From Hospital to now 2-27

We got home from the hospital about 6pm. We were tired, angry and confused. Connor was still getting sicker. I have not been able to get him to eat anything in a few days now and he is drinking very little but the diarrhea just keeps coming. Every diaper change now. I am not changing him because he is wet but because of the diarrhea. I don't remember the last real wet diaper he had. His breathing is getting worse. We can hear him wheezing across the room now. We got him settled down in his bed and tried to get everything put away and repack the things that need to be repacked "just in case".

Connor would not go to sleep. He was crankier than I ever remember him being. He did not go down to sleep until after 1am. He was up an hour or so later. His butt is raw from all the diarrhea and his wheezing and coughing is scaring me. All I can think of is that we brought him home from one hospital to have to take him back to another. By 5 am he had a fever of 102.4 and he was throwing up. There was nothing in his stomach really so the poor baby just sat there dry heaving. I did get him settled down and he fell back to sleep once I got the fever to go down a bit. I sent Joe to work figuring I could handle this. My plan was to play it by ear and see if we are going to our pediatrician's office tonight or much sooner depending on how he is doing.

I happened to think of something in the middle of the night while sitting with Connor. This test on Wednesday is a scan. The only way they can scan kids his age is to sedate them. No one has mentioned this though but I know from experience with the sedation until in the past and being an RN that they will NOT sedate a sick child. THE SCAN CAN'T HAPPEN! They knew that when they discharged us but went ahead and set it up anyway. We would have made that trip to the hospital twice and he would have had a shot all to have things called off at the last minute when we showed up to be sedated. I called the hospital to make sure and I told them first no one told me he was going to have to be sedated for this test and the only way I knew was because of past experience with his scans and that they made this appointment and discharged him knowing he wouldn't be able to get the test!!

I decided to make a bunch of phone calls while I had a few minutes and Connor was sleeping. I called the radiology dept and told them what was going on and we cancelled the appointment. We both decided that instead of rescheduling the appointment now we would wait till it looked like he was starting to get over everything and then reschedule because we have no idea how long he is going to be like this. Then I called Connor's neurologist, not the roving ones from the hospital but the one he sees in the office and has sent us to CHOP. She was seeing patients. I left a message for her that Connor was very sick. That we almost ended up taking him into the ER last night (I didn't mention that we were seriously considering this for awhile) and that the MIBG scan was cancelled because they couldn't sedate him. I also put in the message that the dr's at the hospital discharged him knowing how sick he was and made the appointment knowing he wouldn't be able to have the scan. Then I called our pediatrician. She has been great and behind us from day 1. This isn't the dr's that we get when we take him in for a sick visit this is his regular dr who knows us and knows Connor. She has been on vacation and I knew this but I was hoping she would check her messages. The office told me she won't be checking them. I decided to leave a message anyway. So, I let her know briefly what has gone on. I know I will here from her Monday morning. While on the phone with the office I made a sick appointment for Connor for the evening.

By 12pm I had to call the pediatrician and get an earlier appointment. His diarrhea was still real bad and his diaper rash looks like an open sore. His breathing is bad. I couldn't wait until 5 at night. Joe came home and we took him right in. At this point things have not turned to pneumonia yet. The Dr gave us great advice for the diaper rash and told us some things to try to keep him hydrated. He told us that he thinks this is all just a virus (which we already suspected). One of the things he suggested to give Connor was sherbert. It would hydrate him and give him the calories he isn't getting anywhere else. Well, it was a great idea but Connor wouldn't touch it. So far all we have been able to get him to eat is banana's. Not the baby banana's which are fortified with vitamins and stuff but the real banana's.

As of today, we have not heard from Connor's neurologist. You would think I would have heard from her for no other reason than he didn't get the test done. I am real angry about this. He is her patient and she will not return my messages? I am starting to look for a different neurologist and hospital to take him to. Maybe they will get to the bottom of things. Some one has to!!

He is still sick and from the sound of Connor's breathing, the diarrhea, the diaper rash and everything else we are going to be going back to the doctor in the next day or 2. This has all made his walking worse. He won't even try walking right now. He will sit in my lap, sit in his bed or stand up there. He will also sit in his activity center but that is it. I need to weigh him and see if he has lost any weight since he was weighed in the hospital. If he has lost weight then I have a feeling he is going to end up back in the hospital sooner rather than later.

I will try to keep this post updated as much as possible. If there are any new developments I will post it as soon as I can get to it. If nothing else I will try to post at a minimum of once a week and more if the situation calls for it. Keep the prayers going please. And, if anyone has any ideas, suggestions, hospital suggestions. dr suggestions ANYTHING please post it in the comments. We need all the help we can get.