Sunday, February 14, 2010

Happy 9 Months Precious baby boy.

Happy Happy Happy 9 Months to my precious baby man.  I can't believe you're still fighting hard after 9 whole months.  YOU ARE MY HERO.  I love you with every ounce in me.  You are my world.  You are what keeps me going.  No one knows what pain really is my baby... may we never take one single second, one single minute, or one single day for granted.  You are God's child and you are living this life of pain and sacrifice so that all of us can be thankful for what we have been given.  You will change so many people lives in your one lifetime.  YOU make me smile.  I LOVE YOU. 
Love, Mom


This time, I think I'll start with the positives first, because I am soooooooo far gone it's not even funny.  I'm exhausted, drained, ticked off, and pretty much just mad at the world.  Anyway, positives... I forgot, sorry.  Randy and I got to go out to eat last night!!!!!  Finally!! Long, long, long overdue.  It was so so so so so nice.  I can't even tell you.  My mom, dad and sister all watched Tripp while we went.  I could not thank them enough for a couple hours of freedom to try and get some sanity back.

Ok, that's it with the positives.  I don't know if Tripp has a cold, or just doesn't feel well lately.... But I am pretty much about to lose it if things don't get a little better soon.  The past few nights have been SO absolutely horrible that I got to a point where I wouldn't have cared WHO was in my house helping me... I just wanted a solid 30 minutes of sleep.  He is at the point right now where he cannot tolerate the big humidifier on either.  I've tried every single setting and he just fusses and fusses when it's on.  But if I take it off while he's sleeping, he dries up.  SO SO SO frustrating.  I guess he does good during the day because he can cough the stuff up, but when he sleeps, it all sits and dries up.  But the humidifier I guess makes everything too lose and we are up allllllll night long.  I don't know.  I'm so over it though.  And it would be different if I could sleep during the day, but I have to wake up and drink my coffee just to make it through the morning and then I'm running around trying to get anything done if he takes any kind of nap.  I just can't sleep during the day.  I tried yesterday, but my mind was just racing.

So I've tried to blog like the last 3 days and every time I start one, I get distracted and then I'm never able to get back to it.  We went to the GI doctor on the 11th... whatever day that is (I'm too exhausted to try and think.)  She scheduled an Upper GI for Friday.  Just to see if his esophagus is narrowing with strictures or whatever.  We may or may not just walk out depending on what they tell me he has to do.  I am NOT forcing a nasty barium down his throat with all those sores.  Just not doing it.  Sorry.  So if he happens to be a good boy and does well, then fine.  If not, it's SO not worth it to me.  Anyway, she also asked how long I planned on keeping him on the steroids.... my perspective is:  if the steroids help his sores (mouth, body, whatever)  I will keep him on them.  If they make him happy and comfortable... as LONG as possible.  Because I'm not even thinking about when he's 16 years old what the steroids could do to his body.  I'm thinking NOW, today. tomorrow.  And no further.

To top everything off, today was bath day and I decided that I wanted to do his trach first and get it out of the way because he wasn't breathing well to begin with and he's always too tired at the end of bath.  SO he's NAKED on the table and decides that he can't breathe.  I salined, and salined, and salined.  I could hear it in there, but it just wasn't coming out.  He was coughing and coughing, and breathing so so hard.  I did the ambu bag to try and push it down, then I brought the big blue tube humidifier in the changing room to try and break things up.  He was exhausted, upset, and that made everything so much worse.  And with him being NAKED, we couldn't even pick him up and console him because the last time I picked him up naked to weigh him in just a towel, his skin peeled off.  SO there weren't many options, but he finally calmed down.  I think it was my punishment because earlier today I was so tired of seeing him miserable that I prayed to God to take his pain away.  I told him I didn't care how he did it, just take all of his pain and misery away.  And then he scared the you know what out of me.  I told God I was sorry and I would never ask him that again.... God's Will be done.

So anyway, I'm moody... tired... aggravated... stressed... and my whole body hurts.  And I won't ever ATTEMPT to tell you about Tripp's supply company and our issues with that.  I'll save that for another day.  My house is clean thanks to my mother for rocking little man after his bath so I could straighten up.  It's amazing how what a clean house can do for me.  Oh, and Happy Valentine's Day :)


  1. Oh honey! Please think about getting some help! I know how hard it must be to turn that over to someone else, but you have GOT to get some sleep! Even if its just for one night. A good night of sleep will change your perspective on everything.

    I wish I lived closer so I could help you.. but since I don't, I will help with prayer.

    Happy 9 month birthday Tripp!!

    (HA! my word verification is SUCKI! - isn't that fitting!)

