Saturday, September 4, 2010

Another Eye Surgery

So since the last time I wrote, Tripp's eye has gotten a lot worse.  It's swollen, red, and I think the contact is bent.  Not to mention there is that symblepharon (skin tag that's fusing to his eyeball) in the corner that's just growing and growing.  And I'm pretty sure that's what's causing the contact to move.  Not sure though what is causing the lid to blister and swell again, though.  Unless he's rubbing when I'm not looking.  Which isn't often.  SO-  we went to the eye doctor Thursday and he consulted with the corneal specialists (who doesn't treat kids, by the way) and they decided that our next option was something called a "symblepharon ring."  Yeah- I don't know.  I need to research and put a call into my EB nurse.  It's supposedly a piece of PLASTIC (layered in membranes) that they will put in his eye almost like a contact- but it covers more of the eye.  They will need to cut a hole in the middle of it so he can actually SEE.  It's supposed to also keep the symblepharon from growing (I think).  


 I just don't know what to do anymore.  I know I should be grateful for having something new to try and having another option... but placing another piece of plastic that is thicker than the contact in his eye doesn't sound very EB friendly to me.  Anyway- surgery is scheduled for this Wednesday at 2:00pm.  I will be doing all the research and calling around that I can do on Monday and Tuesday to find our more about this surgery.  But right now- the doctor and the corneal specialists both seem like they're ready to wash their hands of us. 

And that's something else I could go on and on about- I feel like the doctors should be honored to be able to be Tripp's doctor.  I mean, as a doctor wouldn't you like to be able to treat a child with a disease that only comes around every 1 in 2 million kids??  They could be learning so much and researching so much- instead they are intimidated.  Sorry, I'm venting.  I just got angry on Thursday because I could clearly see that his contact was bent (and anyone who wears contacts should know that a bent contact is irritating, right??)  And you would think an eye doctor would know the same.  Well, they didn't want to have to hold him down to get it out- and don't get me wrong- neither did I, but what were our other options?  Leave it in?? I GUESS SO.  Because it's still in- and still bent.  And I can't get it out because every time I go near his eye- he FREAKS.  

So please say some prayers for us- we need them.  I'm close to having a nervous breakdown.  It's the worst feeling when you don't have a clue how to help your child and he's constantly in pain.  This is such a horrible disease in every single way.  All I can think about is that Tripp's reward in heaven will be so great, that maybe it will be worth all this suffering.  But sometimes that's just not enough to ease your mind, either.  

So- I'll end with some pictures...  I give you- MY AMAZING, BEAUTIFUL, ANGEL BABY BOY...

Some outside wagon time.  
It was actually a tad bit tolerable one day last week.
This is probably why his eye is now bad. 
Lose-Lose--- always:) 

My cousin Jamie has been coming over to help us with bath. 
She decided that Elmo must be present at bath time and took it upon herself to buy him. 
We.      LOVE.     Jamie :)



  1. What a happy baby! I can see from all the pictures that he has such a bright light in his eyes!! Keep fighting for tripp, you are doing an awesome job mama!!

  2. Courtney, I sigh with you. I can feel your pain. I know that feeling of not knowing what to do to ease your baby's discomfort. I know the feeling of exhaustion, terror, anxiety, even dizziness that comes with having to wake up every morning and handle it all... again. I am so sorry the docs haven't seen the opportunity to learn from Tripp. It is not always easy to transform how you see a situation. However, YOU do a GREAT job at this by always reminding us that through it all, there is still happiness in Tripp's life, and that is what you chose to share with the world.

    P.S. Come Thursday, I may need pointers on how to EB-ify a trach... (big sigh there as well).

    Much love, admiration, and respect to you and Randy,

  3. God love that sweet boy! Praying that all goes well with this surgery and that those doctors get their act together! =)

    Bent contacts DO hurt!! =(

  4. Your little boy is always in my prayers.

  5. Ugh, I am so sorry to hear about this latest setback. That really stinks that the drs. aren't doing what they are supposed to. That really upsets me. Tripp deserves the best. Wishing the pain would stop for your sweet sweet man. Praying every single night for your sweet Tripp.

  6. Have you ever tried to contact U.C. Davis out here in Sacramento, Ca.? Also we have the Shriners hospitals. Possibility maybe? U.C. Davis is 916-734-7131 (This is the school of Medicine) Shriners is worth a shot, possibly for referrals: 916-453-2000 Good luck! Take care, Elizabeth R.

  7. Hi Courtney, it is very sad news about his eye contact.. I would try to give Tripp a small dose of sleeping pill or something like that so when he sleeps there would be a chance to gently open his eye and remove the bent contact.. Dunno if it is practically possible..hope so.. I think that doctors just don't want to take greater responsibility dealing with a rare EB baby.. they had no personal and practical experience treating, holding, manipulating a baby with fragile skin.. they are freaked like.. Natalya Rynne

  8. Aww poor buddy... hope this time surgery helps

  9. Courtney, I have no words. Just praying for you guys and I'm here if you need me. (Returns big, sad sigh.)

  10. Courtney, I can't believe you are dealing with eye doctors who make you feel like they want to wash their hands of you! That is very discouraging.

    Is there any way you can fire them and transfer Tripp's eye care to another physician? Most doctors go into medicine because they want to HELP people. Tripp's ophthalmologists sound like they are in the small percentage of doctors who get annoyed when things aren't an easy fix and, therefore, want to bail out.

    Remember -- they are working for YOU. I'm afraid I'd "go off" on them if they acted like they wanted to wash their hands of Tripp and his problems. A good doctor doesn't bail on a patient!! Grrrr

    Vicki in Tennessee

  11. I cried reading your post. No-one should ever have to endure such pain; especially not a baby. If only tears could make it all better - I feel I want to cry bucket-loads for your beautiful angel. I cannot begin to fathom the constant pain he must be in. He's braver and stronger and more amazing than any adult I know - and he's just a wee baby. Praying for a cure for EB, and sending much love and hugs to you guys.

