Yesterday was rough. Bobby's heartrate and blood pressure were up, he also had a slight fever. One thought that they had was that he may have fluid around his heart. They other thought was that he was in pain and/or not tolerating the fluid in his lungs. He also stopped eating and drinking so he had IV fluids all day. But there is a fine line with IV fluids and keeping it all balanced. We don't want him to hold on to the fluid, because that is what we are trying to get rid of. They also do want him to get dehydrated. It is hard to understand at times!
I felt so optomistic about the day. Bobby's numbers looked so much better-heartrate was in the 90s and oxygen saturations were 92-94. He also woke up without an IV, and the doctors said that he was fine without one as long as he kept drinking. All day I bribed him into drinking juice boxes. I told him that if he didn't want another boo-boo, he had to drink. It seemed to work well, as he drank 3 juice boxes...until they made a lier out of me. During rounds, which were really late, they decided that since his lungs looked hazier, he needed to be back on IV lasix (diuretic). His blood counts aren't great either and they are going to do a blood transfusion tonight, hoping that he will perk up. An echo revealed that his heart function is good and there is barely, if any, fluid around his heart. Well, the hard part emotionally was that he had to get blood drawn 2 times, and both times they had to stick him twice just to get it (which involved moving the needle around in his arm/hand). Then they had to do the IV, which also required 2 sticks. It was so brutal. All of his veins in his arms and hands are completely shot. He wore himself out from crying and fighting so hard. For whatever reason he wants me to do everything...he says, "mommy do it." He also started saying, "It's not fair" and he looks at me with tears in his eyes saying "I don't want any boo-boos."
The highlight of the day was our trip outside. Bobby insisted on taking the shopping cart outside. It was so cute to see him pushing it around on the sidewalk. He was happy to go up and down the elevators, but flipped out when he got back to the sixth floor.
OK, that is the update for today. We sure could use those prayers!
Rachael
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Praying like crazy for a really good day today! I know how you feel about the sticks...Hope is a hard stick and I cry with her when they try to find a vein to use. I think that breaks my heart more than most of the stuff they do because they have to try so many times and she cries the whole time. You are constantly in my thoughts and prayers.
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