The last few days Owen and Kam have had tummy aches. Zero symptoms, aside from a sore tummy. Last night Owen's tummy looked really distended and rock hard. I took a picture of his bloated tummy and texted it to his transplant team. They said to come down this morning and we'd do a quick echo to rule out anything cardiac related.
As soon as they turned on the echo machine I knew. Then five minutes in, Dr J came in and took me out of the room. His heart is not well. He is having severe cardiac dysfunction. His heartrate is 158! How he declined so much from February until today has everyone puzzled. There was no sugarcoating how emergent the situation is.
Thankfully, the new Transplant cardiologist started this week. He has a close relationship with our team at Stanford and spent a while on a conference call with them. We are weighing the risks vs benefits of transfer.
We quickly admitted him to the CVICU and started him on IV Milrinone and steroids. He has fluid around his tummy and his liver is really enlarged. Stanford really felt it was best if we did the biopsy at PCH tomorrow morning so we know what we are treating. He will be the first case tomorrow morning. I am a nervous wreck about it... but trying to stay positive. If it were up to me, I'd be on a plane to LPCH yesterday, but he is not stable.
We are waiting on a billion labs to come back. We are monitoring renal function. We will closely watch his function tonight and pray that it's rejection that is reversible. We will know more tomorrow post biopsy whether we are treating antibody or cellular rejection.
I am running everything through our Transplant team at LPCH and our new cardio is on the ball here. Thankfully he is on this entire weekend in the CVICU. I'll post more when I know more!
Owen is feeling crappy so I'm going to give him some cuddles.
Thursday, April 9, 2015
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14 comments:
Praying for our boy!! Gosh, I love this kid like my own and have followed him for years. I know God will provide comfort and knowledge to your team to do the right things to get Owen over this. Hugs and love for all of you.
Stay strong. We are praying.
I have been following your blog and Super Owen's story for almost 5 years. I have prayed for your sweet boy and family and praised God for the miracles He's granted over the years. Praying for yet another miracle now!!
Love and prayers from SC....
Jennifer Scruggs
Thoughts are with the little man!!! Hoping everything turns out okay!
Praying for ya'll
I'm so sorry to hear this.
My first thought was has he really been swallowing his new oral meds?
My mom used to take them out and hide them :( and I now Mr. Owen used to pack food in his cheeks?
I am Praying for the swiftest of recoveries for him and for peace of mind for all of you.
Give him an extra cuddle for me.
Praying so very hard for Owen and your family. My heart goes out you.
Like so many others, I have followed your family's story for years and prayed for yall. More prayers coming to you all from TX. Love Jennifer S.
Praying!!!
Praying for Owen!
Prayers for Owen and everyone involved in his treatment.
Just came across your blog tonight and will be praying for your sweet boy!
I'm so sad to read this!! Mr O is tough though.... He will fight this!!! Love hugs and prayers being sent your way!!!❤️❤️❤️
I'm so sad to read this. Owen has overcome many obstacles and will do the same with this one. Best wishes to stay strong to the whole family.
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