2011

My miracle.

I'm somewhat speechless over these past 2 weeks.  Never in my wildest dreams would I have thought that so many people could love my little boy.  The support that we have received has not been limited to family and friends- it's now turned into perfect strangers and people all over the country (and some even outside of the country).  Sometimes it doesn't even seem real.  Watching the video from last Monday night at Tripp's prayer vigil- was completely humbling to see so many people gathered together praying for my son.  It brought tears to my eyes to see pictures of people lighting candles and bowing their heads for my son.  And it gave me chills to see the video of all the amazing things that took place that night- all for my son!
So once again, I say THANK YOU.  
For your prayers, your support, and your encouragement.
Thank you to everyone who have sent cards and are doing (or have done) fundraisers for us!
I am so proud that Tripp's name has raised awareness about EB.  That is SO important to me- a voice for these children living with this disease who either didn't live long enough to have a voice, or whose voice is yet to be heard.  I'm so proud of my little man- fighting hard every day, just to touch one more life. 

Here is the beautiful video of the Monday night prayer vigil that two great photographers, Brenda Sison and Michael Lovett, put together for us. 

My Tripp is the definition of a true fighter.  I am so happy to say that he has started feeling better in the past two days.  Needless to say, the last 2 weeks have been some of the toughest of my life (emotionally).   I have never seen him anywhere close to being that sick.  I thought he had completely given up and was ready to stop the 2 year fight that he's had.  And I couldn't be more proud to say that I don't think that's the case yet.  Between Dr. D, Dr. Benson (our local dermotologist and family friend), Trea and Amber (Tripp's super fabulous pharmacists), and myself- we discovered that this 3 week period of high fevers, extreme pain, and horrible excess of blistering could have been a product of the herpes virus.  We started figuring it out when I got a fever blister about a week ago (and I've never had a fever blister in my life).  The type of herpes virus (which is common in children and obviously adults that get fever blisters) can be almost as painful as shingles.  Which could explain the amount of pain that he was in.  And with the virus, you can also run very high fevers (which would explain his 105.2 fevers).  This type of virus (bare with me, I'm not too familiar with this) can also cause lesions in your mouth/throat.  Which could also explain his pain and why his mouth/lips were so swollen.  Dr. Defusco had mentioned this once before when she noticed little clusters of blisters on the tops of his hands that looked different.  At that time, which was about 2 months ago, we started him on Acyclovir (an antiviral), just to be safe and then never really thought about it again.... until I got my fever blister.  Then she started him back on the Acyclovir (this was last Friday).  And about 3 days ago, the horrible horrible black sores/scabs on his face started to dry up and to heal and gradually, the tremendous amount of pain started to subside.  

This was also around the time of the two prayer rallies...
 Could it be the thousands of people who have united in prayer?  I'm definitely a believer of "prayer in numbers"- as you already know.  And I truly believe in Tripp's miracle of healing.  So just as I believe that this antiviral medicine could be what's causing him to feel better, I just as much believe that it could be from the power of prayer coming from all of you in the past week.  

I hope you all believe it, too.  I hope you see and feel how God is working through all of you.  I have so many people that are concerned about us that I can't even keep up with my messages and e-mails.  It's amazing.  I am completely awestruck.  There are people who write me telling me that reading our story has changed their lives.  Do you know how touching that is?  There aren't any words that I could use to describe what that feels like.  I'm going to be completely honest.  The reason why none of this seems real is because I don't feel like I am doing anything different that everything that I am supposed to be doing as a mother.  I have wanted to be a mom since I was about 12 years old.  I have loved children my entire life and dreamed about having children of my own.  Am I a good mom? Of course... but for me, there was no other option than to step up to the plate and fight with everything in me to give my child everything he needs- healthy, sick, disabled, or whatever comes our way. 
Why?  Check out this video from yesterday... 
There is nothing more rewarding than this smile...

This video was taken yesterday right after Sister Dulce (a healing nun from Baton Rouge) came to our house, blessed him, and said she will take his pain away.  We've seen Sister Dulce before, about a year ago, but since we couldn't make the trip to see her again- she came to us.  I am so grateful because she is a very busy woman.  And a mighty woman of God. 

Even though little man is feeling better, he still hasn't stood up (or even SAT up), but the past 2 days, he's been almost back to his fussy, rotten little self.  Now, I hate to even post this because I always, always jinx myself and right after I say he's feeling better, he spirals back downhill... but I couldn't hold out on my faithful prayer warriors any longer :)
He's still on a tremendous amount of pain medicine- and I'm pretty sure that even before all of this, he needed better pain management.  So I'm thankful that we switched pain medicines.  He's on a really high amount, but I can always tamper down little by little if I need to.

