Well I haven’t stopped crying all day. I am so tired. Tired of watching my perfect little man suffer. He had a fit yesterday for 45minutes. The nurses were in there and had him on 100% oxygen and not ONCE did he come above 50 in his sats. At one point on a good tracing it said 7. I can’t go on watching him like this. The doctor was paged but didn’t come for at least an hour AFTER the spell ended and once again told me that A is breath holding. Breath holding my ass! They just suddenly started this past week when he never had them in his life?!??!?!?! I don’t know what else to do for him. I have fought and fought and fought and yet still don’t get the help he needs and deserves. If anyone has ANY thoughts please let me know!
Never in my life have I felt like giving up on this but it has crossed my mind. I just can’t take it anymore! This is supposed to be one of the top five hospitals in the world but yet we aren’t getting anywhere. If I won the lottery tomorrow we would be going to the States.
Oh where to begin. I am so frustrated. The complex care docs were in this morning and from the way they are speaking they are wanting to get A home. Now this is a great thing but I want answers before this happens. He is being weaned more from his morphine today and will be off it totally by Thursday or Friday. They also ordered that is not on a monitor during the day but only during sleep. I think much of this has to do with the fact that the docs do not want me watching the numbers. I have issues with how low his oxygen has been going for the past few days.
On a good note he has not had any of those crying fits today, last one was last night at 7pm. There goes my theory of it being hunger as his feed just ended at 7pm.
Blue spells still continue. The doctor says that he believes it is breath holding. The nurses on the floor do not understand as they are the SAME as before but worse. I am beyond confused as to why they are not concerned about them now.
Oxygen was discontinued at noon today and when he went down for a nap at 1pm he was satting between 78-84. With blow by he is 99. Why does he suddenly require oxygen while sleeping?! When we came in hospital he was not on it and his average sat while sleeping was 95.
To top everything off I am starting to get sick I think. I have a sore throat and feel sick to my stomach. I am just not in the mood.
Still waiting to see the chest team now as we have dealt with the reflux. (They wouldn’t do the sleep study or see him in the beginning until his reflux was dealt with.) Hopefully they have more convincing info for me then telling me that A is holding his breath.