I'm sorry it's been so long since my last post. Life has been a whirlwind and at the end of my day (around 2 am) the thought of sitting down and processing my thoughts so I can blog about life, is unappealing to be perfectly honest. For me, sometimes it's best to just plow right through and think about stuff later. Not the most grown up of tactics, but it works. :)
We saw Dr. Grant (GI specialist) last week to come up with a plan for Daylon's nutritional needs. Daylon's labs have improved some but his electrolytes need some serious improvement to keep Daylon alive. The doctors don't feel that another g-tube or PIC line are a good idea for Daylon. The trouble Daylon has had in the past with the g-tube was really concerning for Dr. Grant. Apparently, he even yelled at the surgeon while we were away in MN. I had no clue that he took it so personally, but I've got to say, I'm grateful he did. I know it will insure better care for Daylon in the future. What he ultimately decided was that he would give Daylon one month to put on weight on his own (since he's starting to eat) and in the meantime, he'll consult all of the doctors on Daylon's team and come up with a plan that everyone feels comfortable with. with have 3 weeks left, so I hope we start to see some improvement soon.
|This is his Easter outfit. He still can't go to church, so he wore it to Saturdays Easter dinner at Grandma and Papa DLC's house with the Fraze family|
Oh! I almost forgot! My parents, Brian and I were asked to speak at a fireside/church event for our ward/congregation about the miracles we've seen in Daylon's life. Brian spoke about the disease and life before transplant, my mom spoke about the fundraiser and walk-a-thon last May, I talked about the events in Minnesota to current time and my dad spoke on "Prayer". It was such an honor to be able to share with others how our life has been touched and influenced by prayer and the hand of God. I feel so blessed to have experienced this life and to have seen miracle after miracle first hand. Through the trials we have had, we have grown closer to God and closer as a family. I am a better wife, mother, daughter and sister for it.
I was interrupted when I wrote the above a couple of days ago and never posted it. I've decided just to add on from there. Anyway, we just found out today that Daylon will need to return to Minnesota as soon as the insurance approves it. The doctors up there are taking over Daylon's care just for a week or so (I think) to get things back on tract. He is having a g-tube put in again and the surgeon, GI and anesthesia have all been contacted. Minnesota is the best place for Daylon to have surgery for the following reasons: 1. so they can attempt to NOT intubate him, and 2. Dr. Saultzman has been the doctor to operate on Daylon repeatedly and has developed a stitch that last for a decent amount of time. For some reason, regardless of transplant, stitches still just slip right off Daylon while still in the OR. Dr. Tolar also wants Daylon's lungs and airways tested by their Pulmonary team to see where he's at with all that.
Oh, here's what Daylon looks like these days...
his skin is awesome but he looks like he belongs in some commercial about starving kids in Africa.
I will update again when we have official dates. Thanks so much for your love and support. I'm sorry to make you all wait.