1.) I found out today by talking to the EB nurse in Cincinnati, Geri Kelly, WHOM I ADORE (she's maintained my sanity for a year- thank you, Geri:) that the only little girl that she knows of who's had this eye surgery done is from Canada. Comforting, yes I know... BUT this little girl (Zainab) had this AMT (Amniotic Membrane Transplant) done around March and is doing well from what I hear. SO that is great news to me. I plan to email her father shortly and find out anything else that I need to know :)
2.) Dr. Eustis, Tripp's opthalmologist, has never done this surgery before, nor has the corneal specialist at Ochsner, Dr. Shaw, NOR has the doctor that he called in Cincinnati. But they've all HEARD that it is supposed to do great things :) Don't get me wrong- he's an EYE doctor, so he's done similar things- just not this exact procedure. I have complete trust in Dr Eustis (after just talking to him on the phone for about 20 minutes). What else can I do but place my trust in him and in God that everything will be okay? So that is what I am doing. So maybe none of these doctors have done this- but how great will it be if it helps Tripp, and then in return can help any other EB child out there.
Ok so today I was having a nervous breakdown because Dr. Eustis and I hadn't really talked THOROUGHLY about exactly what is going to happen tomorrow. We had talked about this amniotic membrane each time I had brought Tripp to the doctor, but this last visit we had just decided that it's the last option and it needs to be done. So we scheduled it without really going into A LOT of detail what it was going to entail. That is why I called Geri, the EB nurse, today to see if she could tell me a little more about it. Well Geri had heard of it and that it's done great things, but the only case she was familiar with was the little girl in Canada. Anyway- so me, Nervous Nelly, put in 2 calls into Dr. Eustis, making SURE he would call back because I did not want the first time that we talked about this surgery thoroughly to be in the Pre-op room. He called back and explained things to me... I'll try to explain it to you the best I can:
He will be first exfoliating the tissue (blister) underneath is eyelid to the point that's it's bleeding. He will then take the amniotic membrane and stitch it in 4 different spots to secure it to the inner lid. The stitches will be dissolvable and he says they will not cause friction on his eyeball. This amniotic membrane should dissolve itself in about 4-5 days, hopefully causing Tripp's eye to regenerate it's own smooth surface again. He will also trim/snip (I hate that word) off that extra piece of skin that is fusing down is the corner of Tripp's right eye. So that will hopefully be gone. From what Dr. Eustis says, this amniotic membrane stuff is used for a TON of things and usually has very good results. I also explained to him how nervous I am about the actual "manipulation" of his eye/eyelid. He reassured me that he will take every precaution possible and will do the least bit of manipulation possible to his lid. He even said if he had to "lift" the lid and work underneath it, instead of "flipping" it and inverting it that he would do that.
Our favorite anesthesiologist will be working his case tomorrow. That makes me feel a whole lot better. His name is Dr. Corsino, and
1.) he has kids (you can tell)
2.) he has been with Tripp through 3 surgeries already
3.) he knows EXACTLY what he can and can't do when it comes to tape, touching, etc.
I wish some of these doctors could babysit :) Anyway, they will be doing both eyes and also drawing blood work for a new drug that they want to start in place of the steroid. I was going to ask if I could go back into the OR with him, but honestly I just don't think it's a good idea. I think it will cause more stress on me and more stress on the doctors. I feel that I have made myself clear (and will have the chance to make myself even more clear in pre-op) and I really feel VERY comfortable with Tripp in the hands of these doctors. I feel like they really do care about him. How fortunate are we that we have doctors here in New Orleans that are WILLING to do a procedure that they've never done before? That means that we don't have to travel across the country to get something like this done. Trust me, I am VERY grateful, and I place complete trust in these excellent doctors.
So, please, keep my little trooper in your prayers tomorrow. And also, say an extra prayer for the doctors, that they will know exactly the right things to do. As of now, we are planning to do both eyes. That could change depending on if Dr. Eustis looks at the other lid and thinks that it looks smooth enough to leave alone. He said we will talk about that tomorrow. So we will play it by ear. I will try to update you guys either by Facebook or Twitter tomorrow while in the waiting room. Thank you from the bottom of my heart for the love and support all of you have shown us. It's gotten us through "yesterday" and it will be what gets us through tomorrow. Love all of you :)
Love,
Sounds like "the little knight" will be in excellent hands for his surgery tomorrow. I will say extra prayers for Tripp, you and Randy tonight.
ReplyDeleteSending up prayers! Hope all goes well! Love to you and yours...
ReplyDeleteI pray that God's love and light bathe you, Tripp, Randy, and each member of the medical team tomorrow. I pray that you hit all green lights on the way (why not?), and that the day just rolls effortlessly from moment to moment and ends with the three of you at home, peaceful and relieved. Thank you for having the courage and faith to trust that God will watch over these docs as they cross their own professional threshold tomorrow into a new area of discovery that may in turn help many, many more people in your geographical area. We are pioneers!
ReplyDeletePraying for tomorrow's surgery. For all of the physicians involved, for sweet Tripp and for you guys!
ReplyDeletePrayers from Arkansas.
ReplyDeleteMichele
Oh Honey! I will definately be there with you in spirit tomorrow! You will have all my prayers all day long!
ReplyDeleteSending many prayers for Tripp tomorrow. He is so strong and he will make the surgery a sucess. I am glad you feel so confident with these doctors. It sounds like they want only the best for Tripp. Hopefully, Tripp can open his eyes pain free (very soon).
ReplyDeleteWaiting for your update!
Beth
A prayer was just sent up to God by us!!! and we will do it again tom!!! We loved being with you tonight "little man"!!! Your mommy and granny are my heroes!!! And you are the strongest lil guy I know! Your bath wore me out, but you were as calm and sweet as can be!!! Love to all of you!!!!
ReplyDeleteShelly, Camryn, and Chloe!!!
Sending prayers that everything goes as planned and helps sweet Tripp.
ReplyDeleteBlessings from WA!
I read your blog regularly, but haven't commented before. Will be thinking of Tripp and the doctors tomorrow.
ReplyDeleteWhen you get time again, I was wondering if you might post whatever you know about amniotic sac donation? I am currently pregnant and would love to donate. After my last pregnancy, I donated my placenta to a local organization that trains search and rescue dogs and was planning to do the same this time...if the amniotic sac could help others, I'm all for donating that as well!
Sending thoughts of peace and strength from the UK.
ReplyDeleteSending prayers your way.
ReplyDeleteI am praying for you, your husband and baby Tripp today. You are all so strong. You have a beautiful family.
ReplyDeleteSending prayers for a successful and uneventful surgery and recovery for sweet Tripp. He is definitely a trooper!
ReplyDeletePraying today for Tripp (7th).
ReplyDeletePraying for Tripp, for your family, and for God to guide the doctors' hands.
ReplyDeletePrayers for the best outcome from surgery for your precious Tripp.
ReplyDeletePraying that everything goes smoothly and the doctors are able to heal your sweet boy. Thank you for taking the time to explain everything and keep us updated.
ReplyDeleteMy thoughts and prayers are with Tripp today..
ReplyDeleteThinking and Praying for you and Tripp today. We Love Yall Very Much!
ReplyDeleteOur family always tries to remember Tripp in our prayers. I'll make sure to say a special prayer today for your little guy. We've not known what to do for Daylon and his poor eyes and I'm learning a lot from your journey. Take care and give Tripp all our love from MN!
ReplyDelete