Trying to get back to baseline…

The last few weeks have been pretty rough for Faith. We have had two long ER visits and a hospital admission. About two weeks ago, Faith started with a stomach virus that took its toll on her little body. She had severe vomiting which resulted in her needing IV fluids. We just couldn’t get enough in through her G-tube to get her re-hydrated without causing even more GI distress. We thought she was getting better and was back to herself last week when she started getting excessively fussy. Faith has always been fussy at times without a whole lot of explanation but this time the fussiness turned into inconsolable screaming episodes that were lasting hours. Then, sometimes the crying and screaming would become more intermittent. By Thursday of last week, she started running a fever. She had no signs of illness other than how she was acting and the fever. We went to her pediatrician Friday and still had no answers after checking everything that could be checked in a doctor’s office so we ended up back at the ER. After 7 hours of tests and ruling things out, Faith was admitted to the hospital for the weekend. Unfortunately, we don’t have any real answers to what was causing the fever or screaming episodes. The doctors wanted to rule out intussusception since Faith appeared to be having severe abdominal pain. This occurs when one portion of the bowel slides into the next, much like the pieces of a telescope. When this occurs, it can create a blockage in the bowel, with the walls of the intestines pressing against one another. This, in turn leads to swelling, inflammation, and decreased blood flow to the part of the intestines involved. The doctors were not able to detect this happening on a x-ray or ultrasound. However, it can happen and sometimes cannot be observed especially if it is not occurring when the x-ray or ultrasound is being done. It isn’t completely ruled out but Faith’s screaming episodes and fever stopped by Saturday morning.  It is possible that she had some kind of viral infection without other symptoms. Even though she has been on stress doses of hydrocortisone due to her cortisol deficiency which we started when she got sick with the stomach virus, it is also possible that her body has just not fully recovered since her body does not handle stress well. We are also still concerned about the amount of gas and reflux that she is still struggling with which is making her very uncomfortable. We are increasing the frequency of Miralax as well to help with constipation that seems to be a result of her hypotonia.

Right now, Faith is still fussy and restless at times. Overall, she is doing much better and finally got some sleep. For about 3 days, Faith was unable to sleep more than 2 hours each day. Her sleep medicine wouldn’t even help so we were very concerned about this additional stress on her body and her ability to recovery from illness without adequate rest.

The last few weeks have not been very productive in terms of Faith’s therapy sessions. It is hard to know if this is solely due to her being sick or if we are just seeing more regression. She seems to be struggling more with sensory issues and is just more fussy during therapy sessions. We are hoping that we can get Faith back to her baseline soon. We will be following up with her endocrinologist, neurologist, and GI doctor in the next few weeks to address our concerns.

Feeling so helpless when Faith is struggling is one of the worst feelings and is so emotionally draining. We hope to learn ways we can help her.  We just want Faith to be happy and comfortable so we are hoping her team of specialists can help us achieve that for her. We are hoping that Faith will have a healthy rest of the holiday season and that we can make some progress in 2012! Thanks for all the thoughts and prayers during Faith’s recent hospitalization.

Keeping the faith,