Struggling

This week has been such a challenge.  A lot of crying, all around.  A lot of hand-wringing and nausea and inability to sleep.  This past weekend, Daniel and I had a getaway to our own house, including a date night, and my mom stayed with Caleb and it was wonderful (as wonderful as those nights can be when your son is in the hospital waiting for a heart).  Then on Monday morning the hospital called and I thought it must be The Call, but it wasn't that we'd gotten a heart... it was that Caleb had torn off the dressing of his picc line and would have to get a new picc line placed.  And they were not comfortable with the idea of putting Caleb to sleep, since the last time he was under anesthesia, his heart stopped... so they were going to have to do the procedure while he was awake.  Oh, and by the way, he has lost weight again and we're going to have to take some kind of action about that today after the procedure.  So we're throwing on clothes and rushing back to the hospital and I walk in the door exactly 2 minutes before they take Caleb back.  And it was AWFUL... they gave him a sedative to help calm him but he screamed and fought it for the entire hour and a half while he had to be tied down to the table.  It was  traumatic for him, to say the least.  They ended up giving him a second dose of the sedative and that turned him into a crazy person, yelling, crying, throwing things.  It was like my sweet baby went in to the room and the Incredible Hulk came out.  Later that day, the doctor came in and said that the time had come when we couldn't continue to let Caleb eat like a bird.  We decided to go with him getting nutrition in his IV at night while he sleeps.  After the day we'd had, I was like "whatever, just do whatever you think you need to".

The next day, yesterday, Caleb seemed to be ok mood-wise, but woke up with a swollen face and belly.  And throughout the day, we realized his heart rate and breathing rate were high.  He seemed exhausted, which made sense after the day he'd had before.  Our nurse was really concerned about him and the docs were keeping a close eye, hoping that his body was just adjusting from the new IV fluids.  All day, we were nervous wrecks... what's wrong with him?  Is he ok?  Is this just how his body reacts to this new IV of nutrition?  We just hoped that by the next morning he would be back to "normal".

This morning I sat down with our nurse and she explained that the doctors are still hoping that Caleb's body is just adjusting to all the additional fluid but they don't know if that's what's going on or not.  It's hard to know when I should be worried... because the doctors can't say, "oh, it's nothing, he's fine".  Because he's not fine, he's a really sick kid.  His heart won't get better, it'll keep getting worse and even though his decline is gradual, it still scares the crap out of me.  Because I know kids die every year waiting for the heart that never comes.  I'm so tired of watching him get sicker and sicker and knowing that nothing is going to change that unless he gets a new heart.  He's got to get a heart.  

Today I want to ask you all to pray with extra faith and belief.  We're praying, praying, praying that God would move in the hearts and minds of any family that is faced with the choice of donating their own child's heart, that they would say yes.  Pray for Caleb today!  Pray that God would provide for him.  Pray that Daniel and I would keep going with strength and perseverance.  Pray!