Sorry all for the delay. We have been busy moving rooms, as wonderful Aunt Jen said in the comments section (she is so sweet to us). Caleb ended up having his G-tube put in as well as a Nissan wrap (wrapped his stomach to prevent severe reflux), repair of his broviac tube (his central IV tube that split the morning of the surgery), and to remove his gall bladder (as it was causing problems since he was initially in the PICU). He is still healing from that surgery and that was about two weeks ago. His G-tube is still leaking, YUCK!!! But, we are trying to keep it clean and infection free. He is now up to 18 mls an hour on feeds, I think the goal is 48 mls. They are only increasing it 2 mls a day, if all is okay, to not overwhelm his GI tract.
Well, on to the Thymus. Once again we were VERY close to a Thymus. We thought number 8 was it. Caleb was even in the PICU getting his first of three ATG infusions (the infusion they get pre-transplant to prevent their body from rejecting the Thymus). He was actually scheduled for transplant for this Friday. Brian was here also and was planning on staying through Sunday. However, one of the last tests was on the virge of passing and the docs decided that night that they weren't comfortable with the results. The transplant was cancelled on Sunday night. Brian had to fly back early to get back to work, so he can come back when they find a healthier Thymus. Needless to say, we were definitely upset, but didn't want to take that risk. We were close again, but we are praying for a healthy Thymus to come soon. We are back out on the floor waiting for a Thymus. We are screening Thymus 10 with a possible 11 and 12 later this week. Crazy huh?!?! Emotionally we are better, just nervous as the wait for a Thymus keeps get longer and longer.
Well on a wonderful side note, Caleb rolled over onto his tummy yesterday for the first time ever, despite having the G-tube. Of course, there has been some developmental delay due to being in a hospital for about 12 months, but Caleb continues to strive developmentally. THe PT and OT therapists are so happy with thes progress that he has made despite all his surgeries he has had here. He is such a sweetheart and an amazing little boy.
Again all, sorry for the delay it has been very busy with the moving back and forth to the PICU for different surgeries and then to have the last upset regarding the Thymus. They will find him one.
Please continue to keep Caleb in your prayers and pray they find him a Thymus!! We love and miss you all!!
God Bless Caleb!!
10 comments:
Oh Sades, I am so sorry this wasn't the one...but it will be soon!! It just has to be.
I am so excited that your amazing little boy keeps "showing them!!". He is so special and I so look forward to the day when I can once again hug him and kiss him all over his beautiful head!!! I can't wait to give his Mommy a much overdue big hug too!!
Thank you so much for the update. I am glad that you at least got a quick visit with Brian and that he was able to get back in time to not have to use up any time away from work.
We love you all so much and miss you. We will keep praying that they find a healthy thymus very soon. God Bless Caleb and God Bless you all. We love you so much!!! We miss you like crazy!! Kisses to Bubber and hugs to all of you!!
Love-
Aunt Jen, Uncle Andy & Haleigh
Sarah,
We have been thinking of you guys and are glad no news really was good news (Crystal's words). Rolling over on his tummy is a big deal--yeah Caleb! Evan hated being on his tummy. He was really good at rolling off his tummy, onto his back.
So glad to hear about little Caleb but it sounds like you have been very busy indeed. At least it's been with productive things!
That's so wonderful about Caleb turning over. It's amazing given he's been living in the hospital. There's NO chance of TAte turning onto his tummy he hates it and is like one of those bugs that squirm till you turn them back over:).
I have all the confidence that the right Thymus is out there for Caleb and that one was not it. We're still here praying that it comes sooner than later.
Love from the Youngs,
Mike, Corrie, Peyton, Cy, Mary Catherine and Tate
Way to go Caleb!!! I hope you'll be able to take video of him soon...I love to watch his smile and hear his laugh!
I know this has got to be a heart wrenching roller coaster to live on, but you're doing it and you're keeping your family together. You are an amazing wife, mother, daughter, friend and woman. Don't forget that.
I love you and I am praying for you and your whole family every day.
God Bless & Lotsa Love,
Jess
Sweet Sarah - I was so hoping this was the one....but I know it's coming - I just feel it!!! I know you know how much we all are praying for that and for some peace for all of you. Hearing that Caleb turned over is such joy - can not imagine what a thrill for you and your family!! What joy you bring to all of us with every chance you get to post. Hang in there Sweetie!!!
Much love-
Chris XOXO
We have been checking everyday fir an update and I am so sorry about everything you have been going threw. I hope one of these Thymus' is the one. Its starting to get crazy for you having to wait and go threw everything just for them to tell you nope sorry not going to work.
I will continue you have you in our thoughts and prayers.
Hugs,
Crystal and Eva
we just know that the right thymus will find your little guy soon and that he will heal beautifully and go home as soon as it is safe...you are right, he is an amazing boy and he continues to prove it(yea caleb rolling over!!! go caleb go!!!) we will keep praying...
christie and fam
Hi Sarah,
Your post was mixed with good and bad news, I'm not sure what to comment on first--I guess I'll start with the YEAH for Caleb's roll. I bet he was so proud of himself!!! I can't imagine what disappointment you feel about the transplant, but I know God will find one soon. Better to be absolutely perfect, than take any risks..he has come so very far...how amazing you all are! I wish I knew what to say to show you how incredible a mother you are to little Caleb. There is no way he could have come this far without you!!...Know that we are praying for you guys and sending bunches of love!!
Becky and Bobby D
LET'S GO MOUNTAINEERS!!! In just a few years we will be making the trip with our kids down to Mo-Town to watch the 'Eers play some football!!! We love you and miss you!!!!! God Bless!!!!! I hope Caleb is still feeling well!! Kisses to Bubber!!!!!
Love-
Aunt Jen, Uncle Andy, Haleigh
Hey Sarah -
We were right next to you on 5100 earlier this week - saw your mom but understood, with PJ being sick and all! Anyway - I am so sorry that this wasn't the one, but I know that the team is working oh so hard to find Caleb his magic organ. I will continue to be thinking about you! Can't wait to hear about more of his milestones- eventually walking right out of Duke, hopping in your car, and back to WV!
Jenna Ramsey
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