Back in the hospital

At 12:30 p.m. last Thursday, Steve made an appointment to bring Emmett into UCLA Mattel’s urgent care. We were there by 1:30 p.m. and admitted into the ER by 2 p.m.

Emmett hadn’t slept at all the night before and started to spit up whenever we fed him. He also started to get frequent episodes where he stopped breathing for 15-45 seconds. Once we saw that his stomach was getting distended, we decided it was time to take him in.

You’d think with our past experiences I’d be a pro at remembering what to bring to urgent care. But of course I forgot everything – phone charger, toiletries, clothes. (Which meant buying another $25 phone charger at the closest office supply store or gift shop.) Good thing we live nearby and can make a trip home once the initial ER/settling in activities are done.

We were admitted that Thursday night into the hospital for an ileus. Emmett has a history of getting ileuses, which is basically “the medical term for lack of movement somewhere in the intestines that leads to a buildup and potential blockage of food material. An ileus can lead to an intestinal obstruction. This means no food material, gas, or liquids can get through.” (http://www.healthline.com/health/ileus#Overview1)  Emmett’s predisposition to getting an ileus is most likely tied to his neurological condition, but unfortunately, it’s hard to predict or prevent since they can’t pinpoint exactly what causes it.

The treatment for ileuses is giving his bowels some rest by putting him on IV fluids. He was also put on a nasal cannula (oxygen given through his nose) to help his episodes of low oxygen saturation. Since we’ve been here, he’s gotten two different IVs (the first one blew), four rounds of blood tests, urine tests, a CT scan, four x-rays, three enemas, an unsuccessful attempt at an NG tube decompression and an EKG. They tried to “vent” him by leaving his g-tube open and allowing air and liquid to flow out from his stomach, and when that didn’t work, replaced his g-tube with a tube that could be used to actively suction whatever is in his belly out. He does not seem to be enjoying this.

One big thing both Steve and I have learned about being admitted to the hospital is making sure to understand what is happening and to ask questions. Is this test really needed? What will be done differently given the results? Are there any possible causes that haven’t been discussed? What other treatment options are there for this particular symptom? What risks are there? Side effects? We usually end up agreeing to the doctors’ recommendations but are learning the right questions to ask for our peace of mind and to make sure the right balance is being struck for Emmett’s comfort.

Four days later, and his intestines still seem pretty dilated. He’s also spiked a couple of low-grade fevers and seems to be in pain or discomfort all the time (except when he’s sleeping), and the usual treatments aren’t working. We’re eager to talk to the gastrointestinal specialists today so we can come up with a different treatment plan.

Even though we have all the necessities here in the hospital, I’m already over it and am so ready to go home where we can hold Emmett without all the tubes coming out of him. People have been kind enough to visit and bring us food (thank you!!!) but I can’t wait to get out of this little room and back to life. I’m gonna go out on a limb and say Emmett feels the same way. Anyway, wish us luck! Will provide updates if anything changes.

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