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???
Well my little man is admitted yet again with pneumonia. Here is the update I did for my one group:
Well I got to emerg and when we got into triage they immediately hooked A up to a monitor. He was saying 36. The triage nurse just about jumped out of her clothes and within minutes we were in the back.
Chest x ray and bloodwork was done (which by the way took SIX pokes!)
At 5pm I kept telling them that I needed to go home at some point to get his food. They were telling me to just give him apple juice or milk!!!!!!
Anyways, they came back and told me he has pneumonia in the lower left lobe.
This is when they started with an IV. After me bawling my eyes out because I HATE when he is admitted. Anyways after seven tries I was ready to BLOW UP!
I told them I was leaving to get his food b/c at this time it was after 6pm.
Got back and he was done with the IVs after two more tries. So it took them 9 tries! You should see his poor arms!!!!!!!
Well we get up to the floor and guess what? A nurse untaped his IV to check it and pulled it out!!!! So once again my poor exhausted boy was taken into the room again. Three more goes.
I am home to sleep. There are two nurses on tonight and they only have him and one other boy.
I just can’t believe this is happening AGAIN!
Please pray that A can get through this without being intubated like in August.
Well it was a crazy couple of days down in Toronto at Sick Kids. A, daddy and I went down on Wednesday night to save us the drive Thursday morning as A had to be at the hospital for 7am. We got down there about 8:30pm and went and checked in our room and then headed out to get a bite to eat. WOW, I cannot believe how many sketchy people are around down there!
After having dinner at the Golden Griddle we went back to our room to try and get some sleep before having to be up at 5:30am. A didn’t go to sleep until about midnight and I didn’t sleep very well anyways. Strange to be right beside him sleeping!
Thursday morning we headed out at 6am to walk over to Sick Kids. We weren’t sure how far it was exactly, but it only ended up being about ten minutes which was nice. I was very frustrated from the beginning of our stay with Sick Kids. We had taken him down to MRI and then they decided that they needed to do an x-ray to make sure that there was no suture inside his stomach from his tube. I told them that there wasn’t one and they had to be 100% sure just in case as metal cannot go into MRI. This was something that should have been checked before the day of the MRI. Anyhow it all worked out well and he was then hooked up and put to sleep. We were then asked to leave the room so that they could get the IV in and just in case they had to put a tube in.
J and I headed back to the hotel to check out and then grabbed some breakfast before heading back to the hospital. At 11am we were called in and went back to see him in recovery. He looked pretty good considering he had just woken up from an anesthetic. (I was pretty emotional waiting for him to come out of the MRI thinking that the next time we will be there will be for the surgery. I can’t even describe how I feel about it but I know that the day we are there for that there are going to be a lot of tears!)
They had him on six litres of oxygen but it came down to about a litre within an hour. He was then moved up to the constant care room on the fifth floor. The nurses and ENT resident were very concerned about how A drops his oxygen sats and how low he goes. It is starting to really bother me as I know that it isn’t normal and something should be done to figure it out. On the “okay” side of this, the ENT resident did say that because A has always been like this with his sats that they look at him as “chronic” and therefore that is probably why no one is very concerned about looking into it.
Grandma and grandpa came down for a bit to see how things went and to visit with A. J and I went back to the car parked at the hotel to grab A’s bag and stroller.
I decided that because A was in the constant care room that I would go home for the night to get a good sleep. Just before we left A decided to pull out his IV and there was blood EVERYWHERE! I got him cleaned up and then we headed out. My gut was telling me not to go home but I did. When I got home I was pretty upset and felt like such a bad mom.
Yesterday morning, grandpa came to pick me up to head back to Sick Kids to pick A up. We got there at 9:30am and I thought that he would be discharged soon after getting there. However that was a whole other story once we got there. The nurse came over and told us that his feeds were stopped during the night because “it was pouring out of his stoma site”. I said I didn’t believe that as he has had the tube for so long and never once have I seen that happen. She said that the night nurse told her that the bed was soaked from it so they had ordered a GI study to see what was happening. They were just about to start an IV and I said no, that I was starting his feeds up. The doctor came over and said that we could do that and see what happened once it was running. This was 10:30am.
At about 12pm there was no leaking and told my dad that we could leave. On the other hand I was worried now that IF there was a leak we would get home and then have to go to Mac to get it looked after. So I figured since the study was already ordered we might as well wait for it.
At 2:30pm they called us down to radiology. We sat there until 4pm!! Anyhow we went in and the doctor put some dye into his tube and said that it was fine. Then he looked a bit closer and said that there was a tiny leak in the middle of the tube that was in his stomach. He showed me but I told him that I wasn’t worried about it because this was the first tube that A has had that has NOT caused a lot of vomiting issues. Before I could say anything he took the scissors and cut the tube right off! He said he was going to just put a new one in. I was NOT happy! A was very upset as the doctor was not being gentle at all. He was satting in the 40s and they weren’t even worried about giving him a break to settle down. He was screaming at the top of his lungs and I was trying hard not to cry myself. It is VERY hard to watch things like this happen.
When we got out of there and back to the nurse that had come downstairs with us I started crying when she asked how it went. I told her I should have just gone home and not bothered waiting for the study. The other nurse told me that she would get the doctor for me to talk to but I said no, that I just wanted to leave.
We got back upstairs and I calmed down. A was tired and went back to sleep. He was satting between 88-90 which was bothering me. I placed the oxygen in front of his fact and he would go up to 98. Take it away and he would go back down. I think that he needs to go back on oxygen because it is obvious that it is helping him. When he was sleeping earlier in the day ON oxygen he didn’t go below 97. So I will calling a few doctors next week to see what they think we should do.
Anyhow, we didn’t end up getting out of Sick Kids until 6:30pm. We are VERY happy to be home for sure!
So now we just wait to hear from the cochlear implant team about whether or not A is a candidate and hopefully get the date for the surgery!!!! I am sooooo excited that my little man will be hearing my voice!
My little man this morning when I went to get him was at the bottom of his bed…