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
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
posted by Denise Clayton @ 5:51 AM
1 Comments:
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