heavy heart

Tonight my heart is heavy. I am not feeling sorry for myself or Lindsay. I am just tired. Today she was an amazing little person and had her shunt tapped. She was so good and never flinched when she had blood drawn. It was decided that she is in fact reacting to her tubing. The new tubing, the old tubing and the codman valve. UGH! So now we go onto polyurethane tubing which opens its own can of worms. But we are hoping that the polyurethane tubing, because it does not contain silastic will allow her not to reach to it. I am getting a bit fearful that we are never going to find anything that will allow her to be comfortably shunted.

Felt so good...

After a long break from blogging...It felt so good to blog and to just let it all out. I feel as though a load has been lifted off my chest. :)

I am preparing for a garage sale. The baby clothes that I have not given away are being sorted and ready to be sold. It is amazing to think that I am ready to get rid of everything that I once held so dear. The Moses basket, the pack and plays, high chairs, potty chairs, toys, clothes, strollers, car seats and so forth. I have to admit though, I have a compulsion about buying strollers and car seats. I have more of both than I have children. (Don't worry I still am using boosters-No lectures needed) I am so ready to get rid of all this stuff. Of course, that means that I will now get pregnant. Seriously I do not believe that God would do this to me at this point in time. It just might push my ass right over the edge!

In a week I will be packing up my truck and heading out to discover camp! YEAH! It will be another awesome year!

In Lindsay news... She is doing crappy and gave my mom a scare. We go Thursday to have a shunt tap. So...we will see.

What is a 5 letter bad word that begins with S?

S-H-U-N-T!

I am very frustrated and tired. I dislike shunts! I dislike that fact that 2 of my children will forever need a shunt to function in their life. I dislike the fact that, yet again, my daughter is reacting to a shunt tubing. We are getting down to the nitty gritty and I am becoming terrified of what will come if we cannot get a shunt for her that she is not allergic to. She HAS to be shunted. She cannot function without her shunt. She will loose vision also, if not shunted.

I have, as gracefully as possible, watched my child go through a revision, wound infection, shunt track infection, PICC line insertion, home IV antibiotics, PICC removal, too numerous allergic reaction and drug sensitivities to list, severe abdominal pain, allergic reaction to her shunt, meningitis, peritonitis, surgery to externalize her shunt, surgery to remove her shunt,picc line, procedures out the wazoo, surgery to replace her shunt, more doctors, more pain, more narcotics, another surgery to change out tubing, skin testing and now again, severe abdominal pain, shunt track pain, neck pain, light sensitivity, severe head pain....and now either allergic to her tubing or brewing an infection.

Which one is worse at this point in time? Meningitis would make her very sick, for all intents and purposes it could be fatal. However we would only be removing her shunt and then eventually replacing it. If she is allergic to it, mark off ANOTHER shunt tubing type and then we are down to 1 tubing.

Where do we go after that? No one knows. At what point is watching your 8 year old child suffer in pain and take narcotics that she should not even know the name of but call tell you her dosages and times...at what point does SHE stop taking the punches? I know that God has a reason for all of this, but seriously God....I am asking you to please show us the end of this path soon. One that has a marvelous outcome for her. Lindsay is honestly one of the most remarkable little girls that I have ever met. She continues to function even though her pain is over the top. Today she did beg to go to the hospital. And I would not give in. They cannot do anything for her there. I pacified her by emailing Frim. Telling him what is going on and our plan is to do a shunt tap and rule out/in if she has an infection.

I am a bit of a bitch. I am so fed up with people's crap whining about a little fleck of a problem. A problem that they make into a huge ass drama mountain. I just want to take my flip flop off and smack them upside their heads and scream...WAKE THE HELL UP!!!! YOUR CHILD IS HEALTHY!!!! SHUT THE HELL UP! But I do not. I listen to their crap, roll my eyes at things they whine about and go on. I am a firm believer that everyone's issues are big to them. Honestly, I am though I realize that this rant says otherwise....But people just need to STOP for 1 minute, reflect and take time to smell the roses. Appreciate what they HAVE instead of whining about what they DON'T have or what they WANT to have. Appreciate that little person in front of you....One day something can happen and who they are at this moment can be snatched away from you.

My vent is done.