This was his face 2 weeks ago...

And this was his face last night...

Does it have anything to do with the community/world coming together in prayer?
I think so :)
Please keep the prayers coming- I know they are working.  
Not only in Tripp's healing, but in bringing more and more people back to God.
And at this time in the world, there is NOTHING better than that!!
This kid is touching lives and taking names... 
He's my miracle... whether he's around 10 more years or 10 more days.
I love him so much.

WWL Channel 4 and WDSU Channel 6 were both at the prayer vigil on Monday.  
In case you missed it, here are the newscasts...


Wednesday, July 20, 2011

I think he's known it all along...

I know I've been needing to update, but it's just been about finding the time to sit and gather my thoughts... which have been ALL over the place lately.  So where shall I start?  I think my last post (other than the poem) left off saying that little Tripp man was doing okay, and being a little fussy ham.  I know you all know that very gradually over these past 2 years, Tripp has only gotten worse.  And in the past few months, his play-time has gotten to be less and less.  But in the past week, he has pretty much spiraled down-hill and we just can't figure it out.  

At the beginning of last week, he started running fevers.  He always runs fevers, (he's constantly battling some type of infection) but these fevers were between 103.0-105.2, which he has NEVER run.  We (Dr. D and I) juggled around the possibility of the hospital, but had not made a decision yet.  We thought about the home health nurse trying to start the IV antibiotics at home, but then realized that this wouldn't be the best idea- considering that he probably would not leave it in and he would need the antibitotics around the clock.  SO, she waited until Tuesday night when his temperature dropped between 93.0-95.0 (which was really odd, but can be a possible sign of a blood infection) before she decideed to have him admitted.  

Now I will remind you that Tripp has not left this house since October of last year- at all.  That was the last time he had been admitted to the hospital.  He: 
1. Cannot go more than about 5 minutes without his humdified air on (and this machine cannot be plugged into the adapter in my car, it's too big). 
2.  Would never ever let us put him in his carseat for a 45 min drive- no way, no how.... air or no air.

SO- it was either:
1. Call an ambulance (which makes me nervous just typing it), or
2. Borrow a big RV from my dad's work where we could take Tripp's rocking chair with us.

The ride there definitely went better than I would have expected.  Without that rocking chair, though, we would have been up a creek without a paddle:)  The ride was pretty bumpy... and on the way there Tripp was so nervous that he kept switching between my mom and me.  And being that we both get carsick even in the passenger seat of a car, we were both pretty nauseous by the time we got there.  

We went straight in to the ER, no wait... they checked us in and took us straight into a room.  Meanwhile (from the RV to the room- which was just about a total of 5 minutes)- Tripp was FREAKING out.  He was so scared and so confused.  And as soon as we got him into the room, the staff brought in a rocking chair, and he settled down quickly.  

I just cannot say enough about the staff at Ochsner on Jefferson.  Never once have we gone in and had any type of bad experience.  Dr. D always calls ahead and lets the ER doctor know we are coming, so the doctors and nurses are always more than accomodating to us.  They started the IV in his head.  We had to hold his little hands down while he was in the rocking chair and while he cried (but overall he was such an angel).  After we got the IV in and secured (with his special tape), he was SO good.  He would try to feel it and I would say, "That's just some tape, buddy." and he would put his hand down and leave it alone.  

He got his first doses of 2 types of IV antibiotics (and bloodwork drawn) and then they admitted us onto the Pediatric unit (which I can also never say ENOUGH good things about).  They all know us by name and treat us like royalty (really).  And the pediatric doctor on call that night was Dr. Fogarasi- whom we ADORE.  We didn't get in the room until about 3-4 the next morning and then after getting situated, cleaning the room, fixing his bed, cleaning him up, and then showering ourselves- we didn't get in bed until after 5 that morning.  And all of that time, Tripp left his IV in his poor little head.  And then, I'm assuming as soon as we finally fell asleep- he ripped it out.  Because when I woke up at 7 that morning, it was lying right next to his head:)  

So then there were decisions to be made.  Were we going to start a new IV to give him the rest of his antibiotics when he would probably just pull it out again?  Were we going to keep him in the hospital where is SO anxious and out of his comfort zone to treat him for something that would just come right back?  The pediatrician on call decided that she did not want us in the hospital.  She wanted us to be home in our environment, where Tripp would be comfortable.  The plan was to take him home on antibiotic injections (which is pretty much the only option left now that he is resistant to almost every oral antibiotic).

