Well I am happy to say that the Echo did not show any signs of infection!!! PHEW!!!!!!! They said they didn't get the best pictures, but from what they saw, they said it didn't show any signs of infection. In addition, the calculation they can do to check the efficiency of the heart looks better also. His exit echo from the PICU was 37% and yesterday's echo was 50%. They said that most adults are at 60%, so he looks good!!!!
ALSO, Caleb went down for another swallow study today. As most of you know, Caleb has had eating issues before he got sick from what we think is an oral adversion due to how many meds he has been on. In addition, he was getting so upset when anything was put in his mouth he would aspirate (cough and move the fluid to his lungs). Since he was extabated in the PICU he has been really wanting to put things in his mouth. So he went down for the swallow study today...AND he only aspirated on very thin fluids so they are going to allow me to try to feed him a bottle at least twice a day and try feeding him baby food twice a day too. So exciting!!! Now. . . we also know with CHARGE Syndrome that some children have texture adversions with feeding too...so we will have to wait and see how he does over time.
ALSO, Dr. Markert came in today and was ecstatic with how Caleb looked and acted. Her words exactly 'He's back'. She said she was really scared with how sick he was how and if he would recover. She did say that a Thymus Transplant can happen a month after the heart surgery (we are two weeks post heart surgery today) granted they have a Thymus. She said she is going to look very hard for a Thymus!!!
So we are very excited. But again we don't let our highs get too high and our lows too low here.
I will let everyone know how the feeds go tomorrow!!!!
OH and Brian will be here in two days and Pap Pap Bernie will be here in three!!! YEAH!!
God Bless Everyone!
God Bless Caleb!!
10 comments:
YAY YAY YAY! All good news.
And about the swallowing, I know you already know this...but thicker foods (ie baby foods) will be MUCH easier than the bottle. Have they given you any of the thickener (I forget the name) but you can add that to make it easier to swallow too.
Take care...thanks for keeping us posted! You are doing amazing. I know every day is so challenging but you are beating the odds and that is because you two make a wonderful, inspiring team!!!
Love, Amy and Max
Oh Sarah...I am SOOOO glad to hear all that great news! I can only imagine how amazing it will feel tomorrow to get to feed your son again. I hope it goes well!!
I love that Dr. M said "he's back"! I wish I could see him for myself!!
I love you guys...all of you...and am SO happy to hear some great news!!
Keep up the good fight Bubber...you have no idea how many people are praying and pulling for you. You have more friends in this country/world than I can even fathom. You are one lucky lil man!!!!
God Bless & LOTSA Love,
Aunt Jess
Oh how wonderful. My smile just got bigger and bigger with each paragraph so I can only imagine what your beautiful smile must look like. I know you have to be cautious, but oh how wonderful to rejoice!! Especially during this really special week! I am so grateful for this wonderful news and I look forward to more!! What an amazing boy you are raising! God Bless you all and kisses to Bubber! Almost the big day!! Love you!!
Love-
Aunt Jen, Uncle Andy, and Haleigh
Caleb and Family,
It's great to hear that you are doing so much better.
I just wanted to let you know that I am still keeping up with everything that has been going on and think about each of you when I go into "your room" 49.
Michele, Chelsea, and I are all working tonight and all say hi!
We miss you!
Keep up the good work :)
love,
Amanda G
That is the best news! Go Caleb!
Hugs,
Sarah, Jeremy, and Evan
Such wonderful news!!! I'll be anxious to hear how today goes!! God Bless all of you!!
Much love-
Chris XOXO
OH I AM SO HAPPY!!!!! I have tears in my eyes I am so happy!!
I know he will do a great job with the eatting he is such a strong a wonderful boy.
We all love him here in Illinois and Wisconsin and I can't wait to tell people how great he is doing.
It's so funny you would think he was my child the way people ask for updates. :)
Hugs,
Crystal and Eva
Just wanted to send early Birthday greetings to Caleb. Take care and hope your birthday is the greatest!!
Lisa Ellington from Rockingham County
Hey Sarah -
I am sooooo happy for Caleb and for you! A real bottle - so what if there is thickener...that is awesome! I am so thrilled for you all...and if you need to order the simply thick when you get home, I have all of the contact info as we needed to order it...I gave my supply to Maria, but I am sure that she is busy using it...
Anyway, I am so glad his heart looks good...PJ's does too as of cardiology yesterday...God and his angels are very much watching over our strong baby boys!
Love - Jenna Ramsey, (Parker and PJ too!)
What incredibly awesome news!!
We are so happy for you guys. Now you can focus on his 1st birthday, which is so exciting!! Hope all goes well with the feeding and we'll check in soon.
Love, prayers, and REJOICES!!!
Bobby and Becky D.
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