Monday, February 28, 2011

Make A Wish

We got some good news today. Our S. is qualified to receive a Make A Wish! It took quite a while and a lot of advocating for him, but it is starting to come together. Our doctor was able to speak with the MAW chapter person, and she explained to the doctor what criteria does qualify. It was decided that having the VP shunt does qualify him for a wish.

If there is any question if having a shunt is considered a having life-threatening condition, read this:

Hydrocephalus is almost always treated successfully with surgical placement of a shunt or an ETV; but rarely does either treatment last a lifetime without complications. A critical aspect of managing hydrocephalus is being well informed and staying vigilant about potential life-threatening complications. Most problems associated with shunting or ETV occur weeks or even years after the surgery. When things are going well, it is easy to forget about hydrocephalus and having a shunt or an ETV. We encourage you to stay alert and informed.

Knowing what symptoms to watch for will help you become more at ease. Although the early symptoms of shunt malfunction or infection in children—fever, vomiting and irritability—are similar to many childhood illnesses, you will learn to determine the symptoms associated with shunt failure in a particular individual. Adults tend to exhibit the symptoms they experienced before treatment when there is a problem. If you have any doubt about symptoms, don’t hesitate to contact a doctor. If you suspect there is a problem with the shunt, you are wise to have it checked by the neurosurgeon rather than ignore it. It is better to have a false alarm checked than to leave it unattended. Remember, although shunt complications can be very serious and become life threatening, they can be treated successfully when they are discovered early.

An estimated 50% of shunts fail within two years and 20-50% of ETVs close up within five years. Either treatment can fail at any time. Infections are less common, but still not infrequent. Be informed and vigilant. Be prepared to act quickly. Mere hours can mean the difference between a resolvable complication and brain damage or even death, especially in children.

I am so thankful for the time Make A Wish took to work on behalf of S. They didn't just dismiss him at the first stage of the application. They really cared and made many phone calls to get things sorted out.

Now we will have S's paperwork sent to two local MAW volunteers who will be meeting with our family and S. They will talk with him and try to see what his most heartfelt wish is. This will be complicated, since the whole concept is not really understood by a 3 year old. Once we asked him if he could have anything in the whole world, what would it be? He said, "a cookie!"


One Crowded House said...

that is awesome!

Miaja said...

My child with Hydrocephalus was denied a wish by Make-A-Wish. Can you tell me more about how you were able to do it? My daughter is already 17 years old, so we don't have much time. Thanks.

Miaja said...

Can you tell me more about how you got approved? My daughter who has hydrocephalus got denied a wish from them. They told me they rarely grant wishes for hydro because "they can just get a shunt." Which is ridiculous-I know many who have died from hydrocephalus. They grant wishes for kids with cancers that can be cured. Anyway, feeling kind of out of time since she will be 18 in 10 months. I'd love to hear more.

Anonymous said...

Miaja did you ever get a response? Our daughter was also denied.

Kim said...

I am sorry, Miaja that I haven't replied! I don't really know what to tell you, other than trying to talk with your doctor about the form. Our son's hospital clinic doctor said no, not life threatening. Then I spoke to our local pediatritian, saying that one of the reasons he is here and not in Haiti was because hydocephalus can be life threatening in the event of a shunt failure. From what I have heard, some MAW chapters are tougher than others to get approval. Best wishes!!