Saturday, September 25, 2010

Pick a diagnosis, any diagnosis...

Did we treat Tripp for a Urinary Tract Infection- yes.  Do we know if he really had one- no.  Is he better now- no.  So now our brains are saying, "What if it IS C-Diff?"  I think that's the only explanation of why he's still in pain, still has diarrhea, still losing weight, and still NOT HIMSELF.  Seriously, from the day of his eye surgery- September 8- he has NOT sat by himself at all.  He's been in someone's arms- either in the rocking chair, or us standing up.  And don't you dare try and sit him on the ground to play with his toys- you would think he was being punished.  I just don't know if he's been sick and weak for so long that he can't snap out of it- or if something really yucky is going on. 

So with C-Diff, you have to test 3 different stools to really call it "negative."  So yesterday I brought 2 more stools to Dr. Defusco's office in Destrehan so that we could test and be SURE if it's C-Diff or not.  Meanwhile, he's starting Flagyl- and being treated for C-Diff.  We are running out of options- and honestly, I'm kind of starting to get a little worried.  So the Flagyl (Metronidazole) is what we are treating him with and it is 4xday for 10 days.  AHHHHHH.  Sorry.  But if you would SEE the amount of medicine this child is on- adding one more makes me cringe.  I split them up throughout the day, but he has about 10 syringes full in the morning and 4 at night.  It reminds me of where I used to work, with the elderly.  I used to give some of them about 20 pills in the morning.  Tripp is like a little old man!  

He's back on his blended diet.  When he went in for his eye surgery, he weighed about 20 lbs 14 oz. (Mind you, this is with ALL his bandages on)- and that's the most he's ever weighed.  About a week ago he had dropped to 19.4.  And last night he was 19.6.  So I hope and pray that he is started to gain the weight back- because he canNOT afford to lose anymore- he's already a little skinny midget.  I always joke with him and tell him that he's the "Biggest Midget I know." 

So he STILL hasn't gotten his shots, either.  That would just be torture right now.  But he's going on being about a month and a half behind.  I know he's not exposed to kids, or a lot of people at all... but it's still scary.  If he gets anything that's more serious than whatever he has right now- it's NOT going to be good.  Because whatever this is threw him for a loop.  

I have to say- after seeing what Tripp went through these past few weeks, the Bone Marrow Transplant has been running through my mind a little bit more.  It would be a really, really tough decision.  And I don't really know enough about it, or how we would go about it.  But I have to say that the thought has been there.  I can't help but wonder "what if?" But there is the "what if he doesn't make it through the transplant but I would've had 5 more years with him?" And the "what if I don't have much more time, but the transplant is our miracle we've been praying for?"  There's no easy way to make that decision.  I guess it will all come with time.  Meanwhile, I'd just like to do a little research and talk to the other parents who children have been through it.  I don't know if the thought is just crossing my mind because he hasn't been doing well or what.  But I just keep thinking about how he's ALWAYS going to have these issues and he's ALWAYS going to be in pain.  And the worst part about this whole thing- is that he is SO cognitively there.  He will KNOW that he is different and KNOW that his life "stinks."  So do you risk the life he has for a chance at a better one?  There's no easy answer.  

So anyway, that's where we stand at this point.  I'm hoping this new medicine will be the fix, and if it isn't... I think we are at a stand still.  He's had almost every part of his body checked, blood work, x-rays, stool samples... I don't know.  But I do know that I am SO GRATEFUL to have Dr. Defusco as his pediatrician.  I don't know what I would do without her.  The way she cares about Tripp and how she goes out of her way for him makes me feel like we are in really good hands.  



  1. Well darn...I was hoping Tripp would start to perk up, poor little man. I hope you find out what's causing his illness soon and can get back to "normal"! Best wishes from Minnesota.

  2. I am so sorry this BEAUTIFUL baby is feeling so bad. I am praying for Tripp as well as your family. Hugs and Kisses!! Love, Monica

  3. Courtney -
    You don't know me, but I read Tripp's blog faithfully. I just wanted to tell you what a great mommy you are. God sure knew what He was doing when he blessed Tripp with you as his mommy! As much as Tripp has gone through (and will go through) in his life, you've been right there with him. It is agony for a mommy to watch her baby hurt. With your amazing instincts and God's guidance, I firmly believe you will know WHAT'S right for Tripp, and WHEN it's the right time.

    God Bless!

  4. So sorry Tripp is hurting. I am praying for Tripp from Maryland. You are a wonderful mommy, keep up the good work! Tripp is such a beautiful little man.

  5. Still praying for your family, Courtney. I wish there was something I could do for you guys. Hugs to you all.

  6. I've been reading about Bella and Daylon...bone marrow transplant is a BIG deal and I think the only way to get to the right answer is through prayer. But how amazing to see Daylon without all the bandages and so playful! It is truly amazing that this can be done. Keep praying until the path that God has for your family is clear. I will be parying for you as well for God to shine his light upon you and speak clearly to you. I love you Court. Please give Tripp some snuggles and tell him they are from me and all my lil munchkins.

