Saturday, October 15, 2011

Preparing for War

When Jie Jie went through her dental procedure, the anasthetic had a side effect that I thought was positive and wanted to know more about it. I had a telephone consulation with the local specialist in this area and we spoke for 55 minutes. In that whole conversation, the specialist was not at all knowledgable or interested in the side effect, but wanted to get my daughter under general anasthesia again so he could examine and "map" her anatomy, where it's different, and run cameras and dye into her. This exam does need to be done, eventually, but I really wanted to know why she reacted as she did to the Propofol, first and foremost.

I couldn't let this rest. I had a terrible niggling feeling that this specialist wasn't competent to handle Jie Jie's special need, that he should have been more interested is why Jie Jie had this side effect. Honestly, I know she looks great in her pictures and she functions very well, but her need is complicated and at the severe end of the spectrum, and it's life-long.

So, I called the children's hospital in another state that is the world leader in this special need and spoke to a nurse specialist. In ten minutes she was able to double check the most probable reason for the side effect, and, explain why it's not a good thing to have happened. Uh oh. That white lightening bolt of fear slashed through my heart, while, at the same time, certain knowledge that local specialist, the one and only in my HMO, definitely isn't qualified to care for my daughter. My hospital doesn't even have the diagnostic equipment to check what needs to be checked. AND, I don't believe any of these doctors even know that they can't check for what needs to be checked because they just haven't dealt with this before. They think they checked already and declared Jie Jie fine, but due to her low muscle mass, the test can come back falsely healthy. Essentially, it might already be too late. Some damage could already have been done and the damage we are talking about is to an organ essential for life, but transplantable, if necessary.

I am calling a conference with Jie Jie pediatrician to get the ball rolling to be sent outside my HMO to the out-of-state hospital and I won't let up until we are there. The local pediatric surgeon I consulted with is very good and I have faith that he'd do great surgery, but it's the rest of the care Jie Jie needs that can't be found locally. This surgeon wants us to stay local simply for the reason that we live here and will need life long support, but I have had more support from this out of state hospital so far, than anything found locally. I should mention that I've been in email and phone contact with the out of state hospital from day one and they've been fabulous.

Please pray that this process will go smoothly for us, that I won't have to "go to war" and expend so much energy fighting for this that is takes away from the time and energy I need to be a good mother. At the same time, please pray for another special family, whose blog is private. They just received the news that their child has a special need quite different from what they thought and the prognosis is terminal. I'm having a hard time wrapping my heart and head around that and can only imagine what this family, especially this child's mother, is going through at this time. All the while, I am also giving thanks for the divine miracle given to another family whose daughter was also given a diagnosis that was terminal and now, a healing miracle occurred that has given this family hope that their daughter will be eligible for a heart transplant that will save her life.

Parents of children with special needs are in such a marvelously indescribable place, so near to God, often, because all that is occurring with our children is in His hands and without our faith in Christ, I don't know how we'd get through it. We have a front row seat to modern day miracles that are astounding even the most highly trained specialists in the most prestigous medical establishments and a front row seat to the miracles that occur in our own homes and hearts on an almost daily basis.

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