So last night after the very late CT-scan... ugh, we still had to come back to the room and bathe Tripp. From about midnight to 1 AM, mom, the doctors, and I discussed the use of a stronger pain medication to use. Nothing just seemed to be controlling this mystery pain he's having. The docs wanted to start him on a really low dose of Morphine. Well, you know me (kind-of).... I freaked out at the word "morphine." "No, I'm not ready to start that," I said. But the docs insisted that it's a low dose and it's something that he won't have to use all the time unless he needs it... and insisted that he must really be in pain if the codeine isn't helping. So I finally agreed. We gave it to him mid-bath (about 1:30am), and by the end of the bath- I had my baby back!!! He was smiling, dancing, playing, doing sign language, eating pudding, and being the sassy little spoiled rotten baby I used to have. Mom and I were in HEAVEN. Morphine was the best birthday present I could have ever asked for. Video to follow this post :)
Well, today... he woke up his same, hurting, miserable self (excpected). I surely didn't want to be giving him the Morphine around the clock, every 4 hours... but of course the docs again convinced me that if it made him feel THAT much better, then he probably needs it. So we gave it again today. It didn't work the same wonders today that it did last night... but helped a little- it mostly made him sleep. You could still tell that he was in pain. All of his tests so far came back normal, CT scan too... except the WBC... so they are still saying they think it's just a skin infection, though his sores don't look signifcantly worse. But at least we are doing tests and checking things off of the list. I want to have somewhat of a peace of mind when we go home- knowing we tested everything we could.
Dr. Rodriguez came today to check the end of his trach and his ears. Said the sore underneath his trach looked okay, just a little crusty (this dry weather). And his ears looked good... so that's another check off the list. The pediatric surgeon, Dr. Adolf, is supposed to come take a look at his g-tube site also while we are here to see if there is any way we can stop it from leaking.
So they are starting him on 2 oral antibiotics, treating his skin and making sure it will treat any unknown "tooth" issues he might have as well. They want to keep us for sure tonight and if he's okay talk about sending us home tomorrow, hoping that the antibiotics will help him to feel better. I'm just starting to think his "pain" is either from his butt and scrotum sores, or something dental. I don't know. I will update you again tomorrow... but you can also add me on facebook (button on the right of the screen) and I will try to give updates (it's a little easier and faster).
Thank you all so very much for the birthday wishes... I had a very good day and was in good spirits because of all your sweet messages, love, and support. I got to spend the day with my super DUPER mom and some special friends that came to visit, and a little birdie told me that some sweet friends sent me some flowers back home :) Can't wait to see them! One of the doctors this morning brought mom and I some vanilla lattes ( my favorite). And the nurses sang to me and brought me some goodies. So turning 65 25 wasn't so bad... haha.
But now... check out his "Morphine Muscles".... this is 3:00 in the morning!!
We couldn't go to sleep because we were so happy that he was feeling good. I don't like the word "Morpine" so I'm going to call it his "candy."
Love,
So nice to see him smiling and so happy! He has the cutest face and chubby cheeks ever, so sweet! Hope you get to go home soon.
ReplyDeleteI'm glad your baby smiled for you on your birthday, baby kisses are the best presents. You are amazing.
ReplyDeleteAwww-I wish I could have some Tripp kisses!! He's so cute!!!! Still praying for Tripp, you, and the family!
ReplyDelete(((HUGS))))
P.S. HAPPY BIRTHDAY!
ReplyDeleteThinking of you and your family. Praying for you guys, Tripp, and the Drs. Hoping you figure out what is going on. Sorry you are spending your birthday at the hospital but am glad you had some good laughs and people are being so kind. Take care...Thinking and praying! Thank you for keeping us posted...you guys are just a wonderful family!
ReplyDeleteOh yeah....HAPPY BIRTHDAY!
ReplyDeleteAww Courtney!! Love, love love the sweet videos! He's so darn cute leaning forward for more kisses. You can tell he was so glad to feel a bit better too!! Hope things clear up and regular meds can make him feel as good!!
ReplyDeleteHe is absolutely adorable!!! Saying prayers that he feels better very soon. Happy belated birthday to you.
ReplyDeleteHE IS SO STINKIN" CUTE!!!! I'm thrilled to see his smiling face! What a great birthday present! Hope your day was great! Happy birthday! love, Jenn
ReplyDeleteCourtney,
ReplyDeleteGlad you were able to enjoy your birthday even though it was spent at the hospital. The video's were great. Tripp is a beautiful and happy child inspite of everything he's going through. I loved the part when he wanted more pudding!!!
Happy Birthday. I'm glad he had a better day. I hope they can get him all well soon.
