Too Scary for Words

When I start this blog I have to start by saying what a trooper my little boy is! I know I tend to overstate how good he is but really I'm not. He amazes us with his attitude and his calmness. This awful disease my sweet Connor has is so scary to me because of how quickly it comes on and how fast he is completely taken over by whatever it manifests itself into that particular time. This last time was two days after Christmas and only a few days to our all important Bone Marrow Biopsy for him. I began to notice Friday afternoon some of the "signs" we see as he is getting another illness. He had a sore on his cheek and was not eating well that day and sleeping too much. That was Friday afternoon! Saturday morning he woke up and it was like he couldn't catch his breath and he was coughing and running a fever. I told Greg the night before I thought we might be headed to the doctor the next morning but we were running to the doctor. Our regular doctor told us it appeared to be Pneumonia but they thought we should go straight to the ER and get him admitted! She also said,"Don't go by home and pack anything, go straight there." A little frightening. After we got there the admitting nurse happened to be a good friend of ours from Jack's soccer and football team and that made me feel more at ease. She took such good care of us. After only a few minutes in the ER they told us we were definitely staying and they would work on admitting us. They hooked all the IV's and other monitors up and we sat and sat and sat. For a while they said his chest X-Ray looks OK, and so we think it could be asthma. We don't know where that would have come from. Then they would come back and say it was probably some type of viral lung thing and then it was a bacterial lung thing. We were very confused and scared because he appeared to be getting worse. Finally, late that evening after being there since 10 that morning we got to a room. Don't get too comfortable! The nurse couldn't figure out why we were in the isolation ward with lots of RSV kids if Connor had neutropenia. So, an hour later we got moved to a new room about 1/3 the size of the first room. These first two pictures are of Connor the first night. He couldn't sleep and layed out on his back against one of us all night. He cried, but not a loud cry, a scared little whine cry all night. It broke my heart. There was no bed so Greg and I traded off sleeping on the floor. Everyone keeps asking us why we both stayed and one didn't go home and rest. Honestly, because we were scared and he was really looking bad that first night. Neither of us wanted to leave him.

Around 5 a nurse came in and I told her I really thought his breathing was worse and he was grasping for air. She listened and said she would get his other nurse to check him. About an hour later he came in listened for maybe two seconds and said he thought he sounded OK. It happened to be the 20 minutes or so he had fallen asleep on Greg and Greg was also out. So, I sat for a few more minutes and got really upset. I woke Greg up and told him what happened and that I really thought we needed someone to listen to him. I guess about then was a shift change because the new two nurses came in and as soon as they hit the inside of the door they were asking if he had sounded like that for long! I was so relieved to have someone doing something other than just taking his vitals. They immediately got the doctor who in turn called the respiratory therapist and that room got hopping. Come to find out there had been a mix up between the ER and our new room and the breathing treatments he was receiving in the ER were not continued in our room all night long! It honestly could have been a really horrible mistake. So, we started with a 4 hour breathing treatment and then every 4 hours another one. Just after the first long one we could tell a difference. They got him started on tons of antibiotics and steroids to help his lungs recover.

This is Connor the second day. Already feeling better but couldn't go home because his breathing still wasn't under control. "Pops" as he calls them were the only thing we could get him to eat, but boy would he eat a ton of them. So, we kept giving them to him. Red, purple, orange any color he wanted.You can see almost as much down the front of his gowns as in his mouth.

We snuck Jack and Bailey into see him on the second day, they were really worried about him.

Finally, New Years Eve we got to take him home that afternoon. The other two kids were at Gretchen's so after we got Connor settled and into bed for the night, Greg and I went to sleep around 9! Happy New Year!!!

Where are we in the process of Connor's illness...

We had to put off the Bone Marrow Biopsy until the steroids are out of his system, because it would skew all the tests and give false amounts of white blood cells. We were going to call last week and reschedule it but then mommy got to go to the hospital too! It seems that while I was nursing my baby I caught something in the hospital and I am now home after 4 days in the hospital recovering from a bacterial infection in my lungs too.

Our prayer now is to keep Connor well long enough to do the biopsy and get him started on the right treatment to kick this disease!