I am at the end ….
Sorry I have not updated since last week. Well Tuesday morning daddy and I got to the hospital at 8am. A was sitting up in his wheelchair watching TV. He looked good but then I noticed he didn’t have an IV!!!! The nurse told me it had come out during the night. UGH I was SOOOO mad!
His ped came in about 8:30am and told me that he refused to poke A for the 18th time. I asked him to look at the xray from in emerg so he did so. Told me he did NOT see pneumonia. WHAT!? My little man got 17 pokes for nothing??? So he took me to show me all of his xrays. I of course cannot tell pneumonia but it was interesting. So I then asked what the radiologist said. He said “possible” pneumonia. Okay so I have one saying yes, definite pneumonia, one saying no and one saying possible. Am I the only one that is confused on how this happens???
Anyways I was a bit frustrated that he put A on oral meds and said we could go home. So he told us to wait the day then and see how he was around 5pm when he would call. Okay fine. Grandma came up and daddy and left for a while.
At 3:30pm I returned and my mom said he had a pretty good day. He was acting tired so we figured we would try him down for a nap since we still had a while to wait for the doctor. Well that is when he started his blue episodes. It was about 20 minutes with sats below 60. The nurse on went and called the doctor. He told her that he was not doing any further investigations. UGH!!!! You could tell something was wrong because everytime that A got upset his heartrate would fly up. The doc told her that if he did it again before 5pm then he couldn’t go home. I was just so frustrated and pissed off that I packed him up and we headed home.
Monday night A is sitting with daddy on the couch. He starts to get upset and goes off colour. Well all of a sudden he cries like something REALLY hurts, goes straight stiff and boom he isn’t breathing. When he finally did take a big breath he passed out. J laid him on the floor about ten minutes later and he didn’t move. ANYONE that knows A knows that for one he doesn’t go to sleep on you like that and two if you move him he wakes up.
Well at 11pm I went to give him his med and he woke up. So we took him up to bed. What does he do?? The same thing!!!!! Except this time when he started breathing he didn’t pass out, he just continued to fuss and cry.
Tuesday morning I was livid to say the least. I immediately emailed his team at Sick Kids about what went on and called his doctor here. I was bawling my eyes out when I called the doctor and told the secretary what went on. She said she would call me back. When she did she said that he wanted to see A the next day to discuss home oxygen. WHAT!?!? That is NOT the answer. And we already have home oxygen!!!!
The nurse practitioner called me from Sick Kids. Said that she talked to his doctor and he wanted to see A in clinic next Tuesday. HUH? I am telling you my child stopped breathing TWICE last night and you want to see him next week??? I told her that wasn’t good enough. That I wanted something done NOW. She said she would go talk to him and call me back. When she did, she said that is the best they could do. She also told me that if things were that bad last night I would have called 911. Really?! For what?! To go through the same drama and have nothing come out of it?? I called 911 when he wasn’t breathing and it was like I was on a soap opera and we were sent home that SAME day with NO answers and NOTHING fixed.
By this point I am really really angry. I decided with the support and advice of a group of moms that I talk to, to take things further. I talk to A LOT of moms that have kids with all kinds of issues and all agreed and cannot believe that nothing is done. One mom even told me that if her son had sats as low as A she would expect a helicopter to land at her house.
I had another mom tell me that she thinks that the doctors don’t do anything because A is disabled and it doesn’t matter. (The low oxygen levels). Sadly I agree. If A was not disabled and he was doing what he was doing the doctors would not let it go on without investigating WHY it was happening.
I sat here Monday night after all this and wondered if I was just a crazy mom who wanted too much from doctors. If I was taking things too far and really they weren’t that serious. But I realized that NO I am not any of these. What A does is NOT okay and I have absolute reason to be worried.
So I took it upon myself to email about four news stations and about eight doctors/hospitals within the United States. I have heard from Global News so we will see where that goes….hopefully somewhere.
I have thought of this for a long time but I was so worried that it might make things here “difficult” or “worse” for A but I realize now that it cannot get any worse for him. No one does anything. These doctors and hospitals are supposed to take care of him. And the care he is receiving is disgusting to say the least and they need to be held accountable for this.
Anyways, that was Wednesday. I heard from Global Friday. A has continued with his blue episodes, however none as bad as Monday night but still not right. I just hope that ONE DAY SOON I find the right person who wants to help my little man. How could you not want to help him???