Our Fight

On Saturday we were waiting for therapy to come and get started and for the doctors to come in and tell us what they were going to do that day. The roving neuro dr's came around and decided that Connor did not need to stay at the hospital. We could come back for the scan. Even though it is a 3-4 hour round trip depending on traffic and we would have to come back 2x for this test. Even though Connor was sicker, they decided that to keep him in the hospital with other sick kids wouldn't be good. We were still waiting for the final consult and tests that needed to be run from the metabolic team. We were still waiting for occupational and physical therapy to even evaluate him let alone start therapy. We hadn't seen the social worker to even start setting up his therapies at home. I was livid. I talked till I was blue in the face and the dr just kept talking over me and telling me that this wasn't the place for Connor.

Now don't get me wrong. I wanted to bring Connor home just like any other mother but he was not any better neurologically, we didn't even have a diagnosis yet. He was getting sicker and that kept getting ignored. I was so upset. I talked to the nurse as soon as I could calm down and told her what I thought and that the last time we were here we let the dr's talk us out of staying and here we are a month later back in and worse than when we started. No one would talk to me about the treatments that were brought up to us last time we were in. They weren't ready to try them last time but I was more than ready this time. I hadn't even been able to get anyone to give me the results of his last MRI which I know they had from the day it was done. The nurse went out and when she came back she asked if the dr had been in to talk to us. We said no. She then told us that if we were not comfortable going home then we can stay. They were not going to kick us out. We were staying until at least Wednesday now. I had time to regroup and try to figure out what these doctors were trying to do because nothing made sense anymore.

On Sunday Joe was planning on going home and getting a few things and see our daughter for a little while. I saw one of Connor's dr's and we talked about the treatments and she was going to talk to the higher dr about it on rounds. I also found out that the MRI hadn't changed any. We talked about us going home after the scan and I told her I understood that they couldn't keep us there while waiting weeks for all the tests to come back but at least we would get some of the therapy started, get the social worker involved to set things up and not have to drag a sick baby 3 hrs (I am being hopeful) round trip 2x in 3 days plus the trip home. I went downstairs for a few minutes before Joe left and I get a call on my cell phone. It was Joe and he tells me that the roving neuros are in Connor's room and the head one got nasty and wanted to know why we were still there. We were supposed to leave yesterday. Joe told them that I was afraid that if Connor left we are going to go another month with nothing getting done and that he is sicker and we are going to need to come back on Tuesday for a shot and Wednesday for the scan anyway. The dr says "I don't understand what you are saying" I was shaking all the way up to the floor. Perfect example of too many dr's not knowing what anyone is doing and getting so important (I guess is the word) that they don't think about the patient. We are black and white cases not real people with real lives and real hardships.

I tried I honestly did but I could not get this guy to care. I would have said understand but I am pretty sure he understood what he wanted to and just didn't care about the rest. I told him I took him home a month ago and here we are again getting kicked out with Connor worse. This guy has the nerve to tell me that I very clearly told him that Connor was no worse than when he was here a month ago. I have never, never said that. I have been yelling to anyone who will listen that he is getting worse with more symptoms coming on and we need help. I got loud (I didn't yell but looking back now I should have) and told him that I said his WALKING was no worse but everything else is getting worse. For God sakes the only way his walking can get worse at this point is for him to not walk at all!!!!! I fought the tears I really did. I told them that I will take my son him because I can't keep fighting with them and getting no where. He says It's not about fighting we all want whats best for Connor. (somehow I don't think his need for that comes close to my need for it). Then he tells us that instead of weeks we are looking at months before we will see some improvement. I am not waiting months to see if he gets better on his own from something they "think he may have".

They won't do the treatments until all the tests are back. Even though they say they don't think any of them are going to come up positive and they all think it is cerebelitis and talked about treatment the last time but just wanted to give him a little more time. Now they are talking weeks before we can even talk about it. This all happened at 10am. We did not get the final discharge to go home until after 4. By now I have managed to get only 2 bottles down Connor since the night before and he is wheezing and very cranky.(I don't know if I mentioned earlier or not that Connor will not drink out of a sippy anymore and will only take a bottle of milk to drink). Then the dr's asked us if it was a problem with money for the trips and maybe the social worker would be able to help us. I tried to explain that it is not an issue of the money (it doesn't help with all these trips but that was the least of my concerns at this point) but that I had 2 chronic pain conditions among other things and the driving and any stress makes me worse and Connor is sick and you have us driving back and forth like it is around the block. Then they tell us we need to make an appointment with an ophthalmologist at CHOP and get a consult done that week along with seeing our pediatrician within a week!!! What is better for Connor leaving him where he is already and getting it all taken care of or sending him on a 3 hour round trip ride 3 times in one week and throw in a trip to his pediatrician?