September in progress

September has really been banger of a month. Stephanie got out of the hospital just in time to start her first day of school. She had many appointments that first week of school however she did manage to attend school between seeing her docs Friday was the eventful day. She was not well so I took her to the GI clinic to have her tube looked at as it is often the source of the problems. It looked good we cleaned it up and had her back at school for 9:00.

Within a few hours I got the dreaded phone call that Stephanie's g tube had fallen out at school. Thankfully Greg was home that day and could rush over to the school. He got the catheter in but Stephanie let out a scream and it pop out and onto the floor. So, we must have to rush off to sick kids before everyone leaves for the weekend. Stephanie was very brave through this whole thing. Her biggest concern was that she was without her tube. She believes she actually is lucky to have it as it keeps her well. So without the tube her anxiety grew.

Stephanie really is not bouncing back from this recent hospital stay. We think she is really unwell but refuses to actually tell us in hope of not having to return to the hospital. We are trying to work with her but her disposition lately is really black or white. She said her tummy is making her angry. It is so difficult to watch a sweet little girl go through this every day.




Thats all for today
Denise

Rollercoaster August

Well, August has proven to be a very interesting month. I have not posted as we have been busy trying to keep up with the summer and all. We were advised to keep Stephanie distracted this summer so she spent her days in summer camp, and weekends found us at the local amusement park. The tactic of keeping her occupied worked for the most part, however, Stephanie would tire easily. We thought several times that we should take her to the hospital for some bowel rest and each time she appeared to overcome the pain. Her Gabapentin has been increased once again and we do feel it is helping Stephanie cope better.

Looking back, I wonder if we were just postponing the inevitable. She was getting worse by the last two weeks of August and we really just saw her going down a slippery slope. At these times Stephanie's behavior is off, with wild temper tantrums, which is exactly what happened. We took her to emerg on Friday and although she looked well we knew things were off. It is always very difficult for all involved when going through emerg with Stephanie as she often does not appear to be as sick as she actually is. She is also very smart and knows what the next steps will be if she gets admitted (IV's, ng tubes....). The surgeon actually came down and admitted her and within a few hours, she was unwell and vomiting green (a difficult task for a girl with a fundoplication). We used her g tube to vent her and she was draining about 500 cc at a time. Stephanie actually said that she thought she was very lucky to have a g tube because now she does not need an ng tube. While in hospital we had a chicken pox and MRSA scare, so we spent the week in isolation. In the end Stephanie was cleared; better safe than sorry I guess.

The highlight of Stephanie's hospital stay was again the visit from the clowns. Her old buddy Doko was back after a leave, so Stephanie was thrilled. She also kept busy with another favorite, Bunky, as well as Shaynee the therapeutic dog and the many wonderful volunteers.

The plan is to have a team meeting sometime this month to try to figure out our next step, as we really are just maintaining Stephanie. Now hopefully we can move forward with something else to try to get her through this. She is starting Junior Kindergarten on Tuesday so hopefully the transition will be good.

So, August is over with a week of bowel rest and we are ready to tackle September and move forward with JK.
Denise

Stephie's Page

Stephie's Page