Sunday, May 22, 2011

Dr. D's house call and updates.

Little monster man is my hero!  I could tell last week that he was catching something.  Sleeping more, throwing up a little here and there, thick trach secretions... but he continues to amaze me at how he doesn't let anything keep him down.  He's still been up playing his drums, shaking his little booty, and letting Papa ride him on his horsey in the evenings (now that's cute).  All the while, his little bo-bos are draining more and he's been running fevers.  

So once again, on Tuesday of last week, Tripp's amazing, wonderful, awesome pediatrician Dr. Defusco made a house call.  This time bringing all the necessary things for us to cultures his wounds, etc... and also brought him some cool birthday presents.  Yes, you can be jealous- she is the best:)  I planned bath around her visit, because she's never seen an entire bath from start to finish.  I wanted her to be able to see all of his wounds, our bath process and how everything works.  I feel so honored that she would take so much time out of her very busy schedule to drive an hour both ways to spend the afternoon with Tripp.  Tripp was super nervous and suspicious of her voice at first... and then when she was still here after he got out of the tub and singing songs with him... he warmed up to her pretty fast.  He even made her snap an click her tongue to the songs:)  THAT is the definition of a great doctor- no matter how long he/she has been practicing, or how much they know without having to research the books- it's all about going out of your way and caring for your patients.  And she's got that mastered.  

While she was here, we took about 5 cultures (neck, trach secretions, buttocks, leg wound, ear) and  a stool sample.  And I knew something was wrong when he slept until 6:30 PM on Friday- YES, in the bed- from the night- not even hardly moving!!  Then yesterday morning he was running 101.2 temperature.  So I was happy when the results came back yesterday so we could find out what was going on... but of course he's got pseudomonas everywhere.  And it's the hardest bug to prevent and treat (in my opinion).  In some areas that we cultured, an oral antibiotic will treat the pseudomonas- so he's started an oral antibiotic yesterday.  But in his ear, there is only one type of drop that the pseudomonas is sensitive to (which means it will treat) but if that drop doesn't work and his fevers continue, we will have to admit him into the hospital for bloodwork and IV antibiotics (to make sure the bug doesn't get into his bloodstream).  So I'm hoping we will know by early this coming week if it's helping.

  No matter how careful and clean we are, it seems he's always going to have something going on, especially since he's getting more and more open sores daily.  But that's not going to stop us from being hand-washing Nazi's.  I made all new signs- for the back door, over the sink, in the bathroom.  I'm even going to start asking people to take off their shoes when they come in.  I mean, think about it... your shoes are the dirtiest, most disgusting things.  No telling where you've stepped or what you've stepped in.  I should've done that a long time ago, I know.  But it just seems like some people still don't get it.  I know that I wouldn't want the bug I pass on to Tripp's open sore to get into his bloodstream and cause him to be in the hospital.  You know?? ... But I guess not everyone thinks like that.  So I'm here to remind them:)  And it doesn't matter if you just left home and took a shower or if you washed your hands before you left the house... did you touch the door handle? or your steering wheel? or the buttons on your car radio???  All of those places have germs.  And when you come out of the bathroom... I mean REALLY- does that even have to be explained??  So before you touch my little pumpkin's toys... SCRUB HARD. 

So last week... before Tripp's birthday, Mr. Bill Capo (from WWL Ch 4) came back to the house.  He had been asking for a while if they could do a follow-up story on the response we got from the "Angel Baby" broadcast and I just hadn't been up for it... too much going on.  But when he called this past time, he convinced me to let them come.  They wanted to do a story on Tripp turning 2 as well.  So they came and did an interview with me and they were going to try and get Tripp up and playing- but he was not having it.  He was so suspicious of the two strange voices in here and the big lights.  And he knew we were trying to intice him with the drums for a reason.  He stayed in that rocking chair and wanted nothing to do with them:(  I don't know when the follow-up story will air yet- he hasn't told me.  But with all the flooding going on, it will have to wait!  I'll let you guys know:)

