The surgery scheduler let us know that Claire needs to check in to the hospital tomorrow morning at 7:30. With the time confirmed, I let Claire know that she needs to go to the hospital tomorrow.
The first words out of her mouth were, "NO pokes?"
It was a question. A hopeful, wishful question. But, there will be pokes and I had to tell her, and she wasn't happy.
"Pokes, sad. Hospital, sad. Stay home, mommy."
In case you aren't up on your Chinglish, that translates to the fact that she doesn't like having blood drawn or IV's or going to the hospital. She wants to stay home with mommy.
I assured her that I would go to the hospital with her, and Jenny will come with us, too. Then I did my best to explain how they will use a "bubble-fish" (Claire's name for the mask on her nebulizer) to help her feel sleepy. She will take a little rest at the hospital. While she is sleeping, the doctor will look inside her neck with a teeny-tiny little camera. They will do the pokes to get some blood while she is sleeping so there will be no hurt. When she wakes up, she will find a band aid on the place where they did a poke.
She wanted to know if she would come home when she wakes up. I waffled a little on this one. I just don't know. It depends on what the doctor finds, and what he decides to do. This is an "exploratory" surgery to see what is going on in the esophagus. If there is something simple like a cyst, or minor scarring, it will be taken care of right away. If it is minor, she comes home. If it is just a little complicated, she may stay overnight. If anything is more complicated, we will schedule for another day to take care of things. So I skirted the coming home question by saying I will stay with her until the doctor says she is ready to go home.
The blood draws are for the gastroenterologist. He needs more tests to figure out what exactly is going on with Claire's liver. We know that it is enlarged and blood tests show "abnormalities," but we don't know exactly what that means. Since her little veins have had more than their share of "pokes," they tend to yield only a tiny bit of blood before the supply "dries up." (My apologies to any medical type folks reading. I'm used to translating events into the simplest language, and I don't know enough about medical terms to sound educated in this area.) Getting enough blood for tests on a regular basis has become a very frustrating experience. I'm glad they can do this one while Claire is totally unaware.
She is just so tired of doing this medical thing. I can't blame her. We went through her medical records and counted the days she has spent in the hospital. Miss Claire has been hospitalized for a total of 4 years! That is a lot for anyone. It is way too much for an 8 year old.
We are praying that all the doctors will be able to figure out what is going on in relation to Claire's breathing difficulties and with her liver. We want to be able to resolve the problems so that Claire can spend some time at home learning how to be a regular little girl. One who doesn't have to worry about pokes for a good long while. Won't you pray with us?
|Claire would rather count scoops of ice cream on her giant ice cream cone, not add up doctor and hospital visits.|