So Evelyn got a GJ tube last January and did great. Except it didn't seem to want to stay in for some reason. In 2 months she's had 3. Each placement has been difficult and taken over an hour and up to do. She has weird "anatomy" that makes getting it in hard. After each placement her stomach and intestines shut down for a day or so and then she comes back. This time she didn't.
Last Friday (March 25th) it came out again and we took her in to get it placed. It was by far the hardest. She began vomiting almost instantly. Her entire gut shut down and she was putting out just 1000's of ml's of bile from her stomach and not tolerating any feeds. She just kept vomiting. We were able to do pedialyte through her J 24/7 and lasted until Sunday night when I just couldn't keep up with fluids anymore. She began having diarrhea and her belly was huge and hard so I knew it was time. I thought maybe some IV fluids and that would be it.
However after we got to the ER and they did the xray they said she had a complete bowel obstruction called a pseudo obstruction. It is basically the same as a bowel obstruction except there is nothing physically blocking the intestines. Everything just gets to a certain point and just stops. It's a problem with the muscles and nerves. Her small bowels were extremely dilated and weren't contracting at all and all her gut was filled with tons of air so they admitted her. Figured it would be a day or so.
Well here we are 9 days later and still in the hospital. It took about 7 to get her back on feedings and she is pretty much back on them. She continued to drain out lots of bile and needed regular IV fluid and potassium IV fluid. Because of how poorly her stomach was doing they also inserted a PICC line which like an IV line but goes into her arm and into a large vessel leading to her heart. She can then get TPN (IV nutrition through that). That was on Thursday and went well.
Tomorrow morning she will have a seperate J placed. There are numerous complications with the surgery and honestly I'm terrified. I am not sure how many times I can hand my child over to a surgeon. But we have no other options. The GJ will continue to come out every 2-3 weeks and we'll be in the hospital constantly.
Learning to care for the PICC line at home terrifies me as does having a major abdominal surgery. But I know God is giving us this chance for a reason. I have complete faith that this is the direction he wants us to go in. And it will make life better for us. The PICC will come out in several months and we will go back to life
But I won't lie. This hospital stay, surgery, and PICC is the hardest thing we've ever done. I'm exhausted. I haven't seen my babies in 8 days and missed Joey learn to walk. We are at the hospital non stop. We've both missed work. Treking the kids from sitter to sitter is hard.
Thankfully we've had wonderful people who have helped make this journey easier. Her teacher has come to stay with her so we can get a break. She's called her. Church friends have brought meals and did childcare. Babysitters have watched the kids for free. Family has taken the other kids for days at a time and figured out transportation. Other friends have brought gifts and cleaned our house and bathed our children without us asking. Others have sat with Evelyn so we could nap or catch up on housework. Without them, we couldn't do it. We couldn't have survived this. I will forever be grateful for those people in our lives who helped us. I hope someday we can pay it forward!!
We will update tomorrow when we can.
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