We are also in search of some cool toys for visually impaired kids, so if anyone has anymore ideas, please either e-mail me or leave it in the comments!  We would appreciate the suggestions!  Tripp's eyesight is pretty much gone.  I think he can still see shadows and bright lights, but I can tell it gets worse and worse each day.  But he has adapted SO well.  He knows where everything is in his one little area.  He knows exactly what something is the second you place it in his hand and he knows exactly where to find any button on any toy.  His sense of hearing has really stepped up it's game, too.  We just have to pray his little ear canal stays open enough for him to at least be able to hear- his right ear canal is so tiny and trying to close up (I think because he always lays on that side- and there's no turning him, he turns right back).  

I want to thank everyone again for the amazing amount of support.  I wish I could list every single person who has helped me either emotionally, financially or physically.  It's over-whelming and I am so SO grateful to each and every one of you.  I won't go into detail on the blog about this... but I want everyone to know how much their kindness and generosity has helped me through these very difficult circumstances that I am under.  I don't know what I would do without the support from such thoughful, selfless people.  I know I say this all the time, but all the good things that have come from Tripp's disease (the amazing people we have met, the lives he has touched and changed) helps me understand just a little why he's having to suffer so much. 
I hope everyone has a great week! 

(This is what happens when you say "Smile for the camera!") 
Little HAM.



  1. I hope all goes well and the medicine does the trick for Tripp.. I think your doctor should be honored in some way. So nice of her to do that.. (I love my doctor but yours trumps mine). Tripp is amazing as your are.. Praying all is well for you and him..

  2. You are really blessed to having such a wonderful doctor! Her dedication to helping Tripp is inspiring. I wanted to let you know too, Daylon's hearing was all but gone by around 6 months because his ear canals had just closed up and the dr. recommended that an ENT go in and try to open it. Well, we just didn't have a good feeling about it (sounds like more damage could be done, ya know?)and declined so the ENT subscribed these drops. They couldn't remove the scarred up walls of his ears, but the skin that shedded could be washed out. Anyway, it worked! His hearing isn't 100%, but there was a big improvement. I looked for the bottle to tell you the name, but I can't find it (we just moved and I'm not what you would call "organized" yet :) ). If you're interested, you could try discribing it to your doc.
    Well, I hope you have a great week! I'll be thinkin' of ya'll!

  3. Tea Tree Oil will help get rid of Pseudomomas! Joey has it too, on his skin and colonized in his lungs too:( I mix the oil with zinc oxide and aquaphor and apply it to the skin. I have used it myself and I don't think it stings anymore than any other ointment when applied to an open wound.

  4. in response to your quest for toy ideas: I don't know if you have it already but crayola makes a drawing pad, that as you draw it plays music in response to how fast or slow you are drawing, i bet Tripp would like that. here is a link:

  5. Tripp is such a precious little boy.

  6. Thanks for continuing to update! I think of you and Tripp often and hope you can stay out of the hospital.
    Best, Lisa

  7. I thought I should stop "stalking" you and instead drop you a note and let you know, "I am here! I read your blog!" :) I don't "know" you, but I love you so much, and love your little Tripp so much! I am so thankful you take the time to post on this blog.

    And can I just tell you how amazed my whole family is by Tripp's amazing drumming talent? He is so incredible, and we are all calling him the Bach of drumming. :) He is so talented!!!!!!!

    Anyway, we are brainstorming ideas for toys for Tripp and will let you know if we have any grand ideas. :)

    Thank you, again, for blogging, and know our love and support is going out to you and your family.


  8. Love you, girl. I SO wish we could do more for you and Tripp. Please know that we are praying for him and for you.

    Jackson, my 7-year-old, just came in and said "it's so hard to believe he's smiling - he's so brave!"

    Please give that sweet man a big kiss from his Team in TX.


  9. I always love your updates. I am praying for Tripp to get well soon. I hope his meds work fast and his fever goes away. Love and hugs to you always.

