Friday, September 30, 2011

Hello Hello...

It is 12:37am and I am just starting to type.  I really should be sleeping but my 5 hour energy drinks tend to kick in around this time.  I may possibly start drinking them around this time, that way I'm energized and ready to go at about noon the next day when I actually need to be:)

I first want to send out a HUGE thank you... 
#1: To for hosting the "Mominees who are changing your world" contest this month.
#2: Again, to Melissa Pline, for nominating me for this award. 
and #3: To everyone who took time to vote for me!
I won in the Inspirational category and won $5,000 donated to the charity of my choice! 
I chose DebRA, as I am very grateful for the help they have given us directly after Tripp was born. 
To win this contest and see the people who voted for me and left comments on my nomination was so humbling.  I think this is the biggest honor I've ever received.  
I am truly blessed and I thank you all for making this possible. 
You can view my win HERE.  

Things have been just plain rough around here.  Today made 4 days straight that Tripp hasn't stood up to play.  He just rocks the entire day, occasionally smiling and playing a little in the rocker.  But mostly not even wanting to move much.  He's back to running his low grade fevers and pretty much just feels plain YUCK about 95% of the day.  He is currently on 2 antibiotics: one that I stopped today due to MASSIVE diarrhea, even with probiotics.  

And this is the latest on the G-CSF: The doctor who Dr. D and I are communicating with in Tennessee wanted us to get some baseline labs (blood work) before we could talk about starting this drug.  So we did... and (I think I mentioned this in a previous post) they were a bit out of whack.  His white blood cells were elevated and his platelets were elevated- which for Tripp, is what we are used to.  But, understandably, when a hematologist sees these labs, it's a little bit different.  He said that he couldn't start Tripp on the G-CSF with his blood counts like they were because he would probably have a stroke... (which is actually something that is possible on a daily basis with Tripp, being that his platelets stay so elevated).  But I totally understand his point of view.  So he told us that if we can get rid of the infection Tripp has (hmmm... which one?) that he would start him on the drug.  
This now goes back to everything I said I was not going to do.  
The prying and the poking.  
BUT... I also don't think that I will have a clear conscience if I don't try this drug on him at least once, just to see what it does.  If it can give him a little relief anywhere- his mouth, his sores, his breathing... it will be worth it.  
So, right now we started him on 2 oral antibiotics (we are trying these one more time before we decide on any prying and poking).  One that is for his mouth/ears- in case he has an infection brewing there.  And the other one is the only one left that we think still treats the type of pseudomonas that is covering his body.  But the antibiotic for his mouth/ears is giving him diarrhea.  BAD.  So I stopped it today.  Diarrhea + bandages + an "already raw to begin with" butt = a nightmare.  
After we finish this antibiotic, then we will re-draw his blood work and see if his counts dropped then go from there.  Please pray that they drop so we can have the option of trying the G-CSF.  

His breathing has been just a little bit better.  He's been at the highest dose of oral steroids, on new and stronger nebulized steroids, and on continuous oxygen for about 5 days now.  I've had to start sedating him again for his baths because he gets so upset that he can't breathe.  When Dr. Rodriguez came to the house about a week ago, she looked down his trach with her scope and said that his airway was floppy and that every time that he went to breathe "out," his airway was collapsing.  Lovely, right?  So she ordered him a bigger and longer trach, hoping that we can "bypass" the floppy part of the airway.  Well, the trach came in today- I texted her- and she is coming in the morning to help me put it in (she's afraid it may be hard to get it past the "floppy" part) and then scope him again and make sure it's the right length.  Talk about service, right?  I am 110% positive that God hand-picked Tripp's doctors.  They are absolutely amazing and I could never say enough wonderful things about them.  Never once have I had to ask Dr. Rodriguez or Dr. Defusco to come to the house- they offer every time.  They are angels. 