ReplyDeleteHappy birthday Courtney! The videos are adorable! if Ponchatoula and Houma were any closer, I'd bring Tripp more pudding myself :) hope he gets to feeling better soon!
ReplyDeleteLOVE. THAT. CHILD. So glad he was back to his little stinker of a self. I'm glad that made your day. Hoping and praying the antibiotics and "candy" will work and that you'll be seeing more of that little monkey. Give him a kiss from us... if he has any leftover... that was a lot of kissing. Wonderful!
ReplyDeleteCourtney,
ReplyDeleteOh my word those Tripp kissses just melt my heart! So glad that he was able to show off his tricks he is such a smart lil guy! Thank you so much for sharing your sweet Sweet Boy with us!
So glad that you had a Happy Birthday!
Love and Prayers
Heather
He seriously could not be any sweeter. Thank you for sharing him with all of us. He is such a joy. I loved seeing his personality in these videos.
ReplyDeletePraying that the antibiotics and the "candy" will help him get back to his old self and that you are home enjoying him very soon!
Love and Prayers,
The Boltes in PA
Happy Birthday, Courtney!!! You and your little guy are never far from our thoughts and prayers. Ty still prays for Baby Tripp every night, but now he says his name correctly...Baby Twipp was really cute, but it's cute to hear him say Tripp too! =) Hope you know how very special you and your family are to so many. Thank you for sharing your story...I check your blog daily. Take care! Sarah Griffin
ReplyDeleteThose videos were tear jerkers! If that can't make a Mommy proud nothing ever would. I hope you had a great birthday. You deserved it! I have kept you both in my prayers. I pray you find the source of the pain and he'll be quickly healed.
ReplyDeleteLoved the videos :) Tripp is such a smart baby!!
ReplyDeleteHappy birthday to you! May all your wishes come true! And Tripp's videos are priceless!
ReplyDeleteDear Courtney....I am visiting from Bella's blog. The videos are so wonderful. EB kids have a piece of my heart and I am praying for your adorable little boy. Hang in there Mama!
ReplyDeleteKim from California
LOVE the videos...and so glad he was happy (for a while) on your BD!!! I wish I had an ounce of your STRENGTH! Since he's giving so many kisses away...get one for me!!! LOVE YOU ALL!!!
ReplyDeleteHi Courtney, I've been following Tripp for a good while but don't really ever comment. I always love to see the videos you take. He is such a smart child! His personality comes right through the screen and makes me smile. And the joy in your voice brings tears to my eyes. I'm so glad you got to enjoy your baby on your birthday. You both have been through SO much and deserved that special time together.
ReplyDelete~Ashley
happy belated birthday, courtney! i'm glad the little man's candy helped him feel better for your birthday :)
ReplyDeletemy prayers continue for you and tripp, and i hope he gets some much-deserved relief soon.
-steph
What a sweet baby! I hope he continues to feel better and you get to see more of that adorable personality! His sign language, and all of his receptive language, too is great. =) What a smart little man!!
ReplyDeleteThanks for sharing the videos of Tripp! He just has the cutest spirit, and I love his fast dancing moves. What an angel!
ReplyDeleteI'm so glad the medicine made him feel better, at least for a little while. Praying you all get to go home soon and he feels better.
Oh my goodness, lol. I absolutely fell in love with your baby holding his head out for kisses! It made my eyes fill it was so sweet. =) What a darling boy!!
ReplyDeleteYou have the sweetest baby ever, Courtney ! He communicates so well, way better then my Moesha ! Blame mama for that lol ... I hope he feels better so very soon and you can go home
ReplyDeleteKisses for him !
here's to hoping tripp will soon be feeling better!
ReplyDeletei LOVE the videos, tripp's tricks are SO sweet!
love and hugs
you have a really smart baby!! :) and sweet too! hope he feels better. :) happy birthday!
ReplyDeleteHi Courtney....I don't know you or your husband, but I've been following your blog since April. I am from Luling, 26 years old, and have a 6 month old daughter. I feel like I know you and your family! My heart breaks when Tripp is not feeling well and I get so excited when he's feeling good! I love all the pictures and videos. You are an extremely strong woman and mother! You seem to be doing a fantastic job with keeping Tripp happy and healthy! I'm going to add you on Facebook :)
ReplyDeleteHi Courtney: Thank you so much for the videos of my favorite boy in the whold wide world. Great to see that smile again. Sure hope the "candy" continues to help his pain. The videos made me smile, thanks for that.
ReplyDeleteHope you had a good birthday.
Please give Tripp a giant hug and kiss for me. Love that boy so much. Love and Peace. Love Leah's Nana
Praying for you!!!
