Day of Life #319

So Shortly after the post about taking a break we were back in the hospital.. .

Madeline's doctor called last Thursday and said we needed to bring her in to the ER because her sodium levels were getting out of whack again, she was already sleeping so we took her in Friday morning, she spent the day there for the most part until they got a room ready for her on the floor. She got fluids over the weekend, and on Monday they did an endoscopy from both ends on her to check out the GI track to see if they could explain the puking, they also tried to place her G/J-tube during that procedure but failed. They sent her to interventional radiology on Tuesday to try again, they got it, but the balloon failed on that device and the whole thing came out that evening. Wednesday they put it back in after many delays, it's in now, but she has been pretty crabby ever since. She hasn't had anything to eat/drink by mouth since Monday 12am, so maybe that's why, or maybe the tube is bothering her some, or maybe she just feels sick, she continues to gag and puke up stomach contents even though all her food is going directly into her intestines. I pulled the resident over today when I got here because Maddie had been crying, gagging, and looking pretty sickly. I asked the resident about her current care plan and basically came away with an answer that says basically, we don't know why she's puking, anatomically there is nothing wrong with her, as long as she gets the nutrition she needs through her intestines and grows, that is all we can do for her until she outgrows the puking.

Needless to say this trip to the hospital hasn't gone as planned, and we've learned that we're just going to have to work around her puking. The trend of being in and out of the hospital is more of a fact of life now, that is just how it is going to be for now. We hope that this G/J-tube will get her the nutrition that she needs and we can come up with a formula that will keep her well hydrated and out of the hospital for longer periods of time. The G/J-tube still has to be replaced every 3-6 months, and that means having to undergo a procedure with anesthetic every few months, trips to the hospital etc, etc. Rachael and I have both dealt with some stress this go-around, it is hard to describe the moment that you realize there is no answer, that you are at the limit of our modern science. You spend all this time searching for answers, appointments, diagnostics, consults, etc, and then there is that moment when you look in the doctor's eyes and it clicks, we can't solve this....