We got to our room about 10:30 this morning and things were a bit slow to get rolling. We, once again, lost Xander's iv line. Errr... but for now he is doing okay without it so they don't want to put it in. (It was a line that they used for blood work this morning, that they heplocked in case they needed it later, instead of re-sticking him.)
The diarrhea continued and then the vomiting came. His bottom is raw again and we have a special concoction from the wound care team here at DuPont that seems to help more than anything we have ever tried.
About 7:30 the attending came in and we spoke at length. He was fabulous and explained things thoroughly without making us seem like morons. We asked if he had been positive when we were in Richmond. He believes that the soonest the cdiff started was the day he vomited whole food at 4am on Wednesday.
He told us that this hospital has a newer test that they have been running since August and that the other lab test may not have picked it up, without doing anything really wrong. We are blessed to be at a cutting edge hospital.
Our doctor also is part of the infectious diseases team here so he really knows his cdiff. (A blessing from the Lord!) For now, we are treating Cdiff. He vomited tonight, but the flagyl had been down long enough to "count." He will get the flagyl four times a day (every six hours.) As the cdiff clears we will look at his symptoms and go from there.
Brandon leaves for Richmond at 1 am to go to work. :( But he is returning Sunday night. This weekend will be easy foods, antibiotics and watching for dehydration.
His partner takes his cases on Sunday night and he says she is just fabulous. I feel better informed and less stressed and overwhelmed. I also got a few hours of sleep. We've cried many tears of relief.
I nearly lost it when the doctor told us that this could have killed our Xander if it was left untreated. Thank the Lord that I ask every morning for Him to guide me and give me insights. I firmly believe that He placed a huge knot in my tummy when we left the hospital on Thursday night. I felt a wild panic unlike anything I have ever felt before and just knew that I had to do everything in my power to have someone treat him.
I'm so thankful that Brandon and I have the kind of relationship that I can say, "This is my gut feeling.." and he is willing to listen. But make no mistake, Brandon wasn't skipping out of the hospital in Richmond. I'm just a little less patient when I think things aren't going right. Some call that a fault, but in this case, it was a gift-- a gift that may have changed our course and made it where I can watch Xander grow into a strong man. Thank you, Jesus!
Monday genetics will come visit. They will try to piece together his birthmarks and some of the other odd things that we have noticed. Maybe this can all be tied together with an explanation from genetics. The thought of that is a little scary, I admit, but I know that God has always been by my side, even when I wasn't open to His direction and He will continue to walk with us. His love for Xander is so evident when we look at Xander's life and I know that He isn't leaving us on Sunday night to go into that genetics consult alone. I can't borrow trouble at this point, we have enough going on already.
Several of you have asked about the other three children. They are in Augusta, Georgia with my aunt and are pleased as punch to get to spend time with her. Julianne and Lainey (and mommy too) have been rallying for Auntie Karon to move to Virginia with us. This is the second best thing. I spoke with them tonight and while it was very hard on me, it made it a bit easier to hear the laughter and happiness in their voices. They are doing fine and really just want Xander to feel better.
We thank you for your prayers and words of encouragement. Several of you have sent me verses and that has been amazing for the moments that I start to doubt. I can never repay each of you for your faithful thoughts and prayers.
I'm off to snuggle with Brandon before he heads back to Virginia.
~Stephanie
3 comments:
We are praising God that you all have made it to a hospital that knows what is going on and can really do something! The difference between a regular hospital and a pediactric hospital can make all the difference in the world. Is there a Ronald McDonald house near the hospital? If so, the nurses will know. That can be a life saver if you have a long stay for your abilty to get some sleep, the budget, and a support system. We spent many months in Ronald McDonald houses around CHOP and DC Children's hospital. Until Xander is more stable I'm sure you don't want to leave his side, but once he is ok enough to allow you some sleep, a bed is so much better than those hospital sleeper-chairs :) We will continue to pray that God will lead you to the right doctors and that He will give them the wisdom and insight to recognize and treat Xander. We will also lift you, Brandon, and the children up in addition to Xander. It was always difficult for me when Brooks had to return to Richmond to work. I don't think I ever made that transition without tears. We made it through because we knew that was where we needed to be and from your comments it seems you all are exactly where you need to be too.
Please let us know if there is anything we can do.
Love in Christ,
Lesley Brendle
I'm so sorry your going thru this. You all will be in my prayers!
Blessings,
Maudie (maudie81, Momys)
Wow, wow, wow. I just read your last three blog posts. Unbelievable. I'm so glad the Lord brought you to the new hospital.
Huge ((((((HUGS))))))))))..and many prayers!!
~andee
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