Tuesday, January 26, 2010

Doctor Visits...

Okay so I know that it's been forever since I've written... I'm sorry.  You know when you just get in one of those funks... well I've been in one of those for a few weeks now.  And every time that I started writing a blog, it always got interrupted by me having to get up and do something.  And Tripp certainly has a "Mommy's about to do something she likes to do" sensor.  When he was born, I kept telling myself that it's only going to get easier because we are going to learn everything that we need to know and do.  But boy was I totally wrong.  There hasn't been a day yet that I've thought, "Wow, things are really getting easier."  I cannot wait for that day.  He is absolutely 24 hours a day.... 7 days a week, non-stop.  And I know what you're thinking,  'Why in the world isn't she getting someone to come in and help her?'  But the fact is:  I am Tripp's Mommy and this is my job.  I don't want someone else in my house doing my job.  AND, it's not that I can't physically do this, it's more difficult emotionally and how is someone coming into my house going to help me stop hurting when I see him in pain and see him struggling to breathe?   I know when I have had enough and I have my family here for me to let me rest when I absolutely can't go anymore.  The bottom line (and I hate to say this) is that I don't know how much time I am going to have with Tripp.  I may have the rest of my life or I could have only today.  But with all that's going on and with the odds against him... I certainly am not taking any chances.  I want to be in front of his face for every smile, every tear, every moment of his life and I will cherish every single second we have together, because I don't want to have any regrets.  No, this is totally not what I wanted, not what I expected, and definitely NOT fair, but it was handed to me... it hasn't been easy and I don't know if it will ever get easier.  But I am so in LOVE with this child that there are no words that can express what I feel when I look at him.  And that's all it takes to keep me going.  The nights haven't been so bad.  I'm getting up to suction a good bit, but then he goes right back to sleep.  He would definitely be sleeping through the night if it weren't for all the secretions.

Anyway, we had 2 doctor appointments today.  First we saw the eye doctor, then the ENT.  The past week I have started noticing that the corner of his right eye was a little swollen.  Then it started having a lot of drainage and now there is a piece of what looks like red beefy skin hanging down in the corner of his eye from his top eyelid.  The doctor said that it could be one of two things:  Symblepharon (which she said is sometimes seen in EB but I've never heard of it, where the tissue from the eyelid can fuse to the eyeball).  She said if that's what it is, then it will eventually need to be snipped (in the Operating Room... ugh.)  OR it could be a dermoid cyst, which won't go away but we can keep the swelling under control with the steroids (surprise, surprise).  So she referred us to a specialist because if he does need surgery eventually, she doesn't do that... the specialist does.  So we will see him next week on the 2nd.  She gave me some antibiotic ointment until then.  WHAT DO I THINK IT IS?  She couldn't really open his eye to see in it because he was so upset, but when he was sleeping and I lifted his eyelid, it sure looked just like a big sore to me.  Probably from rubbing his eye so much.  But who knows what it is?  I'm not the eye doctor.  Only time will tell... we will see if the antibiotic ointment helps I guess.  And if I could pry his hands away from his eye and keep him from rubbing it maybe one day it will have a chance to heal!  So then we saw the ENT.  I went back to her because the custom trach she ordered that I waited 2 months to get in (glad we didn't have an emergency) was the wrong trach.  It was shorter, not longer.  Which wasn't exactly a horrible thing, because it went in on top of the other sores. In fact, maybe it was heaven sent.  But for some reason my suction catheters that I was using (8F) don't fit in this new trach (and it's the same diameter.)  So I am having to use some smaller ones (6F) that we got from the hospital when he first got his trach.  And the smaller ones just don't do the trick when it comes to suctioning our all his secretions.  So we are having issues with that, but we will make it.  Anyway, the ENT said that from what she could see his airway looked pretty good!  So maybe changing out the lengths and the steroids will do him good for a while.  And I'm sure all of your prayers are working!  Thank you all so much and please keep them coming!

Oh and I want to send a HUGE Thank You to Leah's mom, Meg.  She sent us boxes of stuff, bandaging supplies, trach supplies, ointments, you name it.  It was such a huge help, especially since our home care company stopped carrying our duckie collars!!  Thanks, Meg.  I know that wasn't easy for you to pack all of those things up, but it was such a blessing to us.  We love you guys.

Once again, I'm sorry I've been such slacker with my posting... but please don't give up on me!  I guess I shouldn't promise I will post more often because it's just been impossible for me to sit down and have the time to do it.  But thank you so much to everyone who has been emailing me in concern.  I truly appreciate it and it really makes me feel good to know that so many people out there care about us and follow my blog!  All over the country!  There are really some amazing people out there.

Now for the pictures....
This is him right now as I'm typing... HINT: that's why I'm typing...

4 generations.

