Life with The Leivas: My First Discharge Class-Day +25

Monday, August 17, 2009

My First Discharge Class-Day +25

Today I went to my first discharge class. It was pretty informative. So far I haven't been overwhelmed at all by what we're expected to do when we go home, but all this discussion about discharge definitely has me looking forward to discharge! We did discuss the fine line between living your life and becoming completely obsessed with trying to manage every aspect of your child's health and well being. For example, you don't want your child to be exposed to any germs but you have to be able to leave your home.

Olivia is continuing to do very well. They are continuing to decrease some of her medications (the steroids and her constant pain medication). The did end up having to add another pain medication yesterday evening but it's one that they would have started her on anyway we are not too concerned and if it's helping her feel better then she obviously needs it. They also began to decrease her TPN so hopefully her appetite will begin to return. She did drink a lot today so I'm very excited about that! I am a little discouraged but I'm trying to remember that every doctor is different. A couple of weeks ago when Dr. Parikh was on rotation he said that Olivia would most likely be discharged in a couple of weeks. Now Dr. Driscoll is on rotation (the attending physicians all take turns having a 2 week rotation on 5200) and we've learned that Dr. Driscoll tends to be very cautious about discharging patients from the hospital. I'm not trying to say that Dr. Parikh isn't cautious, but we're learning that every doctor is different, they all want what is best for your child, but they all have different ideas of how to reach that ultimate goal. In any case Dr. Driscoll told me today that he's expecting that Olivia will be able to leave the hospital the week of August 31st so we still have a couple of weeks here. Dr. Driscoll keeps saying that Olivia engrafted very early and that we're only at day +25, that the fact that we're even discussing discharge is remarkable. I'm sure that it will come soon enough but after living in the hospital for 36 days we're really starting to look forward to leaving!

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MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.