Hospital stay round 2

Our hospital stay was one of frustration to say the least. I know that there is alot to be said for having a think tank of doctors to work on your child & try to figure things out. The problems come in when they all plan things one way and they don't communicate any of those thoughts to the other. All you have then is chaos. One Dr would come in & say one things and the next would come in & say they were going to do something else. No one talked to the other or to us. Plans were made without telling us & then things that we knew about were cancelled without telling us. It is one of the most frustrating things about all of this. That and still not having a definitive diagnosis.

We were told we would be in until Wednesday and that was the earliest we would get out. So we were planning on flying my mother-in-law in from Texas so that our 7 yr old could come home and go to school. She had been staying at my mom's and there was no way my mom could get her back and forth to school. Plans changed from one second to the next while we were in the hospital. Connor kept getting sicker from a virus (he was diagnosed with RSV a respiratory virus while we were in there) and diarrhea that the dr's kept ignoring because it didn't have anything to do with his neurological problems. Although any virus or illness can make all of this worse. My mother-in-law God Bless her heart is on stand by for the next upheaval. She is ready to fly here if/ when we need her.

When Connor was admitted he was supposed to have a spinal tap the next day. They didn't know the time because he has to go through the sedation unit and they were hoping for a cancellation due to the weather (we had a bad storm which closed all the schools in Phili). Because they didn't know the time that all this was going to happen Connor was not allowed to have anything to eat or drink. It was a miserable 6 or 7 hours (his last bottle was the night before and he hadn't eaten anything since breakfast the day before and he didn't eat a lot then). We finally got the time for his test and we had a half hour to go. Then the roving neurologists (that is what I call all the neuro dr's that come crowding into Connor's room everyday) come in and say in passing that they cancelled his spinal tap. I was pissed that they put him through all of that and then cancel it at the last minute. The head dr decided that Connor didn't need the tap (even though I was told they needed to look for changes and it was the only way to do some of the metabolic tests that they needed). Now they are changing everything!

The next they decided to refer him to the metabolic team and see if there was a test that the roving neuro docs didn't think of that could help with this puzzle. Then we were told that they were going to do something called an MIBG scan. It is a nuclear medicine scan and he will be injected with an radioactive isotope and the next day he will get the scan to see if there were any "hot spots". I had never heard of this test but I found out as soon as we got home. They are looking for cancer. Neuroblastoma to be precise. I was devastated. They also were going to finally get him rehab. He was evaluated and started physical, occupational and speech therapy. They were going to give him all 3 therapies 7 days a week while he was inpatient. After we were discharged the social worker was going to set him up with the therapy at home with the early intervention program.

This was all Thursday and Friday. I was happy he was starting therapy to try to stop the regression for now even if it wasn't going to get us where we should be yet at least it was something. We had been evaluated by speech therapy by the end of Friday with the others to come in the next day. In the mean time Connor has been getting sicker with the diarrhea, not eating, the coughing and wheezing. I knew he was getting bad but every time we tried to get them to address these things we were blown off. Just like we have been blown off about the way his face has been getting really puffy. They look (or pretend to look) and then go on to whatever else they had on their mind.

This is the point that I start to lose it and the fight begins. That I will save for the next post.