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Wednesday, October 19, 2011

What a difference a year makes

This morning as we sat in the little exam room waiting for Kaida's GI doctor to come in (yes, big sister has digestive issues too), I realized that it was exactly a year ago today that Raya was admitted to PCH for "the big one". It was a Monday, and Donny had flown out of town the day before and wasn't coming back until the following Sunday. It was the kids' last day of fall break and we had gotten up that morning and decided to do some serious cleaning. I had gotten tired of the smell of Raya's pack & play that she had been vomiting in several times a day for many, many months. I took the smelly bed out of my smelly room and put it in the kitchen on some towels so I could clean it. I got a tub of hot, soapy water and a scrub brush and soaked that thing down. When I had scrubbed all that I could scrub, I turned it upside down to dry.
While I was cleaning Raya's bed, I had made her a makeshift "cage" out of the baby gate and some waterproof mattress pads & blankets on the floor in my room. I went to check on her when I heard her throwing up, and saw that she was still vomiting old blood. Not a surprise since she had been for over a month. This was a little more than she had been doing, and I had realized over the past few days before that that her vomiting was increasing in intensity and overall, she just wasn't feeling well. Just for kicks, I took a picture of what she had thrown up onto her blanket and emailed it to the nurse so she could show the doctor what we were dealing with. Sorry, but here's what it looked like:
All of the dark-colored flecks are blood.
 After I finished with the pack & play, we moved on to cleaning & organizing the play area. As soon as I had torn everything apart to give it a good thorough cleaning, the nurse called. She said that the doctor had seen the picture & read my email and had called the hospital to let them know that Raya was being admitted. She said that she'd call me back when they had a room ready. The next task was farming out the kids since Donny was out of town. I panicked a little at first because the kids had school and I didn't know who I was going to be able to talk into staying with them or taking them for me. I called my friend Robyn, and the conversation went a little something like this, "So Robyn, I know we've only known each other for about 2 months, but would you mind letting my 2 school-age kids sleep over at your house for an indefinite amount of time while I camp out at the hospital with Raya?" Luckily, Robyn is a saint and gladly took the kids for me, and reassured me that it would be no big deal at all. I had to abandon the soaking wet, upside down pack & play in the kitchen and the torn apart play area & living room and scramble to pack up what they would need for the week. As soon as the hospital called, I dropped them off at Robyn's house. On the way to the hospital, I dropped Kaida off at my sister-in-law's house and called to cancel Raya's feeding therapy appointment for the next day.
The first few hours were rather unpleasant. Raya was no dummy and it wasn't her first time at the hospital. The reason her doctor admitted her was so that she could get IV fluids and go on gut rest for 24 hours and then get a GJ tube placed. She estimated that we'd be there for 2 days or so. I had packed an extra bag of clothes in my car just in case. Once we got checked in and into her room, the next item of business was the IV. She has tiny veins that roll easily and have a lot of valves in them, so she rarely gets away with less than 3 pokes.
I'd have to look and see what the exact time line was on everything but either Monday or Tuesday we went down to IR (interventional radiology) for the GJ placement. Since their first attempt in September had failed miserably and she happened to have an IV in, they gave her versed through her IV to relax her. The GJ tube went in with no problem and we headed back to her room with high hopes that the vomiting would stop, or at least slow down since there was nothing going into her stomach.
It didn't. She puked and puked and puked. Instead of puking formula, she vomited bile. It was awful to watch (and smell). To alleviate the vomiting, they wrapped a preemie size diaper around the G extension tube and allowed her stomach to drain and vent. For the next few days,
I changed her diaper and I changed her G tube diaper, and the G tube diaper smelled 10x worse than the other diaper. The closest comparison I can think of is a skunk. It's pretty sad when your child smells so bad that you don't want to get too close to her.
After she started losing so much fluid from her stomach and continued to vomit several times a day, the whole game changed. I knew we weren't going home until things were under control, but nobody had any idea how long that would be or how exactly to get there. Our roommates changed every couple of days for the first week. We ended up having a miserable experience with one roommate that just happened to be at the same time that Raya's nurse (who is the ONLY one out of 17 that I REALLY didn't like) decided that Raya needed to be tested for c. diff (a really awful illness that causes diarrhea and is highly contagious & isn't killed by hand sanitizer). Since she was being tested for it, she was quarantined to her room until the test results came back, but since the nurse had dilly-dallied around in doing the test, the results wouldn't be back until the next day.

That was probably the most miserable day of the whole thing because we were essentially quarantined to our room with a roommate who had been brought into our room in the middle of the night suffering from an unknown illness that caused her to have diarrhea & vomit. I was furious when I found out because she had NO business being in the room with my GI-compromised but otherwise healthy child. The roommate's parents spent the day arguing with every doctor and nurse they could find to argue with, and just made the day miserable for everyone. Our tech violated the protocol for contact precautions right in front of me, so once I complained to the charge nurse about my concerns, they moved us into a new room with a teenage boy that had MRSA. The next couple of days pretty much sucked too, but we got a really nice roommate and I told them not to assign that nurse or tech to us again. I got visits from a couple of friends that really lifted my spirits and Donny came to visit a couple of times so I could go home and take a shower & get clean clothes.
For several days, all we did was monitor her fluid loss and keep checking her weight and changing her sheets every time she puked. We adjusted her medications and waited to see if it helped. Halloween got closer & closer and then it came & went and we were still there. Finally, the day after Halloween, the doctor that had been doing rounds for the week decided that she would be better off at home and we were discharged. She came home on 6 medications and a crazy contraption a nurse rigged up to catch and measure Raya's stomach drainage.
One year later, we are in a completely different place. A lot of good came out of that hospital stay. Because things escalated to that point, she was accepted for motility testing and scheduled a few weeks later rather than the 4-6 months they had told me we'd have to wait. The changes we made during that miserable hospital stay eventually worked for Raya. 6 or 7 months later, she finally stopped vomiting. She's back to being fed into her stomach and for a while, she was eating 100-200 calories a day. She went from this:

October 2010
to this:
She's bigger, stronger and healthier than she was a year ago and life is much less hectic and stressful. Today, I'm counting my blessings.

1 comment:

  1. Yay for one year and better off anniversaries! And thank goodness for doctors that get tired of seeing you. I'm convinced that's how we got discharged too.


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