Monday, August 10, 2009


We have had a frustrating day at the hospital. But out of all my pants, I got my patience pants on. We were first put in a room with a poor kid we have met before. If you look back in my blog and read about the infusion center, this kid is in it. He was the once that screamed at the top of his lungs "The baby is crying!". As soon as we walked in and saw the poor little guy clutching a pink basin, and heard his voice I knew. I knew I had seen this kid before. His mother is super sweet. But right off Gary and Lucas were not a good match. Lucas has tumors in his spine. For whatever reason it is messing with his brain. He hallucinates. Loudly. Gary was already having a lot of anxiety walking into our room knowing the IV team would follow. Lucas began frantically screaming that Swipper (cartoon character from Dora the Explorer) was coming out of the TV to get him. Over and over and over again. Gary did not understand and just cryed. I could make him understand that Lucas is sick and Swipper isn't really in the room. We sat there for 1/2 hour waiting for our nurse. Lucas however was in much greater need as his hallucination switched from the Swipper to The Grinch. Gary and I went to the play room until they could figure out what to do. We came back for a diaper change to find that Lucas had calmed down. The only problem was that Gary began repeating Lucas everytime he called for his Mom. Again, trying to convince a two year that is not ok is impossible. Hours go by and we waited and waited for the IV team. I did my hot bath trick and wrapping Gary's arms in warm blankets. It didn't work this time :(. It was on the fourth poke they finally got it. We then got word that they would move us. The next problem was that the doctor did not sign off on all of Gary's medications so pharmacy would not be sending them over tonight. I just stare at them. They moved us downstairs to a room with a child is around the same age as Gary. Gotta love hospitals. I know its not the Hilton, but if we are not running meds I could at least be in my own bed. Here is to a better tomorrow! Swallow test is at 9am. Praying that NG tube comes out.

1 comment:

  1. OK so it is not exactly what you wanted, but at least they weren't worse! I hate hospitals and I always have. I am so sorry that your experiences there have been miserable. Gary not wanting things and then wanting it and all of the indecisiveness is probably the steroids. That is what Kya does especially after her infusions. It is maddening! Even she will finally just cry and say I not know what I want! I feel sorry for them.

    I hope that things will get better and that he gets his NG tube out soon. I can only imagine dealing with that also. You are such a strong person and you are a true mama tiger!

    As far as Why? I had a lot of whys. (I will send you an email and we will discuss that.) But, I will be totally honest and admit that I said why? God has a way of putting things in your life and humbling you when you need it and I guess that is why.

    We will continue to pray for you, your family, and especially Gary! Kya was so cute last night. Kaysa was very tired from her first day of school (she kept dozing during supper and throughout her prayer). When she finished her prayer with Amen Kya said you forgot Gary! So Kaysa said another prayer just for him and all of the kids with this disease! It was to sweet!

    Well, I better get busy! We are praying for you guys! Hang in there Mama Tiger!