Well it has been a very tough couple of days for me. A was taken off of the vent on Sunday and did okay until about 5pm. He then started with his morphine withdrawals AND blue spells. I was just beside myself.
Anyhow, the one stitch has come out of the right side of the trach. This is of course the side that is a bit wider open than the other. We had to change his trach tie Monday night and he did NOT like it. He was crying his eyes out and was very very off colour. I don’t even want to see this kid when we have to do trach changes!
There is a chart at his bedside where the nurses are to record all blue spells/desats so the doctors can try and figure out WHY he is still having them with the trach.
Monday I probably cried for three hours straight. I just am SO tired and just want things to be fixed and go home. There have been alot of tears shed this week!
On a positive note, he is sleeping BEAUTIFUL. I don’t want to jinx things, but so far so good in that area. The only exception was last night which he was up from about 12am until 6am. I was finally able to see his sleep study that he had done almost two years ago while we spent 88 days in Sick Kids. He had a total of 58 obstructive episodes which came down to one every five or six minutes. Those are obviously gone now with the trach.
Why on Earth I was told by his team at Sick Kids that his sleep study was not that bad is beyond me. His RT here said that his sleep study was “scary.” To me this is something that should have been dealt with almost two years ago.
He is breathing better in the day and does not have the nasal flaring that he has always had and the hard work of breathing.
We had a team meeting Tuesday and the issue now is his feeds. He is aspirating (we got formula out of his trach Monday-not 100% sure but pretty sure it was) and we are trying to figure out what to do. I was told by the docs that I am NOT allowed to have any say in feeds right now and they are trying to work them out. This is VERY hard for me as I am a 24/7 hands on mom. So they want to feed him straight peptamen 1.5 at a rate of 20mls/hour from 8am-10pm. Today he is up to 40mls/hour for the same amount of time. This makes me ANGRY. He has to sit in his chair this whole time. I know it is only temporary, but I am stressed out after watching him in his chair for ten minutes with the trach.
The doctors said that I am probably emotionally, mentally and physically exhausted and therefore they are taking some “burden” off of me. However I did say that I am the one sitting there all day with him, not the dietician. I am the one watching him reflux. I am the one dealing with him being upset because he is NOT comfortable in his chair.
Yesterday and today from about 12pm until 2pm he is just CONSTANTLY turning blue and just not happy. I really don’t know what to think of it but I just hope that this stops.
Just another day…..I really need to start seeing a light because I am already stressed to the max! Here is a picture I took last night myself of my little man and I.