  12. I'm just praying. With all my heart.

  13. Many prayers and blessings for Tripp and your family. May God continue to give you the strength to do what is best for Tripp and to fight for him.

    Blessings from WA!

  14. I am praying for you and your precious baby. He is in wonderful hands with you Courtney. I pray for you daily! I love Jamie too! How fun is that Elmo head?

  15. Courtney:

    We are praying for Tripp and hoping that little sweet angel gets relief for his eye. I hope you can look forward to some outdoor time with Tripp once the weather cools a bit and Tripp's eye is much better.

    You are brave and strong to push back on the doctors as you do. You have so much wisdom and insight. Keep asking the questions and keep demanding all that you do.

    If anyone reads comments and knows anybody in the eye medicine field, please forward on Courtney's blog and current situation. Information is power and Tripp deserves the very best care.

    The website for Wills Eye hospital in Philadelphia. It's a very reputable place and they do seem to do pediatrics (I realize this case is very, very unique). However, it is an Eye Hospital and they do receive many accolades in hospital rankings, etc.

    Pediatric and Ocular Genetics Service
    Suite 1210
    Phone: (215) 928-3240
    Fax: (215) 928-3983
    Chief: Alex V. Levin, MD, MHSc, FAAP, FAAO, FRCSC
    Co-Directors: Leonard B. Nelson, M.D., Donelson R. Manley, M.D.

    Clinic Hours: Monday through Friday 8 am — 4:30 pm

    They seem to have a dozen or so physicians for pediatric opthamology. I would call the director and see if they have any experience with EB and eye issues- since they seem to be prevalent in EB patients with Tripps' type.

    Many prayers for Tripp and his surgery.

    Stay strong.


  16. You are an amazing mother and Tripp is so blessed to have you and your husband. I can only imagine your frustrations and think you an incredibly strong person. I read your blog all the time and pray for you all daily. May the Virgin Mother wrap you in her embrace and give you strength and calmness when you need it most.

  17. What a beautiful baby boy, Tripp is! I pray the Lord Jesus surround you all with His presence. I shared with others to pray for Tripp, too. Hugs

  18. So sorry about the latest news. I am so frustrated at these doctors. I really don't know how you do it. I would have given him a piece of my mind.
    Try to contact Wills Eye Hospital, given to you above. This hospital is awesome and hopefully someone there could give your doctor a little bit of help concerning Tripp and his care.
    Will be praying so hard for your precious, precious baby boy. Love you guys. Love Leah's Nana

  19. My prayers are with you all. I hope Tripp can get some relief with the eye procedure. And don't forget to take of yourself.

  20. It will be worth it. God is just and Tripp will be rewarded. And so will you and Randy. God will have vengeance on the evil one and He will bring peace and joy and healing to the broken. Your joy in heaven will be beyond words to see your son perfected without pain, without sores, filled with joy to the glory of God. Hang in there sweet sister. Your rescuer is working.

  21. Andree Abadie MacDonaldSeptember 7, 2010 at 12:00 PM

    Tripp remains in our prayers for his eye surgery scheduled tomorrow. May you remain steadfast in your love and caring for him and for one another. I enjoy your blog and because of it, Tripp remains on the top of our prayer list. Andree Abadie MacDonald, Harahan, LA

  22. Courtney, I KNOW there is a special place in Heaven for EB babies AND their parents. I don't know how you guys do it. I am most familiar with Jonah's care, and while it's so high-maintenance, he doesn't have the eye issues that Tripp has. That's such an added element of stress, I know. Always praying for you all in Birmingham.

  23. God Bless you, Randy and your sweet little man. Our thoughts and prayers are with you today, tomorrow and always.

    Clint and Kim Smith
    DFW, TX

  24. I will be thinking of you all tomorrow. Your family is so dear to my heart. Your strength astounds me. Be strong.

  25. Sending prayers your way Trip! Your mommy and daddy are so strong for you. I hope to hear good reports about tomorrow.

  26. Thinking of you and your wonderfully amazing Tripp.
    Love and hugs

  27. I learned of EB though Bella, the daughter of a college friend, Tim. I hope you can feel that our prayers are with Tripp, you and your family. We pray that Tripp's doctors are blessed with the wisdom in their treatment of Tripp and you and your family feel the strength of those praying for you. - Jay

  28. We have meet your sweet Tripp through Bella's blog (I work with Bella's mom). Sending prayers and positive thoughts. You know what is best for your baby and you stay strong and continue to fight for the best for him. Your love and perspective on life is awesome!

    Tina in NJ

  29. We don't know each other, but I met your precious little boy through Bella's blog too, and my heart goes out to you. I wish you strength and courage during Tripp's eye surgery today and pray that all goes well. I truly believe God is in control, He has a great plan and purpose for Tripp's life, and He will be with you this afternoon. Love and prayers from Ohio. Bonnie

  30. Hi guys...sending our thoughts and prayers your way...Hope the surgery clears the problem..I know it's scary..and I'll sing the praises of "EB stinks" with you anytime you need a partner!! :) I have never heard of the surgery before..I wish i had some insight for you..You're smart to research it..knowledge is power...and it's scary that as parents the health care providers look to us for the answers...My brain is drained from decision making on casey's behalf...stay strong and know we are always thinking of you and casey is always praying for his EB friend Tripp..hugs..beth (

  31. Sending many prayers for sweet Tripp (and you too).

    Denise WI

  32. Feel better soon Tripp!

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