Tuesday, September 21, 2010

Tripp to the ER.

Sunday around 5:00 pm I talked to Dr. Defusco about how he was doing.  He was still in horrible pain and had not wanted to get off the rocker.  He wasn't sitting up to play, wasn't smiling... nothing.  By this time, the pain had been this severe for over 3 days, so we needed to do something.  Dr. Defusco and I talked for a while going back and forth with his symptoms wondering what this could be.  She called the ER pediatrician and spoke with him a while, and they decided that his symptoms could be something called an intussusception.  This is where your bowel kind-of "telescopes" inside itself and it could cut off the blood supply- it can be very serious.  So when she mentioned that, we knew we couldn't take any chances and she said she would sleep better knowing that we were sending him to get checked.  

So she let the ER doctor know we were coming and we packed up (takes about an hour) all our things as if we were going to be admitted (just in case).  You can never be too prepared- been there, done that.  We go to Ochsner in Metairie, so we got there at about 8:30.  This was by far THE BEST ER experience that we've ever had.  I swear, it was like everyone we came in contact with knew Tripp and knew exactly what I expected.  They didn't do anything unreasonable and they treated us with such respect.  The x-ray technicians were SO pleasant and SO gentle with Tripp, the nurses were great, the secretaries were great, the doctor was great.  I know, WE ARE BLESSED to have that kind of care for Tripp.  

They decided that from his abdominal x-rays and his symptoms that it wasn't an intussusception.  Then thought it could be possible C-Difficle, which is a bacterial infection that can be caused from taking antibiotics.  The Doc said that just all the diarrhea itself could be causing the pain by the bowel contracting.  So they took a stool sample and let us come home because it wasn't worth the risk to keep him in the hospital when he wasn't dehydrated (I've been drowning him in Pedialyte).  

But guess what?  C-Diff is negative.  I poked at my brain all day yesterday and finally realized that he could have a Urinary Tract Infection from all the diarrhea.  And if you've ever had one of those, you know they hurt like hell.  I noticed that when I was changing him, his diaper would be dry and then all of a sudden he would let out A LOT of urine while squeezing his legs in pain.  Yesterday was the first time I noticed that he was actually "holding" his urine in.  It must be hurting him so bad.  

SO... if that's what it is, hopefully this short round of antibiotics will take care of it and we can try and get back to normal.  Dr. Defusco is wondering if he really even had pneumonia now, because his chest x-ray looked the same when we took it again Sunday night.  So maybe that's just what his lungs look like... who knows.  But we know he had some type of viral infection with all the fevers he had for over a week.  

So here's the vicious cycle:  Eye surgery > catches something from the hospital > has to be on antibiotics > antibiotics cause diarrhea > diarrhea causes a UTI > back on antibiotics.  NICE.  Just hoping once we get him better, that we don't need another eye surgery.  Then we're back at square one.  

Speaking of eyes, his surgery eye isn't looking any better and it's almost been 2 weeks.  It's still really swollen and watery.  So I guess once he feels a little better, that will be our next thing to worry about- because there's ALWAYS something :)  Oh, and between all these "diagnoses," he's lost over a pound.  Thank God I fattened him up before all of this or we'd be in bigger trouble.  He's back on his regular "fatten me up" diet now, so hopefully we can pack the pounds (or pound) back on.  

I haven't been taking many pictures, because honestly, he hasn't played in over a week.  But I do want to share a book that I've been reading.  It's called Without a Word by Jill Kelly.  It's Jim Kelly (the Buffalo Bills Hall of Fame quarterback)'s wife.  The book is about their son, Hunter, who was born with a rare genetic disease called Krabbe's Leukodystrophy.  Hunter passed away at 9 years old.  And this book is about all of the struggles they had to endure in that amount of time (their family, their marriage), but mostly about what a blessing Hunter was to their lives.  It's like I could have written this book.  It's almost exactly our situation.  If you're looking for a new book- this one's a good one.  

Ok, I can't leave you without a picture, so I give you.... the hands of an angel-



  1. Courtney-Just wanted to let you know that I think and pray for Tripp and the rest of your family so, so, SO often. I know you don't know me from Adam, but trust me....you have lots of prayers going up at all times. Hang in there!