Tripp with his baseball... Oh so precious.

Falling asleep during bath...

Geaux Saints!

Who Dat, Daddy??


  1. I am praying for you. I know how it is.. Tripp is a fighter.

    Emelie from Sweden with Elly with JEB

  2. Tripp with the baseball is too cute for words. Oh my gosh he's so gorgeous!
    Sorry to hear about his eye ...... man oh man does EB suck. I'll be praying that everything heals up ASAP.
    And you are very welcome for all the supplies - I'm happy to help you guys out any way I can. And I completely understand what you said about not wanting to miss a moment of being with Tripp. I was the same way with Leah and I guess I was accused of being overly possessive but oh, well ...... I was blessed with every second I got to see her.
    Love and hugs to you guys!

  3. Those pics are adorable - as always!!

    Please know that I am always thinking about you guys and praying for you!!

  4. I have been away due to things needing my attention at home but I think about and pray for Tripp and you Randy everyday. We love Tripp so much and not just because his eyes are soooooo beautiful!

  5. I hate that things are so hard for you all. With every ounce of my being, I wish EB never existed. Always praying hard for Tripp.

    I just want to kiss those sweet lips of his!!!

  6. Hi Courtney:
    Those pictures of him with the family are wonderful. Hang in there girl, you are doing an awesome job. Always praying for your precious boy. Give him kiss for me. Love you guys, Leah's Nana

  7. Hello Courtney , Thank you from the bottom of my heart for letting us know how ya'll are doing. I know you have your hands full & don't blame you one bit for wanting to be there every second with him & I would also like to thank your wonderful family for being there for you as well as Tripp. You are doing an excellent job caring for Tripp, he is getting so big & more beautiful everyday. The pictures are so very precious. I pray for God to Bless Tripp as well as all the family members. Please continue to hang in there Courtney I love you so much & I'm so proud of all you do in taking care of Tripp. Love you all, Belinda

  8. I am so happy for an update. I can't imagine the emotional rollercoaster you must be on every day. I can tell you have great strength and I admire you for that! Tripp is very luck to have such a wonderful mommy and daddy! His pictures are so adorable, I show them to my 18 month old and she just laughs and smiles at him! It is so cute-she was waving to him last night!

    Oh yeah-sorry, but I have to tell you that I won't be cheering for the Saints--I am a Colts gal!! ;)

    I will continue to pray for you and Tripp!!

  9. hang tough guys..hoping and praying easier times come your way...you are always in my thoughts...email anytime..johnbeth91@aol.com...I remember vividly those nights when casey's trach first went in..He's almost three now and I swear I haven't slept through a night since he was born....

  10. I am so glad you could find a few minutes to update. It is good for you to vent and "talk" to others. Just know we are here, thinking of you and praying for all of you. You are an amazing mother, 24/7 is a tough road, and I know you love every smile and milestone, but still, lady, you get tired and stressed, and it won't help Tripp at all if you get sick or somthing. SOOOO, call upon those who can help you now and then and get some rest. I am sure your care package from Leah was so special and hard at the same time. That was really neat of her mom. She knew your need and wanted to help with your load. Praying in Iowa. Love-

  11. I really enjoyed my visit last week thanks for sharing....Love you Aunt Sharon

  12. I never post, but I just had to tell you that Tripp is the most beauitul baby in the world. You are an AMAZING mother and you inspire me everyday with your strength. What a lucky boy Tripp is to have you for a mother.

  13. Hello..Just wanted to drop a note...mom to mom...:) Don't ever feel you shouldn't ask for help. EB is overwhelming ..throw in a new trach and it's just exhausting. It is no reflection of your ability to care for your son if he gets a few hours of nursing care a day..I felt just like you..he's my son, he's my job..that worked well for the first year, but going on three years now, I grew exhausted..That's not to say, I don't still care for him. We have a nurse four days a week for 8 hours..I still bandage and care for him. I use them to do his wash and diapers, change his bed, set up the equipment for ME to bandage and bathe him and fetch me nebulizers as I sit with him. At night, they turn off the pulse ox that beeps when he moves or the feeding as it finishes..he doesn't need me for that..he's still asleep! And while she is fetching and setting up for me, I get to lay and have a few extra cuddles instead...so, what I'm saying is you are an awesome awesome mommy and do not feel you need to exhaust yourself caring for him or proving/showing him you love him.. He loves you with all his heart and always will ..so if someone else suctions him once in a while so you can cuddle instead, don't be afraid to take a small break from it. It is no reflection of your love or ability as a mom...I was JUST LIKE YOU..until I got completely burned out..three years later, I have to have help...Just needed to give you a little "mom to mom" lecture... :) You guys remain in our prayers..I hope Tripp kicks EB in it's ugly butt this year! hugs to you all..