We are still in the hospital. Our Children's Hospital can not figure Emily out, so we are being transferred today to the hospital where our neurologist and neurosurgeon are. We will be consulting with them, and getting a second opinion from their GI team.
Emily has been in and out since March 13th, with only 5 or 6 nights home in that time. I am exhausted.
Her GI tract is a mess. She can hardly keep her g-tube meds down, usually even that gets retched up. She is TPN dependant. Extreme diarrea. Retching, gagging, drooling. All GI tests are normal. Upper GI, small bowel follow-through, endoscopy, CT scan, ultrasounds, xrays. Everything.is.normal. How frustrating!
So we are sitting around today waiting on transport to transfer us to the other hospital. It's an hour to two hours away depending on traffic. Of course, now it's rush hour time so the drive will be horrible. I'm hoping that it will after rush hour time, although being admitted late at night sucks. Then we're heading into the weekend ... I imagine we will do a lot of nothing between now and Monday.
Please pray that the second hospital is able to get to the bottom of Emily's problems! My little girl needs a break, and we all need to get HOME!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
15 comments:
Sarah I am so sorry that things are so tough. Praying for answers for your sweet girl. Sending lots of hugs.
Praying for you! Sounds so similar to some of what we went through with Marie. Her GI tract just didn't move things through, and before the nissen she'd vomit uncontrollably. I pray they get to the bottom of it, you guys get home and she can get a break! Sending hugs! And thank you for your sweet words!
I hope the new hospital can figure everything out! So sorry you and Emily are having to go through all of this! I'll be thinking of you! Love, Hugs and Prayers!!!
Bless her heart, she's had a horrible time lately! I really hope and pray they can find out what's going on! How frustrating and exhausting!
I am so sorry to hear she is still in hospital. Am hoping and praying you get some answers at the new hospital.
I have no room to complain.....
UGHHH!!! I am so sorry!!! I feel for everything you are going through and the exhaustion is too much!
Praying.....
Hugs..Deb and Hudson
Oh my heart goes out to you guys. We will be praying for Some answers for her and for healing.
I am so sorry that things have been horrible and tough for you and little Emily. I will keep you and Emily in my thoughts! Hope they figure this out for Emily so that she doesn't suffer so much!
I just want to hug you. And be able to give you a break so you can get some rest. I've done a long hospital stay although not nearly as stressful as this sounds. My heart just aches for you. I wish I knew the right words to say to bring you comfort. Just know that you and Emily are at the top of my prayer list tonight - and every night - until things turn around for the better. My fingers are crossed that this transfer brings great changes for Emily. Until then, know you are in my thoughts every day.
xoxo,
Christy
So so sorry and sad for Emily and fam. Could it be a medication? Will you enail me privately? we want to send Emily something....
You're all in my thoughts xx
Oh dear. Please let me know where you are. I will try to come by and visit. Or you can have some respite at my house if you're near LA?
Has the coincidence of the vomiting starting the day after the VNS been addressed? I mean the irritation to the digestive tract and even throat can cause enough discomfort to start all this vomiting.
Turning off the machine for one day will do no harm and could be a way for eliminating it as the culprit.
Continuing prayers for Emily!
I'm so sorry, I will pray the other hospital will find you some answers. You have been through so much!
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