  7. Poor guy. I wish they could figure out what's causing his discomfort & illness. It's so hard being a parent & not being able to "fix" your babies. I read Jonah, Daylon & Bella's blogs also & am always praying for all your families. I may not be able to do much, but I always hope that the extra thoughts & prayers help. You all show so much faith, patience, perseverance, etc. The truth is not everyone could/would do what your families do everyday. There is a reason God chose you to be Tripp's mommy & how right he was to do so. That little boy is so very loved & cared for.
    I can't even pretend to know or understand exactly what your lives are like on a daily basis. But I do admire your strength. I firmly believe God will never give you more than you can handle, though I also believe he "tests" us sometimes too. :) "If HE will bring you to it, HE will bring you through it." One of my favorite quotes, probably paraphrased slightly. lol
    I hope you get answers to what your Tripp has going on soon.
    Have they tested him for salmonella? My son got that when he was 2, never did exactly figure out from where, though I think we finally narrowed it down to a fastfood restaurant. But for about 2-3 weeks he had horrible diarrhea, stomach cramps, fevers, etc. Sorry, I'm always trying to diagnose something. :) Somedays I think I really should have went to med school & then reality sets in & I realize I sure don't have the patience/drive for all that.
    Hope your little guy gets better soon!! Many, many, many thoughts being sent your way.
    Brenda (Kansas)

  8. Holy crap, that was a wordy post. Sorry. :)
    Brenda (Kansas)

  9. Praying for your sweet Little Man Tripp from Bowie, MD. I hope that this new batch (so much medicine) of medicine is the answer and Tripp will be feeling better very soon. Judy T.(Leah's Grandma)

  10. Hi Courtney -

    Praying that whatever is causing that sweet little man to hurt so much will go away quickly. Also praying for you and Randy to have peace and wisdom to know how to best care for Tripp (and whether BMT is the right option). I wish there was something more I could do!

    Can you do the "BRAT" diet for his blended diet? (Bananas, rice, applesauce and toast?) I don't think it would help the pain but it might slow down the diarrhea? Just a thought (a VERY LITTLE one!)

    Hope he's better soon - the Team in TX is praying!


  11. praying for Tripp to be much better tomorrow and well again asap. Hugs to you and thanks for posting updates. May God bless all of you and restore Tripp to his precious little self. He is so adorable and you are an amazing Mom.

  12. Courtney,
    I found your blog months ago and have been reading it faithfully. I check every morning and night to see what is posted and what is new with Tripp. I don't know you personally - I am 30 yrs old and live with my husband in Cincinnati, Ohio and our 2 kids, Andrew who is 3 1/2 and Emily who is 18 months. I pray for you and your family and Tripp every day and I wish I could help so much that my heart hurts. I also read Bella's and Daylon's blogs and pray for them too. Other than daily prayer and spreading the word about EB to everyone I know, I sometimes feel so helpless. But I just hope you know that no matter how dark things sometimes look and how much suffering Tripp has to go through - you are NEVER in it alone. From reading some of your blog comments, I can see there are lots of others out there like me who care so much about your family and Tripp and are sending positive thoughts and love to you every day. What I wouldn't give to be able to comfort Tripp and make his life a little easier. About the BMT thoughts...I know it is a hard decision and it would be a rough road for Tripp to go on. But it could make things so much better. If it wouldn't hurt Tripp, I would give anything to be there with you and just hug him and love him so much. Love from Cincinnati - Beth Franzosa (and family)

  13. Courtney,
    I know it is difficult to take time and blog when you are so busy, but all your readers who have come to love your precious baby and your family thank you for taking time out of your busy day. I pray for Tripp and hope the Doctors will be given the wisdom to diagnose and help Tripp. You and Randy will make the right decision when it it time. God is always on time even when we are not aware. God bless yall' and know that many people are praying.

  14. Courtney,
    I read your blog as well as Jonah, Daylon and Bella; the strength you show and love you have for Tripp is truly amazing. I pray for these kids and you as parents daily because it is all I can do for you. I hope the new med's are successful quickly. I'll add BMT guidance for you to my prayers; you'll make the right decision when the time comes. God Bless your precious family. Holly in ND

  15. Courtney:

    It's odd to be wishing for C-Diff, but I hope they can find out what is making him so uncomfortable. I have no idea what I would do about a BMT. There is no easy answer, but ultimately you will make the right choice for Tripp.

    I hope the weather there cools down soon- so you can take Tripp outside a little bit. I know he is upset anyway, but it would be good for you too.

    Many good wishes for Tripp! I hope to see some Muscle Man shots very soon.

    Best Wishes.


  16. Courtney,
    I have not seen you in years, but I want you to know that my heart and prayers go out to you and your family. You are a beautiful person and have a beautiful family...especially little Tripp. If you ever need anything, let me know.
    Love you,
    Courtney Mahler

  17. Praying for Tripp everyday.

    Just a thought... Have you had him tested for food allergies? Since he is on blended foods it could be a possibility. If he is allergic to something it might cause some of the same symptoms. That is, of course, if the c diff comes back negative.

  18. Tripp was on my mind this morning, so I came by for a visit, and I'm glad I am here to offer my prayers for the sweet baby, for his mom, and for his family. You all will be in my prayers, and I'm praying for healing and peace, and that Tripp feels better soon!

  19. Dear Courtney, first time commenter here. My name is Amy. I am from Tennessee. I have read Tripps blog for some time now but have just been convicted to write to you today.

    My family and I are praying SO SO SO hard for little Tripp! He is absolutely adorable and I wish I could take his pain away. I cannot wrap my mind around what you are going through, how much pain he is in and in turn, how much pain you and your family are in by just seeing him hurt. Thank you for blogging about him. He is an inspiration. Please always find the time to blog. We will pray and pray.
    Love , Amy