Wednesday, January 5, 2011

a little bit of everything.

We have been enjoying Nanny and Uncle Mike since Wednesday and I was so sad to say goodbye today.  I really loved having them here and really loved the extra help.  I wouldn't let Nanny spoil me too much, though, since I don't know when she's going to come back!!  Also, she and Mike had a list of places they wanted to eat while they were here (that they don't have in North Dakota:), so I gained a good 5 pounds from take-out.  

I knew I missed my sister a lot, but didn't realize just HOW much until she came and left again.  It was so nice having her here and being able to just catch up and hang out.  Man, it's great to have such a close family, but it sure hurts to be so far away from one of them.  Thank goodness she has such a good hubby that takes care of her, so we know she's in good hands up there in North Dakota:)  I love you both very much and will miss you until you come back!!

Today is the fifth day of Tripp's "#1" Fundraiser.  Thank you to everyone who has already made a purchase.   If you didn't read the post about his fundraiser, you can shop here-  and 15% of all proceeds will go to Tripp.  The directions to follow are listed in the post below.  The fundraiser will end on 1/1/11.  Go check out the super cute items that Debby has for sale, while also supporting our little man:)

Brace yourself for this.... two of Tripp's doctors made house calls today!  Dr. Defusco (pediatrician) and Dr. Rodriguez (ENT) both drove to the house today from New Orleans.  I KNOW, right?!  Isn't that just amazing?  We sure were lucky with the doctors we chose for Tripp.  I seriously don't think I coul have found better doctors.  I needed to take him to see both but he literally will not even let us sit him up on the rocking chair- so I knew putting him in a car seat, driving a hour, then getting him out into the hospital would be close to impossible.  Both doctors offered to come without me mentioning it.  

For the past week, he has probably actually played for about an average of 15 minutes a day- and that was only right after his baths.  He will open his eyes laying on the rocker while we sing to him 24/7, but won't let us sit him upright.  About a week ago, he had spells where he could barely breathe at all without wheezing.  I didn't know if it was the sore in his airway acting up or if he just had a cold with increased secretions.  Either way, his breathing sounds a lot better now because I went up on a very high dose of steroids and and was giving breathing treatments around the clock.  So since then, he's been laying in the rocker and shakes his head "no" every time you ask him if he wants to sit up.  I know it could be a lot of things causing him to hurt so bad... but I just didn't even know where to begin. 

Dr. Defusco did a full check-up.  Listened to him, checked his ears, wounds, and everything (as much as he would allow:)  She could only get to one ear and said the other one looked like it was draining a good bit and that might be what's hurting him- but it had too much drainage to see in it.  So Dr. Rodriguez came with her ear suction, and her scope to look down his trach.  She said that the ear has fluid, but it's not really infected, and that both of his tubes are still in place.  She also said that below the trach (inside) there wasn't a big sore, but the whole airway just looked inflammed and irritated.  And being on the high steroids already, I'm thinking how it looks now is it looking a little better than last week.  

So between these two SUPER fabulous doctors, I think Tripp is going to be okay and I know that he is in SUCH good hands.  God blessed us with such caring and considerate doctors.  We are also going to work on getting his pain under control.  Dr. Defusco said that she wants to start him on Hospice- JUST so they can manage his pain better.  I think if we can get his pain under control that he may be able to have a better quality of life.  Because right now, 10 minutes of playtime a day just isn't cutting it.  I feel horrible that he sits in the same spot all day, every day.  But he just doesn't want to move.  

Anyway, today I am obviously grateful for Tripp's healthcare team.  Not only are there the two amazing doctors who came to see him today, but there are many other healthcare professionals that he sees that go above and beyond to make Tripp's life and my life a little easier.  And I am WELL aware that doctors or just people in general do not HAVE to be so accomdating, that's what makes me appreciate it even more.  Knowing that no one even asked them to come, or knowing that they didn't have to make the trip out here, means so much.  

This whole situation could be so much worse, but I am surrounded by so many amazing people.  Somehow, it makes it a little bit easier... knowing that I'm not in this alone.  I hope we spend many more years loving Tripp and watching him grow up together. 



  1. Oh girl - my heart just breaks for him! Hopefully some pain meds will help him get back to playing.

    <3 J

  2. You really do have an amazing team of health care professionals to take care of your sweet Tripp! He sure is a handsome little man:) Many thoughts and prayers coming your way--I hope you can get his pain under control so you both can enjoy some playtime soon!

    Vicki in NY

  3. I can't wait until the day I do finally meet (for real) Tripp in his big castle in the sky built of gold as smooth and clear as glass and with precious stones, full of joy and happiness. No thoughts or memories of pain or sadness. His reward is great and you have changed so much and become so much closer to the Lord. What a blessing your son is!

