Sleep-Filled Days and Sleepless Nights

10/14/11:  9:21 AM

For the most part, yesterday was uneventful. Davis slept most the day. The doctors would check in periodically and update us on what they knew. They believe the infection is the beginning of an ear infection. His right ear is red and there is a bit of fluid there, but no real infection has started. They are still growing cultures as well. 

In order for Davis to go home, he can not be symptomatic nor can his counts decrease. Neither of those two things are happening right now. Davis ran fever up until early this morning. We have to stay in the hospital for 24 hours after a fever breaks. We are hoping that today brings no more fevers. Davis' ANC was 0 when he was admitted, 43 yesterday, and 0 again today. His red blood cells were over 8 yesterday, and today they are 7.4. If he struggles with a headache today, he will receive a blood transfusion. In order to leave, Davis' ANC has to jump into the triple digits and continue to increase with no fluctuation. We are obviously not there yet, and there are no plans for us to leave. We will have to stay because his body can't fight an infection without help.

Davis is insanely homesick. He cried for two hours (almost until midnight) because he wanted to go home. He hates it here, and he acts out when he feels he has no control. Last night, he negotiated and argued with the floor doc about taking his meds. He kept saying to the doc, "I will take my meds if you let me get out of here." The doctor would respond, "You can not leave yet, but you are not going to get to leave if we can't trust you to take your medication." And then Davis would spout, "Well then, I am never leaving, because I am not taking the medicine." That went on forever. Our typical approach, the you-are-going-to-do-this-because-we-say-so, doesn't work anymore. Some days it seems like nothing does. He kept telling me over and over, "Mom, you have to get me out of here. Please, Mom. I am going to run out of here and go home and go to school tomorrow." Heart-breaking. Davis did take all but one medication before they gave him some medication to help with nausea. The bonus is that the nausea medication also sedates him. He was so worked up; sleep was such a blessing.

Davis continues to struggle with severe headaches, dizziness, and nausea. He rarely gets out of bed. It feels better to lie flat. He complains of headache when he sits up. He ate nothing yesterday, but did manage to drink 5 or so ounces of water.  The docs are not worried about the non-existent appetite, but he will have to be eating and drinking to be able to leave.

So if the cultures determine nothing, we are sticking with the ear infection diagnosis. I am not truly convinced that that is what it is, but I am not a doctor. I really have underestimated the importance of an immune system. It reminds me of jumping out of an airplane without a parachute. It is always going to turn out badly if you don't have something helping you out. In the jumper's case, a parachute. In Davis's case, an immune system - or doctors, hospitals, and IV meds - to help fight infection.

The doctors determine a goal everyday for Davis to accomplish. Today's goal is to drink and use the bathroom on his own. Oh the things we take for granted with our healthy children.

We finally have our own room. I was able to sleep on a couch last night. It sure beat the chairs that I have been sleeping in the last couple of nights. Thankfully, we have not seen many of the families with whom we have built friendships. Sadly, the floor is full of new faces. There are a couple of precious, little ones wobbling about. They are maybe 18 months to 2 years at best. Yesterday, the music therapy crew brought instruments, and there was a little dance party in the hall.  Those babies danced and beat drums for nearly an hour. It was refreshing and amusing. I don't know their names or their stories, but my heart hurts that they are here.

We want to thank all those who have texted or called and sent words of encouragement and prayers our way. You are far too thoughtful. Our most immediate prayers are for this illness to be resolved, for Davis to have peace and begin eating and drinking consistently again. And of course, we always pray against side effects and for his forever healing. 

Looking forward to and hoping for a peaceful day.

We will keep you posted.