So since Dr. R is coming in the morning, I did something horrible and skipped bath tonight! 
I know... this does NOT happen often, but mom and I decided that he was just feeling horrible, having way too much diarrhea, and if we were doing a trach change in the morning already, then we might as well just wait and do everything in the AM.  But as I'm laying next to my little angel right now, I'm thinking it wasn't the smartest idea because he's itching so bad and so restless in his sleep.  This proves to me that every other day is the only option for baths.  My poor bub:(

Guess what?? 
It's that time again... COLD AND FLU SEASON! 
And I know you all know that kids haven't been allowed in this house in over a year now, but I'm going to ask again that even if you are AROUND a child, adult, animal, or ANYTHING that even looks like it might have a cold or is sick, that you pretty please stay away:)  
I love you... but I love Tripp just a tad bit more. 
And right now, a simple cold could kill him.  Literally. 
And he's #1 priority, of course.  

Because "Who's the cutest baby boy in the world??"

Duh :)



  1. We'll be praying hard for you and Tripp, hoping that he can find relief and stabilize enough to try this new treatment. I know it is hard as a parent to purposely inflict pain on your child to prevent greater pain, but rest assured that we ALL know how much Tripp THANKS you for your tireless efforts. Courtney, you will always be a role model to me. I'd be greatful if I could only be 1/1000th the parent you are. Tripp truly is an Angel sent here to help us find our way back to the Lord, no matter how far we've strayed. I know this becuase he has done this for me and I am forever greatful to that strong little man. God bless you all!

  2. I work with Linda( Little lady Leah's nana) and often read your blog. You and Tripp are truly inspirational and are in our prayers. Congrats on winning the award and even more so on thinking of DeBra.

  3. I just have to say you are one of the most courageous, determined mother I have ever read about. Reading your words as they are typed and going though, brings tears to my eyes! You are a true inspiration and it makes me rethink my mothering capabilities. You are amazing! There's nothing else to say about it!

  4. You (and you mom) continue to impress me. Praying for sweet Tripp every day!

  5. Hi Courtney,
    Your love for Tripp shines through every single word your write. I am so thankful that God chose you to be Tripp's mommy. The dedication you have towards your son inspires me to want to be a better mother.

    I am praying for you and Tripp. For the blood work to stabilize so Tripp can try this new medicine. I am praying for relief for Tripp and that he will be playing soon.

    Blessings on you Courtney, your love is amazing and is an amazing example of the Father's love towards us.


  6. You ROCK, Courtney! Congratulations on your award! That is awesomely inspiring. Good luck with the new trach. Just keep loving that boy every which way you know how and feel in your heart. Don't paint yourself into a corner with the poking and prying thing; you are there to protect him, and you are pretty tight with God, so just keep your ear out; you'll always know what's right, even if it may not make sense in the moment... hope that makes sense. Much love, respect, and support, the Ringgolds

  7. Praying hard for counts to drop!! Courtney... CONGRATS on winning the big prize for your charity! I am praying that you have peaceful, comfortable and loving moments snuggling your little man! He is in good hands, yours!! Hugs to you, Tripp, your mom and dad~

  8. They couldn't have chosen a more deserving Mommy to win! Every post brings me to tears and this one was no exception, but how can you not smile at cutie pie Tripp raising his arm - he is the cutest little boy!

    Continuing to pray for you and Tripp and will say a few extra prayers that Tripp is able to try the G-CSF.

  9. Congrats on your award and donation to Debra! So amazing!

    You and Tripp inspire me daily and I am sending out many prayers and lots of love! Praying you guys get to try this new treatment out for him!

  10. saying extra prayers for you today, little tripp! may you find comfort and relief soon. what an inspiration you are. i hope one day you will be able to comprehend how many people and lives you have touched. it is truly remarkable. and indeed you are the cutest baby boy in the world (my two little boys are 2nd and 3rd!)! xo

  11. Congrats on the award and donation, that is awesome and you are so deserving. My heart truly goes out to you and Tripp. Praying for Tripp's healing daily. God bless you all.