Dr. D decided that she wanted me to talk with the PICU doctor, Dr. Finger, while we were in the hospital.  She wanted him to give his opinon on where we should go from here.  So Dr. Finger came and spoke with my mom, dad, and me.  It was rough, I have to admit.  He (in a nutshell) said that he thinks that we are at the point where we are doing things TO him instead of FOR him.  He said that if we ever admitted Tripp into the PICU and wanted us to stick an IV in his head, or give him an antibiotic shots- that he would not do it.  He said that in his opinion, to inflict pain on him (such as shots and needles) just  trying to rid an infection that is going to come right back- is almost cruel.  He made it a point to ask me if I thought that he was getting worse- and of course I said yes.  Especially his skin.  
He didn't want us to make any decision right then and there, but just to think about what he said.  And honestly, everything he talked about is exactly what I've been feeling over the past few months.  When it's his time (whenever that may be), I've always said that I would keep him at home and keep him comfortable.  And doing anything that causes him MORE pain when we are trying to treat an infection that is going to come right back the second we are finished treating it... is not my idea of comfortable.  

So where are we now?  We are home, of course.  
And we are working on his comfort.  We have done a number of things in the past week.  And by we, I mean Dr. Defusco, Trea Landry (CVS), Don Fellows (Central Drugs), and I.  In the past week, we have  started 2 new pain medications and 2 new anxiety medications.  Baths have been, of course, worse than EVER.  There are absolutely no words to even begin to express bathtime.  I'll just leave it at that.  And now diaper changes are just as bad as bathtime, they just don't last as long.  Tripp has been getting an ungodly amount of pain medicine in the past few days.  And we still have not gotten him to the point where he is comfortable when you move him (or of course bathe him or change him).  Now don't take that the wrong way- for the past week, he has spent every day pretty much knocked out in the rocking chair, not even being able to say "more" or "yes."  But when we go to move him, sit him up, or switch positions- he starts trembling in pain.

Ready for just a little "good" news?  My sister is in town!!  She flew in last Sunday and is staying until next Tuesday.  I am so happy to have her here.  I really needed her.  So did my mom:) 
I'm trying not to even think about her having to fly back to North Dakota... that is not going to be a good day.  

I really do not know what I would do without Tripp's doctor and pharmacists.  Honestly, they are more like friends/family to us.  Even if I tried, I would never be able to thank them enough for what they are doing for Tripp.  They are working together 24/7, racking their brains, helping each other, seeking help from other healthcare professionals, and trying to figure out how to make my little man as comfortable as possible.  Dr. Defusco is coming to the house, calling me every day, and working so hard for Tripp WHILE she is juggling her other patients (it just seems to me like she wouldn't even have time for anyone else with the time she is putting in for Tripp).  I have the utmost respect for her for being the best doctor we could have ever hoped for.  And Trea Landry (Tripp's pharmacist at CVS) has been like family to us.  He and his wonderful wife (who is also a pharmacist) check on Tripp every day.  He drops off prescriptions to our house, and hardly ever comes without bringing us food or asking what else we need.  He has spent the last week also racking his brain trying to figure out how to make Tripp more comfortable.  He and Dr. Defusco both have been by the phone- 24/7 waiting to see if I need anything. 
I love them.  And feel so so blessed to have them in our lives. 

This was his bottom in the hospital a week ago- it is worse now, with more redness and drainage from his wounds.

I realize that this may be hard to look at, but I just want everyone to know that this is not even 1/4 of his pain.  His legs are covered in these same wounds, as well as his neck, face, hands, feet, etc.  The picture that I last posted of his little leg in my earlier post was the "good" side of his leg:(
This little saint is having to endure an unbelivable amount of pain- and since his pain and wounds have only gotten worse and not better in the past days/months/year... I think it is only fair to my little angel to finally do the best we can to make him as comfortable and pain-free as possible.  

Is this an easy decision?
Am I clinging to my faith and trust in God now, more than ever? 

 I have known since Tripp was about 2-3 months old that I should expect to outlive him.  
And for 2 years, I have tried every day to prepare myself for the day that would happen, but pray and hope and trust in God that it never would.  I could not even begin to count or explain the amount of emotions that have gone through my body through these past years... wanting him to live and fight and then asking God to take his pain away in the next breath so that he wouldn't have to suffer anymore.  
And as many times as these emotions have felt- there is no way I could begin to explain what I am feeling at this point.  