ReplyDeleteMichelle in KCMO
Oh my gosh, thank you for sharing those videos! I just let Jackson watch them and he was trying to jump through the screen and play with Tripp! I am going to video it and send it to you. It is so funny!!!
ReplyDeleteI am glad Tripp is feeling better even if it is the "candy" right now. It sounds like the docs are doing everything they can to figure out what is bothering the little guy. I hope you get some answers and get to go home soon.
Have you ever had a WBC done on him before? When Jackson was at the hospital when he was 10 days old he also had a super high WBC. Does anyone know if that is the norm with EB babies???
Hi courtney--wonderful to see the videos of Tripp back to his almost normal self with all the kissing and dancing. I have a thought, and I thought I'd just throw it out there. I don't even know if it would be possible with an EB baby. But....you said that you think he's hurting from his raw butt/scrotum area and I think I remember at one point you saying that he holds his urine for as long as he can because it must hurt him so much. Thought...would it be possible to use a catheter for awhile, just to give the area a chance to dry out with natural light and air? That way, he wouldn't constantly have urine and wetness there. You could leave him open during naps and still time maybe and put a diaper underneath to catch bowel movements? I don't know...possible do you think? Just brainstorming here.
ReplyDeleteTripp is absolutely precious!!! I am keeping you and Tripp in my prayers. I hope they figure out this mysterious infection and you can head home. You and your husband as well as the other EB families are an inspiration. I admire your strength, positive attitude. Many prayers from Washington DC.
ReplyDeleteOMG!I LOVE the videos!! He is so precious and very smart!!! We are praying for you and your family, keep your head up for your baby boy...I can't help but smile at his videos and how happy he seems! He would have a good time with my little man, they seem like they both would be trying to do whatever they could to make you smile!! :) I always look forward to your pictures and videos of him!!
ReplyDeleteHe's such a sweetheart! Lots of prayers your way.
ReplyDeleteHi Courtney,
ReplyDeleteYou don't know me - but I just love Tripp! He is such a darling boy. I used to work with sick and handicapped kids though not EB, and if you can stand medical suggestions from someone who has never clapped eyes on your child - it takes a lot of energy and strength to deal with bad pain, no matter what the cause is. Maybe Tripp just doesn't have enough energy for that right now, and even if he does, he could better use his energy for healing his raw areas. So if you keep him as pain free as possible, you are freeing up his energy to fight infection etc. Obviously you don't want him on morphine forever but using it as needed now could break a vicious circle.
I really hope for Tripp and you that they get things figured out, and I bet you never had a better birthday present!
Happy Birthday Courtney... Sorry I missed the last few posts. Been up in the air...literally, as I flew home from Italy and then off to Colorado for my newest grandbabys birth! I love, love seeing the videos of your precious boy and hearing the love in your voice! Hope things are looking up... Hugs!
ReplyDeleteHappy Birthday Courtney! So glad to hear your sweet little man has gotten some relief.
ReplyDeleteI must say that watching your videos made me lol and smile so big. He seriously is one of the cutest babies ever!
Courtney:
ReplyDeleteI am sp glad to hear about Tripp. As your readers said, it was truly nice to hear the joy in your voice when you were playing with Tripp. He has learned so much. I am sure the morphine choice was a hard one, but he must have been in pain (as you knew).
I am sorry your birthday had to be in the hospital, but it's great that his tests were all clear. It must bring some piece of mind during a very difficult time.
I hope the "candy" gives him a much needed break and some time to play and be a little boy. You both deserve the playtime :)
Best wishes for a great year ahead.
Beth
O My Lord!!! Those are the videos I was waiting for!! That boy sure is the sweetest thing EVER!! I love how cute you and your momma are with him. It warms my heart beyond measure. Hope he is still getting some relief even if it involves some of that candy. xoxoxo to all of you
ReplyDeleteHappy belated Bday Court - sorry u had to b in the hospital for it. Love this video of Tripp! Glad u got so much lovin from that lil angel!
ReplyDeleteHeavenly Father, we look to you for guidance in caring for your special angel. Please send down some suggestions. Please offer Tripp some comfort so his Mommy and Grammy can share in that as well. Amen
Such cute videos! You are such a great mom.
ReplyDeleteHi Courtney,
ReplyDeleteHappy birthday...a few days late. The videos of Tripp made my day. We are thinking of you over here in Ohio, and praying for some relief for his pain. What a beautiful little boy. That smile just makes me melt!
Hoping that things continue to improve in the next few days and that you are back home in no time.
Lots of love.
It is so amazing to see him smiling and laughing again. And oh how I have missed his muscles lol ! Still praying so hard for him.
ReplyDelete