Tuesday, March 18, 2008

chILD (Children's Interstitial Lung Disease)

You know you are a chILD parent when . . .

You compare ER’s and doctors instead of grocery stores, and malls.

You compare your child’s oxygen saturations, PFTs (pulmonary function tests), CT scans, and meds with other moms.

You wake up several times a night to… “Just check the cannula (nose prongs)”.

You have more medical equipment in your home than most third world countries.

You view toys as “therapy devices”

The clothes your infant wore last fall still fit him this fall.

You cheer instead of scold when they blow bubbles in their juice while sitting at the inner table (that’s speech therapy), smear ketchup all over their high chair (that’s OT – Occupation Therapy), or throw their toys (that’s PT – Physical Therapy).

Fighting and wrestling among siblings is also considered PT (Physical Therapy).

You also don’t mind if your child goes running thru the house tooting a whistle or blows soapy bubbles on your living room carpet.

You’ve fired at least three pediatricians and can teach your family doctor a thing or two.

You have been told you are “in denial” by several medical professionals....AND... This makes you laugh!

You have that incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!

You get irritated when friends with healthy kids complain about that ONE sleepless night when there child is ill!

The Doctors/Nurses/Specialist/Hospitals etc. all know you by your name.....without referring to your child’s chart.

You keep a DAILY growth and weight charts.

You calculate monthly statistics for the number of times your child vomits, coughs or runs a fever, AND ……you did this for more then one year.

You keep your appointment at the specialist even though a snow storm is raging because you just want to get THIS ONE over with.....you waited 8 months to get it.....and besides, no one else will be there!

Your child’s medical file is two inches and growing.

AND finally, You never take a new day for granted.

A week or so ago I found a new website for the chILD Foundation and the above comes from the website. Actually, they found me, through James blog and requested to have James blog added to their website. (under the Family Support Section) Reading this brought back a flood of memories as a good portion of it is so very true. I'm sure the same list could be said for most parents with a chroncially ill child, but it definitely hit home again. It made me realize how as we go on with a normal life so many families are still out there struggling to find answers and help for their children. We are not confronted with it daily anymore and so the reality fades and sometimes it's good to have that reminder of how fortunate we are when our children are healthy. It also made me feel bad for my post not long ago about how sick I am of doctors, for I really have nothing to complain about. The calendar still seems to be filled with far more appointments then I would like, but these appointments are not as time consuming. It takes less then ten minutes to throw together a diaper bag and pack the kids into the van. It doesn't take me an hour to get ready to go anymore. I don't have to switch the feeding pump over to the portable bag, switch the oyxgen over to the portable tank, pack a cooler with extra formula and prep medications for while we are gone. Pack the Sats monitor in it's bag and then pack the diaper bag, never leaving the house without extra clothes. So ya ... that's five bags to pack. And we can never leave the door without James saying "stinkies" only minutes before we would leave ... the joys of a kid that had 6-8 dirty diapers a day. Plus we always had to run down a good assessment of how he was doing before we left to make sure he would be stable for the ride. Double check the van to make sure the vomit bowls are still in there (in case we forgot to put them back after we cleaned them). And that was just getting out the house ... never mind leaving early enough to give time in case I had to pull over because James was vomitting (let me tell you about a super two year old who was able to hold a vomit bowl, catch it all and then wait patiently while I pulled over to help him clean it up), and enough time to unload all the equipment again when we got there , plus usually having to do an couple minutes SAT assessment when we arrived to see how the movement and outside air was effecting him. And of course there's arriving home again to switch everything back over and unload. Wow, just thinking through it makes me realize how easy it is to pack up Matthew, it's amazing how quickly we forget these things.

I think my frustrations last week was more that mentally I had thought that we were saying good-bye to the hospital, the "family" we had developed there and all the medical research and questions ... it was just depressing to feel like we hadn't reach the end of that road yet. It makes me sad but at the same time I enjoy my visits to the hospital, it is a bit like visiting "home" after being gone for a while. To look at the changes and still be able to know a good portion of the faces when you return. With time this will all fade and it will feel less like home ... which is good. It's depressing to know that just because our journey is over it doesn't maean the hospital isn't still full of many others who are struggling. Already during one of my appointments I noticed a very heartbreaking change they made. It really wouldn't effect anyone else and is such a minor unimportant issue when it comes to a hospital, but it sure hit like a ton of bricks when I seen that they had replaced "James'" fooseball table with a new one. There was absolutely nothing wrong with the old one, so I don't know why ... except maybe to keep in line with Macs idea of always having to have the newest and the best ... but somehow it made the whole room like a different and unfamiliar place.

The chILD website is relatively new and they are working hard to make more awareness of it and the connections it provides. At this time they are still working on getting more information about disease and disorders into the site, but sounds like they're hard at work. The site helps you to connect with doctors who specialize in Children's ILD (Interstitial Lung Disease) Since it is relatively new the first issue they have to overcome is having it come up near the top of a serach when people use a Search Engine. Websites come up based on how many times the link is used after a search and how many other pages are linked to the page ... so a new website takes some time to work it's way up to the top. You can help by doing a search in your computer for chILD Foundation (http://www.childfoundation.us/) or intertitial lung disease. I did it again today and noticed that the work of the group has paid off as it's near the top now. They are suppose to be trying to get it to come up better when you type in the name of your disease, but so far I didn't find the Foundation when I typed PAP. Through this website there is also a Yahoo Health Group where those with ILD can chat together and try help each other out. I'm not sure if this would really have helped any but it would have at least been a place where you can connect with those who have a bit of an idea of what you're dealing with ... and who know all the acronyms that we like to use :)

Even though our lives are no longer completely filled with LPI, PAP, ILD, UCD (Urea Cycle Disorders) and all those other lovely acronyms, they still live in us and we have to decide how to use what we have learned. Do we put it away or do we put it to use. This is still something I'm working through.

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