Is this just another hill we have to climb and he's going to shake this and start to fuss us again?  
Or is this starting the events that I have dreaded and cried over for the past 2 years? 
I don't know, you don't know, the doctors don't know... only God knows.  
And I have accepted that with everything left in me.  
I have totally turned it over to Him.  
I realize that I was chosen to be Tripp's mother for his time here on Earth. 
And like both of the priests that I have talked to in the past two days have said- Tripp was chosen to carry this cross.  He is a disciple of Jesus and is truly a saint.  One priest stated that we should be praying TO Tripp instead of FOR him, because he is truly blessed by God and has a special place right next to Him in heaven.  I truly believe this in my heart.  

But of course, nothing in the world can ease the pain of watching your child suffer and knowing that "keeping him comfortable" is the first step in letting him go. 
My prayers now are for God to do His WILL- not MINE.  
My prayers are to the Blessed Mother Mary to give us comfort. 

GOD BLESS each and every one of you who have reached out to our family 
(thoughts, prayers, emails, food, phone calls, ETC). 
I am overwhelmed by the amount of lives that my little man has touched. 
I don't think Tripp is suprised, though... 
I think he's known it all along. 


Friday, July 15, 2011

I'll need a Pinky-swear

As he lies in my lap
And together we sway
I rock him to sleep 
And meanwhile I pray:

"Dear God, I know you can see us
And you're watching from above
Filled with sadness for him, as we are,
And equally in love.

I've never once asked You "why?"
Nor questioned if You were near. 
But I do have one request tonight, 
I pray that you will hear. 

When it's time for You to call him home, 
And my hope turns into despair,
I will need more than a promise from You,
I'll need a pinky-swear...

That you will hold him close to Your chest,
And say "I love you" all day long.
That you will rock him 'til your knees get sore,
And sing his favorite songs.

Tell me that You'll keep him safe,
So I will not be distressed.
Tell me that he'll will get his wings
And tell me he'll be blessed.

Let me know he made it safely,
Without a single blister or bleed,
Let me know that you will do MY job,
To fulfill his every need.

I have to know that you will love him,
Just as much, or more, than I do.
And when he finally speaks a word,
That You'll record it so I can hear, too.

My buddy is going to need Your help,
With so much yet to learn.
Like using a spoon, writing his name,
And having to wait his turn. 

God, please be patient when he tries,
For he's such a sweet and loving boy.
Please give him every thing he wants,
But make sure he shares his toys.

These are things I'll miss out on,
Like no Mommy should have to do. 
So don't let one milestone go unnoticed,
Please, I'm begging You.

He likes Elmo's ducks, The Three little Pigs,
Shoo Fly and Counting to Four.
Big Green Tractor, Rise and Shine. 
And when they stop, he'll tell you "more."

He holds certain toys in certain hands, 
And says yes with a big smile.
Please spend some extra special time,
And talk with him awhile.  

It breaks my heart to have to think
That he won't graduate from school. 
Or go to prom, or have kids of his own,
Or even break a single rule.

Tell him for me- please don't forget,
That I wanted him to stay. 
That I tried and tried to ease his pain,
But it was only YOU who knew the way.

I know you have a choir of angels,
Who play music while they fly.
And if they need a drummer boy-
Well, my Tripp, he's their guy!

You've probably seen it for yourself,
That he's one brave kid, indeed.
But he'll be scared if You have to leave,
So stay with him, I plead. 

If he has to go to Heaven first,
I'll make one promise back to You- 
I'll miss him every second he's gone, 
And spend the rest of my life trying to get there, too.

I hope that's not too much to ask,
And I trust You'll do your best. 
To fill my spot, just temporary, 
And answer my requests.

Thank in advance, Dear God.
Because I know You're a busy man. 
I trust in You and in Your Will
And know You have a plan."

Words just simply can't express
To my only son who just turned two-
How very much my heart will ache
If that rocking chair is without you.

So dear sweet angel baby of mine, 
If we ever have to say goodbye...
I'll rock you in my heart forever, 
Until we meet again in the sky. 

Written by Mommy


Tuesday, July 5, 2011

Elmo had four ducks... quack, quack, quack, quack!

