After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Saturday, February 27, 2010

Never a dull.....

...MOMENT! That is what the doc said the other day when we went in for a last minute clinic visit. Boy, that is so true. Just when things start winding down a bit, we go and get exciting again.

Last weekend Summer was miserable. I went on an all day trip with little Tom...when I got home, my hubby said Summer had been crying for most of the day. She wouldn't settle down and was very uncomfortable. He ended up holding her most of the day. Her belly was very bloated, so we tried venting the extra gas from her G tube site...this gave her a little relief, but it was temporary. She had also thrown up a few times, which she does do, because of reflux, sometimes anyway.

Sunday morning she seemed okay, but by afternoon the gas was building up again. Tom's family was in town for the weekend, so we went to visit them before they left that afternoon. Right after we got there, Summer started acting very uncomfortable again. She threw up a couple of times, and was starting to be in a lot of pain. When we picked her up, holding her under her armpits, she would cringe, and crumple up her body into the fetal position. We couldn't move her very much or she would start crying. We ended up holding her quite a bit and venting her tube a lot. This helped for a short time, but she returned to being miserable fairly quickly. We got home around 7 and had to hold her until she went to bed.

Over night, Summer woke up periodically crying, but would go back to sleep. When I got her up that morning, she was still very bloated and in pain. I called the nurse to see what we could do. She said it sounded like maybe Summer was swallowing extra air and we were to vent her more often and try gas relief drops. She did okay for most of the day, but refused to move much. Every time I opened the G tube plug, air came whooshing out, followed by some formula. Her belly was very hard with air....

She had another restless night and seemed to be just as bloated, if not more so, the next morning. I called the nurse....they managed to get us into clinic that day at 2 PM. This was after me commenting to a friend that I wished Children's Specialty clinics were like our Pediatrician's office.....usually we have to schedule an appt. at least 2 weeks, sometimes a month, in advance! We chucked our plans for the week (which were just a couple more medical appts. anyway, oh, darn, ha ha) to prepare for a possible hospital stay... and went in to see the GI doc. Summer, of course, was still smiling....until I moved her. I showed the doc the pain she was experiencing, so she ordered some tests. She was worried that Summer might have a partial bowel obstruction....something called a stricture (a narrowing of the intestines that creates less flow and backup). She was still tolerating her feeds, wasn't vomiting, and was still stooling, so she didn't have to be admitted, YAY!

First we did a blood test to check for anything brewing....then some x-rays. Nothing significant was found, so we went home and had to return the next morning at 9 AM for a belly ultrasound. I had packed my overnight bag, just in case, so kept in the car.... The ultrasound showed nothing obviously wrong, but they couldn't get a good picture of certain areas because of all the extra air in her belly. We had to meet up with the nurse for a vitamin K shot, so she also let us know at the time that the doc wanted to do a lower GI study that afternoon. We had 3 hours to kill, so I went out to lunch....Summer watched and threw chopsticks on the floor. :)

We headed back in for the test a little early, but still ended up waiting a long time....when they got us in the radiology lab, the tech asked if Summer had had any surgeries.....YES, a few. So, we had to wait for the radiology doc to be done with another test before we could start. Poor Summer was so uncomfortable....then came the enema! Yup, a barium enema....lucky girl. She was SO upset, the nurse was blowing bubbles and everything, but Summer wasn't thrilled AT ALL! They had to strap her on a rolling board around her chest and belly....and tape the catheter to her bum. I was so glad she doesn't have a nasty rash right now....I'm sure Summer would have preferred to skip the tape all together.... I held her hands while she screamed the whole time and got to watch the fluoroscopic study on the screen. I was amazed how little her intestines really are! Usually, looking at a pic of normal intestines, there is quite a hefty pile of them, Summer's looped up and down maybe 3 times and are very dilated...they look "fatter" around than they should be. I had known they were dilated because the surgeon who placed her G tube had commented that is was a very good thing for her....more surface area to help with absorption :) The doc mentioned she had very little....I filled her in on Summer's success and she was very happy for us. She just kept saying, this is HUGE (off TPN and thriving)....yes, but huge just isn't really even the best word to begin to describe her success. She agreed. She told me that kids like Summer are very special...they are usually the most empathetic, sweet spirits that bring a lot of joy. Both of us got a little choked up...I told her we have already seen so much evidence of that with her...she lights up every room she enters!

After the torture was done, I cuddled took her a while to settle down, but the nurse read her a book, which she gave to her, and distracted her to the point that she stopped crying :) The doc showed me the pics they strictures! The bowel was very dilated, but was evenly so, which meant no stricture (narrowing). There was still no reason to keep her overnight....phew!

We went home, but I left my packed bags in the car.... The barium had created quite the impressive blow out in the car and it just kept coming. Summer was acting like she was feeling a little better too. She had several nasty diapers and was now burping a little more than she had been. She also acted like she was in less pain and could move around a bit. She even rolled over that night to grab a toy! I talked to the nurse the next day...she was encouraged that Summer was feeling better, but was going to check with the doc to see if they wanted to do any more tests. Through the day, Summer had several blowout diapers and was getting less and less bloated. I talked to the nurse again around 5....she said since Summer was feeling so much better, they were going to hold off on doing the upper GI study for now. They were starting to think maybe Summer had a funky virus that has been going around. Some of their other patients have had to be admitted for dehydration related to the virus and had some similar symptoms. Morgan had thrown up that morning as well, so this theory seemed probable.

By now, Summer was feeling so much better! She continued to be even happier and less bloated as the weekend went on. She had returned to her "old self"....kicking, chatting, smiling, laughing, even rolling a bit....she hasn't done this for over 5 weeks....since her G tube surgery! We figure the next time Summer is feeling sick, we can hook her up with a barium enema! I think she might still have an ear you think it would help? Ha ha....okay, she might not appreciate it very much, but hey, it seemed to do the trick this time!

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