Uncommon Joy

Our trip to Children's turned out to be a disaster for the first 4 hours . . . A week before I looked at Kourtney's arms and knew finding a vein would be tough so I attempted to arrange for Kourtney's regular anesthesiologist  to be there to start her IV, however, we always get the same answer.  "I may be busy . . . not sure if I can come always, but happy to help."  It would have been nice to know, "I am too busy, there is no one else I can speak to, or even don't bother me!" I find there is an underlining tone with our health care professionals - overworked.

 When we arrived at the clinic I told the nurses right away that an anesthesiologist needs to start Kourtney's IV.  I told them I will wait as long as I have to but I would not put my daughter through the torture of having just any body trying to start her IV. It was like I was in a foreign country speaking a different language because despite expressing my concerns the IV team still comes (after a 2 hour wait) and the stressed out nurse takes one look and makes the proclamation, "No, no I can't do it."  Umm, was there really any question??  Bam! Two hours gone, then  the stressed out nurses say, "Maybe we should call  an anesthesiologist."  (Wow! I say in my head, what a novel idea. I thought of that more than 2 hours ago.)  I maintain my cool everytime I go there because it is not worth while getting upset. Maybe it is because I understand nurses, and their dire need to follow protocol rather than consider the whole patient picture. Anticipating a long wait we did manage to schedule an appointment with the pshchologist and had a very rewarding talk about the new issues that I will mention below.

 When the anesthesiologist finally arrived, after a 4 hour wait, the staff trip all over him and thank him over and over again for "making time for Kourtney".  I want to throw up by now as I know that  anesthesiologist put the special in specialist. Some of them have a bit of a God complex. However everytime this has happened in the past their "inconvenienced look is reduced to one of sheer compassion when they look at Kourtney's skin and what they are up against. In the last 4 years we have been going to children's hospital I don't think we have had the same anesthesiologist start her IV other then Dr. Lauder, although Kourtney's name is becoming more well known in certain circles. I don't think anyone understands the reality until they actually see her. The anesthesiologist arrived at the conclusion that nobody else should be touching her and we should book an anesthesiologist  everytime we come in.  Wait, where have I heard that before?  Oh yeah, I'm only a parent.

 Every time we go in the idea of a VAD is suggested.  Unfortunately with Kourtney's chronic infections as well as skin breakdown, we feel that her twice a year blood transfusions are not worth the risks associated with VAD). I feel like a broken record and state my case over and over again.

In the end Kourtney got her blood and feels so much better. She also had an MRI done to see if she had a buildup of Iron in her. Thanks to a handsome male nurse - who talked her into facing her fear of claustrophobia, she showed how brave, or how much of a normal teenager she is :)!!

The day before we went to Childrens' hospital visit we found out that Kourtney's teacher's aide has decided not to come back to work with Kourtney in the fall.  And the morning we left for the hospital we found out our caregiver Kim has decided to move on and go back to school. So this was weighing heavily on our minds. Fortunately, in my proactive approach, we had the psychologist come and talk with us and give us valuable suggestions in how we could proceed with Kourtney's education.

Of course this all happens just before the "big weekend" for Kourtney as well as for our family. The following video will be aired in church.  Todd and Kourtney will also be on the worship team and Kourtney will be singing a solo at the end of the service. I believe the message of Uncommon Joy is going to speak to many people so it is only natural that we are going to feel the attack on our lives! I just didn't really think it would have been three big blows at once. I am handling it better then expected. There were tears, however, I feel with the reprieve we have had from crisis that I am able to face this better. Plus I know that God will provide the right people . . . I just have to trust HIM!