This song has played in Tripp's DVD player so many times in the past week that it's the only possible thing that I can think of for a title.  It's all I hear ringing in my brain all day long.  I even dream about Elmo's darn ducks... 
Little man has been SO high maintenance lately, bless his little angel heart (and to some of you up North, I know "Bless your heart" means something ugly... but to me it literally means "Bless his heart"- I'm not cursing my child :) haha.  He knows exactly what song/CD he wants to listen to- it's just the "us figuring out which one he wants" part that is tricky.  About 95% of the time, it's Elmo's Ducks... but every now and then he likes to switch it up and we have to guess which one he wants until he finally smiles (which means "yes").  And he may only want to listen to one song on that CD once or maybe 25 times in a row, then on to the next.  
And then the next game is figuring out what he wants in his hands to hold (while he's rocking).  He only hold certain toys together at the same time, and only hold certain ones in each hand.  For example, when he holds Big Bird and Elmo together, Big Bird has to be in the right and and Elmo in the left.  
  And usually we can guess easier by what he's holding in his hands.  If he has a duck- it's "Elmo's ducks", Big Bird- it's "Big Bird's song," Ernie and Elmo- it's "One Fine Face" (a song that Elmo and Ernie sing together.  Get my drift?  Ok, now I know that you guys officially think I'm losing it.  Don't worry... I think I am, too.  Actually, I'm positive that I am, little by little. 

Oh my little sweet man is breaking my heart these days.  The days are passing by so fast... and not only is his disease progressing and his sores and things getting worse, but I'm having a lot of guilt for not have taken the proper steps "education-wise."  I feel like I should have been having speech therapy, physical therapy, and occupational therapy in here over a year ago.  We had OT while we were living in Norco, but after the move, I never contacted anyone to get them here.  And yes, I know I've had A LOT going on and on my plate, but that's no excuse.  Little man's needs should have come first.  I'm in the process of getting them in now.  Better late than never, I guess.  
Hopefully they will be able to help us a lot with the "communication" part.  It's so frustrating for Tripp and sad for us when he's trying to tell us something that he wants and we can't understand.  He's older now and VERY opinionated (I know, surprise surprise), so we need to have a better means of communication going on other than just "guessing" what he wants.  I'm hoping we can try some type of comunication board.  

Medically, I would say right now (today) he is stable.  Our sweet,  super awesome home health nurse, Kati came last week to draw Tripp's blood again.  Everything went really well- I was VERY impressed at how good she was (but wasn't really nervous at all because she works in the PICU at Children's hospital).  Anyway... we got the results back :

BUN- 33    Normal 6-22
Albumin- 5.1     Normal- 6.3-8.2
WBC- 22.7    Normal- 6-17
HGB- 10.9    Normal- 11.3-14.1

And a few other labs were just a little off- but overall I was VERY impressed considering everything he has going on how well his labs actually were.  
E X C E P T:
His Platelet Count was 1.322 million.
The normal range is 140-400 thousand. 
The last time we drew his labs in October, his platelets were at 900 thousand and Dr. Defusco was very concerned- so I'm not quite sure what she's going to say or what we are going to do about it.  I haven't heard from her since we've gotten the results back because she's on a VERY deserving vacation! :)

Your platelets are what help your blood to clot when you cut yourself or damage a blood vessel in any way. 
 I am no doctor, nor am I a platelet count expert- but I am a nurse, so I do know that a very high platelet count means thicker blood, which means less circulation, which means a high risk for a thrombosis (a blood clot), which could cause a stroke or heart attack.  In Tripp's case, I think it could have a lot to do with why he has so much trouble breathing and why he is so short-winded when he stands up to play.  A higher number of platelets are common in EB and other things such as anemia (which he has as well), leukemia, cancers.  I guess it's the body's way of adjusting.  And in EB, it's almost a good thing, because when Tripp has a bleed, it almost stops immediately.  Otherwise, he would be losing a lot more blood than he is now.  BUT, being THAT high is not good- and I'm thinking could get borderline pretty serious.  But I'll have to wait and talk to Dr. D and let you guys know what she says.  

Baths have been bad again.  Not so much the "in-between" part, but the beginning and the end now (for some reason) are just horrible.  Lately when we sit him up to do his arms, he just cries and cries and makes himself so upset.  I encourage anyone who wants to know the true meaning of pain and suffering to come join us for Tripp's bath.  I would rather someone cut of my right arm every other day than have to put him through that.  I'm serious.  Mom and I have to psyche ourselves up mentally before we do it.  And I know it's the scariest, most awful thing for Tripp.  I hate that for him.  I get a sick feeling in my stomach on every bath day.  And I know he can sense when it's bath time, too. 

But things are just okay around here as far as Tripp is concerned.  The days just consist of making him as confortable as possible and doing anything we can to make him smile.  
Thank you all again for the continued love, prayers and support.     

Just one side of my poor baby's leg.  
See why he gets whatever he wants?? :(