Long Day

Emma woke up with a fever this morning and she just wasn't feeling well. Her breathing was abnormal and her stomach was larger and harder than usual. The doctors came in during their rounds and said that they spent a long time discussing Emma. They decided that in order to rule out infection in her abdomen or chest we needed to do a CT scan. Of course this required that Emma not eat or drink anything until the test. It is the CT departments policy that she has a peripheral IV in order to put contrast in the IV because if they put it in her picc line it could erupt. I was so upset about this because that meant that they would have to stick her again and they have already had so much trouble trying to find veins that were big enough.

The nurses said that the doctor requested they try 3 times for the IV before giving up. I pleaded with the nurses to just say they tried, so they wouldn't have to poke her. It is so hard to sit and watch them do all of this stuff to my baby day after day and not be able to stop them. I know they are saving her life, but she deserves a day off!! The nurses tried twice before calling it quits, and they decided to give Emma contrast orally. This was just a clear liquid that we had to give her every 20 minutes for an hour. Emma didn't like this either, but we were able to get it down. Before being diagnosed she took her medicine so well, but now she rejects almost everything we try to put in her mouth because she has had so many bad tasting medicines.

They gave her some medicine to relax her so she wouldn't move during the scan. This knocked her out for at least 2 hours and gave her a chance to get some good sleep. The doctors came in shortly after and said that the results looked good, and they didn't see anything abnormal. There was a little bit of fluid in the left lung and some in the stomach, but that sometimes we have fluid there.

Because Emma has been running fevers she has been losing platelets like crazy. She has had a platelet transfusion everyday for the last 4 days. They finally decided to do a cross match to try to find her an exact match for platelets. They think that her body may be rejecting the platelets. After her transfusion yesterday they seemed to stay somewhat higher so that is a good sign. I guess we will see tomorrow what her count is. She also received a blood transfusion today which is actually pretty routine around here.

Tonight as we were winding down we noticed that Emma's stomach was a lot larger than before. The on call doctor came and checked her out, but didn't seem too alarmed. After about another hour we noticed that it was even larger. We called for the doctor again, and she decided to give her the medicine they had scheduled for later in the evening. This would take the fluid from the stomach and distribute it to the right places in the body. Then they will give her more lasiks to get rid of any fluid that is not needed. It sure seems like they have a medicine for just about anything. Emma is considered a "hard" patient because she has got a list of medicines 3 pages long! It's hard to believe that her little body can handle everything.

It is about 12:30 a.m. and Jonny and I are watching Emma sleep. We want to make sure that her stomach goes down before we sleep. They have hooked her up to the monitors to make sure her oxygen level is well along with her heart rate and breathing. Her heart rate was up to over 200 most of the day, so we are glad to see it has gone down. We are getting very restless here at the hospital. I can't wait to go home and I know Emma would just love it. I'm so tired of being woken up 3 times in the middle of the night, and then early in the morning. And if I'm tired of it, I know Emma definetly is!! We were also told that we shouldn't plan when we will be in and out of the hospital. Instead of being home 2 weeks like I thought, we may only get to go home for 2 days. They told me to start writing in pencil on my planner, and buy a big eraser. This is extremely hard for me because I am such a planner. God's plans don't always coincide with mine, but his always work out better : )

I still can't believe all of this is happening, but I have accepted the fact that Emma has Leukemia. What I am still having a hard time accepting is the fact that she has to suffer. I miss her smile and laugh. I miss her growling and want to play. I pray everyday that God just take away the pain so she can have a good day. I don't understand why, but I know God is faithful. He has answered every prayer, and I know he will continue to do so.

Please pray specifically for:
Emma's stomach to soften
The side effects from the chemo to wear off so she can feel better and play and be happy
Restful nights of sleep for Emma
Our time at home, we would like more than 2 days
A complete healing