  12. I am praying many times a day for you and also during the night hours when I can't sleep or my little man has me up. Would love to see you and Tripp get a turn in the corner in the coming week so you can try this treatment! God bless you both (and your Mama too)

  13. Love the pic at the end! He sure is the cutest kid in town, and quite possibly, the whole wide world! :) There is a small part of me that resists commenting because I just do not know what to say to you. You're just such an amazing woman. I know you do what you have to do, but you do it with grace, and full of love. I suppose any parent would do it, but to know you share your experiences, you're honest, you're stressed, yet, you do it gracefully... just amazing! Give lots of hugs to sweet Tripp for all of us in Blogland!

  14. Tripp is absolutely precious!! Praying for you sweet Courtney!

  15. Keep up your high spirits, dear Courtney! I am praying for better days for all of you as always, but since we should take one step at a time, right now I pray tomorrow is a bright and smooth day for all of you!

    Warm hugs!!!

    PS: Congrats on your award, but honestly it was not surprise ;)

  16. He is the cutest and the most blessed! So sweet!!! You continue to amaze and inspire me. So happy that you won the contest. Praying for you and Tripp! God Bless!

  17. You humble me, every time i read your posts. What an incredible spirit you have! When I think of you, i always think of Job in the bible. Though he had done nothing wrong, all of these struggles happened in his life back to back, and yet he never gave up or even faltered with his faith. Eventually, because of his incredible perseverance, he was blessed beyond measure! Keep your head up.. you are truly an inspiration to us all, and you have no idea that when you press on and keep walking forward, that it gives us the power to do the same in our lives!!!

  18. Your love and devotion is awe inspiring. This little boy is so lucky to have you and I know you feel the same way about him. I follow you through Erin Tabarrok and your experience and the way you handle the situation has truly affected me. God Bless You. I pray for you and your family.

  19. i don't even know this little fella, but oh how I follow your story about him and send good thoughts his way - he's stolen my heart just a little bit. I wondered why you had to bathe him so often if it was so painful (i thought to just skip the ordeal) but you can't even do that without consequences. Drat.

  20. This little Angel is a precious child of God, and God has his hands covering Tripp and his family.Please know that I will stand in faith with all of you and not a second in the days that I will not continue to ask God to cover each of you abundantly with His gracious love peace and strength. Prayers are going UP for each of you,God be with each one of you.

  21. You are such a strong, amazing momma. I am praying very hard for Tripp.

  22. Congratulations Courtney!! You are so deserving of the award! I only hope to be half the mommy you are.....sending lots of love, hugs and prayers for you and sweet Trip! God Bless- Mary

  23. He certainly is the cutest baby boy!
    I love, love, love your medical team, from docs to pharmacists! They are such a blessing.
    Praying with all my heart that Tripp gets a chance at the G-CSF! Go Team Tripp!

  24. Courtney....I so love you, you heart, your beautiful spirit....and I so love Tripp! It breaks my heart to think of him not wanting to play his drums and dance to his music. You are daily in my thoughts and prayers, and will continue to be there.....may Jesus be so near to Tripp, and give him great comfort and peace....and give you the same. Much love ~ alice

  25. Courtney,

    I am SO thrilled that you won the babble award! You truly are the most inspirational mommy I know! I can't think of a more deserving, wonderful person. :)

    You, your mom, and Tripp are in my thoughts and prayers, always. You are an amazing mother Courtney. Even though I've never met you in person, I am always thinking of you and praying for you. You do everything for your "Bubba" and I know he knows it and he feels it. The best thing you're giving him right now is your LOVE. Medicines will come and go, but your love for him will never change. :)

    I'll be thinking of you this week. Keep us posted when you can! ((((hugs)))))

  26. Your posts bring me to tears every time, and I can't help but share many of them on facebook...I hope you don't mind.  I love that last photo of Tripp.  Again, you are an amazing momma, and he is an amazing boy!  You guys are always in my prayers.