  4. There is nothing like a doctor that will go over and beyond, and Tripp deserves that!

  5. i keep you all in my prayers all the time. I wish i could "magic" the whole thing away for you. You have a wonderfull healthcare team I am so glad for all of you. I am so glad Hospice is going to work with you for pain control --- that is one of the greatest things they do. Most of the time they really know what they are doing. I can't wait to hear that it has helped him tremendously (sp??)

  6. It is so wonderful that you have accomodating doctors and couldn't think of a more deserving boy/mommmy. Hoping 2011 brings Mr. Tripp some relief. Love from Md, Stephanie

  7. such a sweet sweet baby. continuing to pray for y'all.

  8. Praying you you and sweet Tripp. I hope he will feel better soon! You are a mom rock star. I would seriously stand up and clap and scream for you for an hour. You inspire me and so many.

  9. Gosh, it just breaks my heart to see such a precious little guy in such bad shape. I am lifting you both up in prayer and I hope he finds comfort with the medication soon. I really cannot imagine the heartache you must feel knowing he is in pain. I know when my son had his appendix out, seeing him in pain after the surgery had my heart ripping apart, and he was better within a few days...I can't even begin to imagine it every. single. day. You are so strong (even though you may not think you are), and so is he. God bless you both (and his daddy, too!)

  10. Hospice can sound intimidating, but they really do 'get' palliative care SO MUCH BETTER than the other teams. Even in the hospital on 5D (the regular transplant unit) you wouldn't believe how puritan the entire staff is about pain management. Here you have this population of kids who they are essentially poisoning to the brink of death, and docs who are reluctant to just give the dose of relief the child needs to feel comfortable. You have some angelic docs down there. It sounds like a bittersweet scenario with your sis leaving... so great to have 'em, so sad to see 'em go! Much, much, MUCH love and admiration streaming your way tonight. Tim

  11. I am so happy that you are going to call hospice. Tripp needs to feel better and if that is only way to up his pain meds go for it. I love to read how you and Tripp are doing. Praying for you. I love the photos of your little angel. I hope hospice/palliative care comes ASAP so we can see Tripp smile and him up and playing again. God Bless you.

  12. So glad that you had a great visit from your sister but sorry that you had to say Good-bye.
    I am so sorry that Tripp is still feeling so yucky. Praying that he starts to feel better and soon.
    You guys are in my prayers every single day. Love you guys. Keep the Faith. Lots of Love and hugs. Leah's Nana

  13. Wow...wonderful doctors! I am sure they love your little guy too! Hospice will be so wonderful too, having that support right there at home for you and Tripp. Happy New Year Courtney, I praying for some happy days for little Tripp~ he needs them just to play with all his fabulous toys, right?

  14. These pix are so amazing, wonderful to see him awake enjoying his toys and family!

    Also SO good to know hospice will be taking care of "y'all"! They do wonderful work and I hope they will make it possible for Tripp to enjoy more and more awake/play time. If there is a way for us to do anything to help just post it on the ole blog!!

  15. Storming Heaven for Tripp!!! I am just so sorry and I have no words, I will just continue to PRAY like crazy!!!! I do want you to know that I thought of you and Tripp constantly while in EE and your strength and perseverance kept me strong during the scariest of times. I Thank GOD for both of you everyday!!!!

  16. tripp is a BEAUTIFUL baby boy and i love to read about your journey with him!! what an honor God picked you to be his mama!! it is also an inspiration to read about your growing faith. you are doing great things for His Kingdom!!

  17. What great doctors! I can only imagine what the relief you felt when they both offered to come to you. I bet if Tripp could tell them he'd be very appreciative too. I look forward to seeing pictures and videos of Tripp playing and getting back to riding in his little car when he's feeling up to it! Feel better soon little buddy!


  18. What AMAZING doctors you have!! That is so wonderful and it's neat how much they care about Tripp. We're still praying for him - my kiddos ask about him all the time and want to know how he's doing. Praying that he will feel better soon - so you can post some great videos of him playing and being silly!

    Love from TX,

  19. Sending Tripp many hugs and kisses, and praying for all to get back to being himself again. Your little guy is loved so much!

  20. Dear Courtney,
    Sorry "the little knight" is still having such a tough time. It was so touching to hear that Tripp's Dr.'s came to the house to check on him.
    Glad your sister was able to come for another visit. I know how much you love and miss her.
    Thanks as always for taking the time to keep us posted on how ya'll are doing.
    Praying hospice will help control his pain so he start to play a couple of hrs. each day instead of just a few minutes.