  10. Precious...just precious! Thanks for the update, it's alway good to hear how your little man is doing! Hugs!

  11. Hi Courtney: Thanks for the update. Your doctor is heaven sent. God even sends the right people into your lives.
    Great idea about taking your shoes off. Meg always had people take their shoes off before going in to see Leah. I admit I would forget sometimes but Meg always made it a rule. No shoes around Leah.
    Praying that the medicines work and no hospital stays for Tripp. Love that son of yours. Take care of yourself and Keep the Faith. Love you guys. Love Leah's Nana

  12. Keeping you all in my prayers.

  13. Hi Courtney,
    Thanks for the update, wish it were better news! My family and I will continue to keep Tripp in our prayers. My son often asks how Tripp's doing if I haven't given him a report in a while. We love watching Tripp's videos. My husband and sons play drums and we're all so impressed with Tripp's playing.

    Here's links to a few toys that I came across during a quick search this morning. Hope this helps.

    Keeping you and Tripp in our prayers,

  14. I pray for Tripp daily. You have both touched my life. I pray I am half the mother you are.

  15. His pictures are so precious!! I TOTALLY understand the no shoes and scrub scrub scrub... My daughter has half a heart and she is at high risk if she gets sick! In fact between birth and 5 months old if she even got so much of a cold they said she could die! This was in the middle of flu season. We did not go anywhere unless it was 100% necessary, people were not allowed to come over, etc. So many people get offended and just Don't Get It!!! I REALLY don't understand how people can't look at these sweet sick children and not follow the rules! My Ella is 9 months old and we still don't let people touch her... even if they STILL try :/ Prayers for your little man!

  16. I'm so thankful to have 'met' your family here on your blog. I was so impressed with Tripp's drumming video! You're an amazing family and my heart and prayers go out to you.

  17. I want you to know something... Today, Tomorrow - Five years from now... your son has made a difference in my life. Many times, at the end of my day - when I have zero patience left, no energy, and I'm able to climb into my bed and relax - I think of you. It's then that I realize how incredible YOU are - and how strong your son is! You never get to rest - you always have the worry in your stomach. You don't get to be "done" every night at 9pm.

    So - THANK YOU. Thank you for blogging - for just doing what you do. You are Tripps Hero ya know. HE knows too! You're in my prayers every single night - and I'm willing to bet THOUSANDS of others too!

  18. Courtney,
    You are an amazing mother. You give strength and joy to us readers as you and Tripp share your journey. There is a list of toys for blind children at that may give you some new ideas for toys for Tripp. Look under info about blindness for parents and teachers then under parent resources.

  19. Love that little boy so much, his smile always makes my day! I'm always checking for posts because I love watching his videos, his drumming is amazing and his dancing just melts my heart!
    Found a few toys that he might enjoy, they look fun!

    Keeping you in my prayers!!!

  20. You. are. amazing.

    I've been reading for a long time, but never commented and seriously I just had to say I am in awe of your strength. I'm a single mom of two kids and just normal everyday life is difficult enough and you're doing an amazing job raising your sweet angel baby. He is precious and I'm saying prayers for you both.

  21. tripp's such a trooper. we shoudl all take a lesson from him!

    as far as toys for the visually impaired, check out ( APH - american printing house for the blind). they have tons of toys/activities for people with vision impairments. i believe (at least here in NY) if you can get a dr to register tripp with them as a child with a visual impairment - you'll be eligible for FREE stuff from them. its some kind of federal quota/waiver program. they have the eligibility critera on their website.

    here's a toy many of my students have enjoyed

    hugs all around!

  22. Courtney, I just said a prayer for you and your family for peace, joy, patience and wisdom to get through this situation. I prayed for Tripp's doctors to have the wisdom to help him overcome this awful disease. Last but not least, I prayed for Tripp and that he can be pain free and the sores to go away and for him to be able to breathe, see and hear perfectly. I hope this post gives you strength and peace. Praying for you from KC!

  23. I know there are many more current blogs as far as updates for your little guy, but I can't stop myself - I have to comment. That has gotta be the cutest smile I have *ever* seen. Holy Guacamole!!!!! :DDD