That's how we have been lately. In the hospital, out of the hospital. In the hospital, out of the hospital. Three weeks ago it was two trips in a row for seizures. Then on the 24th it was in for feeding intolerance, retching, pain. That stay lasted 12 days and we were finally discharged, but TPN dependant. Her g-tube was switched to a gj-tube, and she doesn't tolerate j-feeds any better than she does g-tube feeds. An endoscopy showed significant irritation in the esophagus, but nothing serious. An Upper GI showed that her fundo is intact, although a little loose. She had a PICC line placed (twice, since she pulled the first one out). We came home Friday on TPN 24/7. By Monday morning she was retching, gagging, crying again. Luckily we had a pediatrician's appointment already scheduled, and she sent us straight to the ER. They ran labs, bolused extra fluids in, and diagnosed a UTI. The GI said we should go home with zofran and antibiotics, and we were on our way. This morning she retched just as badly. I called the GI first thing this morning, because he told the ER he would see us today. Now it's 11:30 and they still haven't called back to tell me when we'll be seen today.
She is going in tomorrow at the other hospital for her VNS placement. I have explained all that is going on, and everyone is okay with her proceeding with the surgery.
Please pray she does well with the VNS placement, and that we really get to go home after like they say we should. Please also pray that someone can get to the bottom of her GI problems. Her gut is shut down for whatever reason. It's a mess.
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.
9 comments:
So sorry to hear she has been having such a rough time. Will definitely be praying for tomorrow's surgery.
I am just so, so sorry. I know you must be so exhausted. All that worrying and working to get her better will wear you out fast. I am just so sorry that things aren't better for her and for you. My heart aches for you. I hope everything goes well for the VNS placement and that things turn around GI-wise soon.
Many thoughts and hugs are being sent your way.
~Christy
My prayers are for a good recovery from tomorrow's surgery and for quick improvement on all the GI issues. Sending you good wishes and a hug!
Prayers for you and sweet Emily! I hope they find some answers for you soon, SOON soon. Also, happy surgery, here's to a successful one and a speed recovery. So glad this is finally happening for you! Hang in there mama, we are here for you guys!
I'm SO sorry. :( You guys are in my prayers. I hope the surgery goes well and they can figure something out. I was TPN and I HATED it, so hopefully she can off it soon. Thinking of you guys!!
Hi Sara,
This is your old neighbor from across Marken lane. I was just talking to Beth B. and she told me about Emily. I am so sorry to hear about all that is going on. If you should need any help please feel free to ask! I will be praying for your family.
Anna Briones :) <3
I'm so behind. I do hope that all went well with the VNS. Prayers and good wishes your way!
I'm catching up on my favorite blogs an am so sad to hear all of this has been going on. The Baby spent so much of her early infancy retching like this...it was awful Stopped when we took her huge adenoids out. She would desat terribly, etc. How did the surgery go? Please keep us updated. You are in our prayers.
I will definitely keep Emily in my thoughts. I hope the VNS helps!
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