Life with The Leivas: Getting ready for the goodbye

Wednesday, September 2, 2009

Getting ready for the goodbye - Day +41

So tomorrow is supposed to be the big day....Discharge Day. After 52 days in the hospital I am so ready to get out of here. Ready to be one step closer to having a normal life again, ready to be one step closer to having our family back together. I thought I was prepared for discharge. I know as much as I can about Olivia's medicines. I feel comfortable doing labs and dressing changes. I am ready to get out of here! But as I sit here trying to get some sleep there is just one huge part of discharge that I am absolutely not ready for at all...the guilt and the sadness.

There are 16 rooms on 5200. Of those 16 rooms 7 of them are occupied by kids that were here when Olivia was admitted. They had their transplants before Olivia did, they had their chemo before Olivia did, they've been here longer than Olivia has been here, their parents have had more sleepless nights than Mike and I have had, those kids should have gone home before Olivia, but they're not, they're still here. All of these kids are amazing in their own ways, they are all so precious and I wasn't prepared for how much I would care about each of them. This has been a pretty stressful week up here on 5200. With the flu season upon us and cases of H1N1in the area the visitation guidelines are starting to become stricter. Patients are always required to wear a mask when they leave their rooms but as of this week parents, and visitors are now required to wear masks when they are out of the patient's room and nurses and doctors must wear them constantly. I noticed a bright red emergency crash cart outside of a patient's room down the hall, it's a glaring sign that the staff is preparing for something very bad to happen in that room and it just breaks my heart. For the last 2 months the kids on 5200 have become Olivia's only friends, their parents have become my friends. In the same way that only another military wife can really understand what it's like to go through a deployment only another parent of a kid in a PMBT unit can understand what it's like to go on this journey with your child. I know that I should be happy to leave tomorrow and I'm sure that I will be but for tonight I'm just sad. Please keep all the kids here on 5200 in your prayers, especially the special 7.

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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.