Frustration 10:39am April 27th

So we got to the hospital today after 10am.  Of course since they have been having staffing issues, we couldn't find Owen's nurse because she was in a different room.  Owen seemed like he might be hungry so I looked at his chart, and I really wasn't happy with what I saw for this morning.  The last time they had fed him was 8am and he took 30ml, that isn't too bad, but what pissed me off was that the time before that 7am, he only took 7ml.  He never only took 7ml when we are feeding him even when we first started feeding him with a bottle after they took out his breathing tube.  I feel like we are never going to get out of this hospital if Cassie and I aren't here all of the time to feed Owen because when we don't feed him everything seems to come apart.  Thankfully his weight was up this morning 3706g, don't ask me how he managed to gain weight yesterday when he barely even met his maintenance (maybe he just hasn't pooped in a while).  We ended up missing rounds because they moved him up in the schedule because of the issues he was having last night.  They aren't going to change anything.  They went back down on his Captopril and they aren't going to give him any diuretic.  I feel pretty bad because I was getting upset with Owen's nurse and his care partner, but I can't help getting upset that every time we leave things seem to go to crap.  Cassie and I are thinking of taking turns staying overnight because he does seem to do so much better when we are here.  It just gets so frustrating.  It is stressful being at the hospital all the time so I feel like just leaving sometimes, but then it is stressful being away from the hospital because it seems like anytime we leave for a few hours he isn't feeding well and we don't know how he is doing.  If they could just let us take him home and have that consistency, I feel like things would be so much better and he wouldn't have any issues.