Sunday, October 24, 2010

Update and Pics.

Hi... So we were supposed to go get Tripp's bloodwork done this week, but the nurse who draws his blood has not been available.  So again, we will postpone for Monday.  He actually has been having some good moments the past few days.  He got in his walker twice and scooted around (something he hasn't done in months).  And he's been standing up on side of the couch more, too.  I think he might be getting a little bit of his strength back.  I'm trying to be careful what I say because I almost ALWAYS jinx myself.  Like the other day, I was going to post his video in his walker... but ended up not having a chance.  And then he had a REALLY crummy day.  So when I say he's had "good moments," I mean exactly that... moments.  He's not really pulling up his legs in pain anymore, but he's still running little low grade fevers.  

And like I told my mom, we are only putting the topical treatment on the spot that we cultured and came back with pseudomonas- but he most probably can have it in other places, too.  So since he's resistant to the Cipro... the topical could be treating that one spot and nothing else.  So I don't know, we will see when we get the bloodwork back.  

And I have GOT to do something about his mouth soon.  Whether it be fighting someone to just put him asleep and just LOOK in his mouth to actually find out what's going on.  No one (whether it's a second, third, or fouth opinion), is going to be able to actually get a good look in his mouth unless he is under anesthesia.  HELLO. 

Every bath day lately, I think my mom, Tripp and I all have anxiety.   Baths have been BRUTAL. So I got in touch with Dr. Defusco and she told me that for bath I could go up on his morphine dose because he's on the lowest dose now.  So I did.  I doubled his dose... and my goodness, it sure helped.  Not the actual water part, of course... I don't know how that can't hurt no matter what- but after we got him out.  He was actually dancing to Elmo while we redressed him.  He wasn't drowsy or anything... he actually "sat up" to let us do his arms, which he hasn't done in about 6 weeks.  But you could tell he was a little bit in la-la land- but in a good way.  He was smiling and dancing... and mom and I even jokingly said "he's probably seeing things."  But I don't care if he was seeing blue elephants... as long as he wasn't hurting.  The past two days, we also started Ativan (anti-anxiety) with the morphine- but I think it's making him MORE anxious and irritable... so I don't think I'll be giving it anymore... at least not with the morphine.  I'm trying to wean the morphine, by giving a little less and a little less often.  But he's still acting like he needs it at times.  Nights have been rough lately.  It's like he doesn't even want to lay in the bed- he'd rather me be rocking him.  So if anyone has one of those old beds that you put a quarter in it and it rocks or vibrates... let me know- I'll pay anything :)

So thank you all so much for your post requests for EB Awareness Week coming up.  They are all great questions and I will try my hardest to answer all of them throughout the week, starting tomorrow!  My "blog friend," Jenifer (who helped me re-do my blog), also helped me create a graphic for my posts for the week, and she also added a grab button to the blog- on the right sidebar, so that when EB Awareness Week starts, if anyone wants to add the button on their blog they can.  Thanks again, Jenifer.  You're the best! 

"Mom, are you sure I should be taking these?"
(these are his probiotics... don't worry.  He likes to shake them to make noise)

"If I could just get this one toy... right... here."



  1. Still praying you will find the fix so Tripp can cope better with his pain. He needs the pain meds so keep them going. Sad to think of a baby that hates his bath so much. I love to see his eyes open. Peace be with you. Brenda U From MN

  2. He is such a beautiful child, and your such a amazing mom! I am praying for you all, and hope things keep getting better for y'all! I cant wait for my shirt to come in so I can wear it knowing I bought it for such a wonderful cause! Hope y'all have a wonderful week :)

  3. Courtney,
    Thanks as always for taking the time to send a quick update. Glad Tripp's at least enjoying a little playing time even if it's not for long right now. I pray that one day you'll send a note that he was able to enjoy his bath. I can fully understand you and your Mom's anxiety. Hope his bloodwork shows improvement next week. Pic's were adorable.

  4. I've had a better day myself knowing that Tripp has had some good moments. Thanks for letting us know.

  5. I will pray that the good moments Tripp is having will just keep becoming more and more frequent.

    Ativan is a big part of my vocabulary -unfortunately, because it is the only thing that stops my son's seizures. That drug makes him sooo loopy & just "off" for 24-48 hours. So I could certainly understand it maybe doing the opposite in combination with something. Poor little guys!

    Hugs from East Tennessee:)
    You are an amazing mother, Courtney.

  6. Hi Courtney: Thanks so much for the update and the pictures of my favorite little boy in the whole world.
    Glad that Tripp is feeling a little bit better. Glad to see that he is standing up for a little bit.
    You are amazing. Hang in there. We all love you and Tripp so much. Take care and give that special boy of yours a big hug and kiss for me. Love you guys. Love Leah's Nana

  7. Sweet SWEET baby. I have been checking to see how he's doing - am glad he's a little better. Will continue to pray for him and for you!!

    Love from TX,

  8. I love how you dress him in matching shirt and diaper (in a green way!) I am glad that you were able to find something that helps him a bit on bath days. I wish I lived closer and could come over and help you with anything you'd need, seriously !

  9. What a cute monkey in green!! He has such a twinkle in his eyes Courtney! I love the concentration as he reads the label on the bottle! Moments are good! Enjoy them!

  10. Ativan can cause disorientation and confusion, which may explain why Tripp seems "worse" when he takes it. I'm glad he is getting some relief from the morphine and hope someone can investigate his little mouth soon.
    Love from MN, Lisa

  11. Oh my gosh!!!!so adorable I love seeing all the pics you put of Tripp he always makes me smile:)

  12. just a bit of info....a pediatrician I saw once told me they make a contraption that fits on a bed that vibrates or rocks it. It is supposed to mimick a car ride. She was telling me this when I thought my baby had the colic. She had used it on her child.
    Good Luck