  2. I don't even have the words to say to express how this post made me feel. My heart just hurts for your family and your precious little Tripp. I am praying for you as I know many are.

    Big Hugs,

  3. Bless your heart. My heart just breaks reading this. Is any kind of respite care available?

    Please know that I am sending prayers and love your way.

  4. I've followed your blog for a long time, but only commented a couple times. I echo what the first poster said, you've just gotta think about getting some help. Please don't take that advice in an offensive way. I KNOW you're there for Tripp and your his mommy, but there's only so much a single person can do before they just give out. Even if it's someone to come in and clean for you.

    heck, I'd do it for you for free if I lived near (Yes, I realize you don't know me from Eve know what I'm sayin.)

    I'm praying for you. Even through a blog, I can tell your frustration level is up to here. Sleep can do wonders. Tomorrow is a new day and I pray it goes well for you and Tripp.

  5. Two of my kids had had barium swallows done and both time the nurse just added some barium to their bottles. So they didn't drink straight barium. Hopefully that'll be the case for you guys! Also, have you tried National Rehab as a supply company? They are WONDERFUL and all you have to do is give Bill your info and what we need. He takes care of the info and supplies are sent 2 day UPS. I hacve NEVER had an incorrect order in the 5 years we have been using them!

  6. I'm so sorry that he is having a hard time, and he is in that much pain, I no it stinks to see your child in pain. I will be praying for you and Tripp. I hope you can get some sleep, and get some help. When i was reading your blog my heart just broke and i had tear in my eyes. I hate EB and i hate it bc these kids with it are in so much pain. Im praying for you. Take care.

  7. I´m so sorry. I think I have a hard time and then I read THIS. I think of you and little Trip<3<3

    Emelie and Elly

  8. Hi Courtney:
    My heart is breaking for you. I read your update and thought about Meg and how she felt with Leah. It is sooooo hard to see your baby in pain. I HATE EB. Please hang in there. You know that we are all praying for your beautiful son. Happy 9 months old Tripp. Love you guys. Love Leah's Nana

  9. Happy 9 months Tripp, you're getting so big precious baby! I wish I lived closer and I would help you, I feel like I know you guys already, I've been following your blog for sometime now and I'm totally in love with baby tripp, he's sooooo CUTE!!! I love his beautiful eyes. Courtney, hang in there momma, I know it's hard, but Tripp really appreciates all the love and care you're giving him, he loves you and thank God your mom and family help you. I really pray for a cure, or at least a miracle for Tripp to heal, it hurts my heart to read when he's in pain, I just want to hug him. Thanks for the update, I will keep asking God to help him by healing his sores. Take Care, luv you guys!

  10. Ugh, I hate to hear how rough things have been. Sometimes I think no news is good news, but that's not the case. My heart drops to hear about all of these struggles that you and Tripp go through at all hours of the day and night. Praying hard each night for all of you. Happy 9 months Tripp!! I have said it before, but he has touched my heart so much.

  11. Courtney, I hate that I am not in a position to help you. I hate that you have gone through and continue to go through so much with your little gorgeous baby. I hate that God's plan is so far above and beyond what we can understand that this all makes no sense to me!
    I do love Tripp though and if prayers are what are going to see you all through this, then hold on, cause we're all praying!
    And I agree about not concerning yourself with future issues from case that matters any.

  12. Happy 9 Months Mr. Tripp! You are a handsome boy. I love those eye lashes. My son would only watch Handy Manny but I told him how stinkin cute it is when you dance and kick your feet to the Hot Dog song. So now when we here the hot dog song we dance to it and think of you!

    P.S. I just want you to tell your mom that even though I have never met her. She is MY HERO! Not only is she an AMAZING mother to you she has mad me a better Mother! And such an inspiration!

    Thoughts and Prayers Always

  13. I am so sorry that you had to go through a choking/not-breathing episode. I work with a young lady on a ventilator and it is hard for me to hear her struggle to breathe. I am wondering if you have ever heard of a Cough Assist. It's a machine that functions like a "cough" for people who can't cough well enough on their own. It can attach to a trach. It pushes air in and out quickly, just like a cough, and makes it easier to move gunk up to the top of the airway, to suction it all out. Many times I have heard the young lady I work for try to cough, but after she uses the Cough Assist the gunk gets up into her trach and it's easy to suction out. It might be a good thing to look into!

    - Sarah in MI

  14. I am sitting here sobbing, I just can't imagine how you cope....all 3 of my kids have heriditary spherocytosis..and they required frequent blood transfusions as is very hard on me..I wish I had your strength...bless you and your sweet little man...

  15. You have no idea who I am but I have been following your blog. You are AMAZING!