Feb 21, 2008

Connor was due to be at the hospital's sedation clinic at 2:30 for a 3:30 scan. I called our neuro dr earlier that morning because of some new symptoms he was having. They weren't a big deal by them selves but put together they were bothering me. Things like a fever over the weekend (it seems to be a big deal among the dr's if he has one but no one will tell me why), he started to choke when we feed him (he will choke of the food if it has any texture, bottles at times and even his own drool. He was never a baby to choke. even as an infant when alot of babies do), he is holding his head like he is in pain at times and when that happens it gets alot worse if we try to lay him down, he also is much more irritable. For Connor that is usually putting him where most babies get when they have a cold. He is just not an irritable baby and never has been. Which has been a big problem with getting the dr's to listen to us. He had pneumonia with a 102.5 fever and when we took him to the dr's they acted like I was crazy. He was talking and flirting and smiling. He even let the dr hold him. I don't really think they believed me until they listened to his lungs. After that the dr just kept saying I can't believe him. He is such a good baby!! She kept coming back to hold him. So, having him so easy going has been a big barrier in trying to get the dr's to believe us and diagnose him.

Anyway, with the combination of symptoms I called our neuro dr and she called back and wanted us in the ER at Children's Hospital of Phili (CHOP). She called us at 10 am and told us to pack a bag or 2 "just in case". We were on the road in less than 1/2 hour. We also had an accident about a mile or 2 later. Not our fault, no one hurt and not much damage but did slow us down. We got to CHOP and the er finally called us in and the neuro team checked him out. No one wanted the MRI to get cancelled so we were rushed. One dr examined him with Joe staying with Connor and 3 more dr's "interviewed" me to get the story and facts. We were then sent off to the sedation clinic with a stop at the lab to get the vials we needed for the blood work. They were going to do it all when they started the iv so that he didn't have to keep getting stuck. We got to the sedation unit at 2:45 15 min past when they wanted us. They then told us we needed to go register. I explained that we were just in the er and I was told that because the ER discharged us we needed to re register. We went to do that and at the registration desk the lady calls over and asks if it is OK to still register us because we were late (now 2:50). I was seconds from blowing now. I was close before and then this. If we were told no it would not have been a pretty site. I looked around to say something to Joe about it and he was no where to be found. He just disappeared!!! Once he knew that things were getting out of control and I was ready to "go off" as my kids say he took off.

We got through registration, were then sent to the waiting room. Someone came out and got us and took us back to the sedation clinic and they tried to send us back to the waiting room because they weren't ready for us and they were running behind. The girl that brought us back was told to bring us back. This is a recurring theme throughout our stay. No one knows what the others are doing and too many people have too many opinions and no one follows through.

Long story short (kind of long already don't you think). Connor got his MRI (I am told that it was normal but it will be a few weeks before I get the results to see for myself), he did not get the blood drawn because of more miscommunication, our Neuro dr's lost us, found us and admitted us (after the sedation unit almost discharged us but I stopped that until they checked to see if Neuro wanted us admitted). The rest of the hospital story will have to wait till tomorrow because I am exhausted. I having been fighting dr's for days now and watching my son get sicker while we just keep "waiting". I will fill you all in more tomorrow but for now Connor is home and asleep in his own bed finally (he didn't go out till after 1am). He is sicker now too and I am worried that he is going to end up in another hospital for this RSV that he has now.

Joe and I wanted everyone to know how much we appreciate your prayers and well wishes through out this whole nightmare. Connor can use all the prayer he can get right now. Thank you all for caring so much.