  2. oh Courtney, I'm sorry your little man is feeling so horrible. It must be so hard on you when you have to guess what might be hurting him. He is a precious little guy and I have always enjoyed your pictures and stories of Tripp. I'm praying for all of you.
    Kim M
    Waterford, MI

  3. Courtney,
    I know you shouldn't have to, but I love how YOU are the one who is able to diagnose Tripp's symptoms! No one can "read" your little man like you can! You go, Mama. Tripp is truly in the very best of hands - God's and yours. We will say some extra prayers that Tripp is feeling better soon!!

    Our best,
    Adrienne Provost, Palatine, IL
    (Caroline's mom)

  4. Hi Courtney I am a new follower and I read back a few weeks worth... my Tripp is a wonderful boy! I hope he starts feeling better soon now that you have sort of figured out whats going on with him. I have a little girl with special needs and a lot of health issues I know its a struggle but oh my a very worthy struggle.

  5. Rhonda, Rocky Point, NCSeptember 21, 2010 at 1:31 PM

    You don't know me either, but I found your blog through Patrice's awhile back. I'm so glad you updated, because I have been so worried about Tripp. I read your blog every couple of days to check on all of you. I always laugh at Tripp's antics and tear up when you post that he's having a difficult time (more than usual, that is). I have been so touched by having met Tripp and other babies with EB through Patrice's blog. The love and strength you parents have for your precious children is awe inspiring and the tenacity of your babies as they strive to develop and grow under such trying circumstances is an inspiration to me every day. Keep strong and please give Tripp an extra kiss from me...I am just another mom and grandma that has become a fan of your little superstar! Keep the posts coming!

  6. Hands of an angel... Beautiful Courtney! Precious little hands holding your heart! Ruling out BAD is GOOD~ praying Tripp feels better today! Love to you all!

  7. Hi Courtney: Thanks for the Tripp update. I am so sorry that he is still feeling kinda yucky. Do these EB children ever get a break?
    Hang in there and remember so many people are praying for your precious son. We all love Tripp and you too, Courtney girl!!
    Love and peace. Leah's Nana

  8. I'm so sorry your little man has been so sick. I hope he gets back to laughing, playing and making you smile soon.

  9. Saying extra prayers for Tripp. I hope he is back to normal soon.

    Denise WI

  10. I think you are the strongest mom in the entire world and I pray for you and Tripp every night!

  11. Right there with you. The vicious circle, head scratching, having to figure out diagnoses myself despite being around doctors, all of it. I get it. Bless your heart. Tripp and Randy's too. Love and respect, Tim

  12. I just stumbled on your blog, and need to tell you how totally delectable your boy is. He has an amazing mummy and daddy on his team. Really incredible. I hope for a good today for him today.

  13. Bless you guys...I'm so sorry Tripp is having a rough patch..you are one strong mama, I don't know how you do it..you are an inspiration to me..my dad just passed away..I talk to him daily and I told him about Tripp and told him to watch over him from heaven, as I tell my children their grandad is watching from heaven and is their guardian angel now..

  14. Hi Courtney! You don't know me.. I came across your blog and wanted to send some love. I will make a special pray for your little one tonight. Hang in there girl, Tripp is such an adorable baby and he will get all better. While reading some of your posts I realized so many things to be blessed for, specially after having some hard days with my 4 month old baby, nothing can compares with what you and your little angel has been through.. You are such an amazing mom! God bless you family!

  15. Sweet sweet fingers of a sweet sweet boy. I'm SO sorry he's having such a rough time. Praying for quick healing and for you and Randy to have rest and peace.

    Love from TX,

  16. Courtney,
    I have been following Jonah Williams story for a long time-my daughter is a 'friend of a friend' of Patrice's and she sent me to Jonah's page, so I could include him in my prayers. I first read about Tripp when Patrice asked for extra prayers for him--I check your blog often-and pray for Tripp daily. For Tripp, I pray for healing and that his spirit remain strong-I pray for strength for you, and that your Spirit and Faith remain strong-perhaps the hardest thing is to 'Let Go and Let God'-I truly admire your acceptance of God's will-and that you continue to fight for the best for Tripp. God Bless. Linda

  17. extra prayers being said for all of you. Tripp is such a handsome little man

  18. Hope Mr. Tripp is feeling better & that his eye is healing from surgery. I check in frequently to see how your little guy is doing & to say extra prayers for him & you guys too. I always wish I could do more for you guys, but for now I will just continue to send prayers your way.
    Brenda (Kansas)