Today was a pretty tough day for me emotionally. I was reassured by all the heart moms that this is normal and most feel this way at some point, but it was still hard.
John was weaned off of his pain meds and only given Tylenol or other oral pain meds if he needs them. When I got there he seemed fine and was swaddled and looked comfortable, but then it was time to start his feedings again so that required an NG tube to be put in to his nostril which was already occupied by the nasal cannula for his oxygen (which he's being weaned off slowly). So he did not take that well, then it was required that the nurse suction out whatever is down there first and he didn't like that either. She tried to retape his cannula and the NG tube and ripped off the tape 2 times and still the cannula was falling out so by then John was totally pissed off. One of the head nurses, Patty, came in and saw that he was struggling and wanted to retape him again, but I stopped her and asked if it would just be more comfortable to just tape the cannula up to his nose instead of his cheeks. It looks quite goofy but it would be less aggravating than ripping off the cheek patches once again. The other option I told her was that I could stand there and hold it up to his nostrils all day and I really wouldn't mind. She opted for the tape up the nose. I agreed it was the least aggravating way to keep it up.
He fell asleep for a little while and then was fussy once again, this time there was no consoling him. I saw him looking at me and crying and hearing that raspy little voice of struggle and it broke my heart. I felt hopeless that I could not help my child. He seemed mad and the pacifier didn't work, stroking his head didn't work, swaddling didn't help, lullabies, nothing. I felt like a failure of a mother, I couldn't pick him up or do much to help him. The worse thing was that when he looked me with those little eyes, I swear all I could think that he's thinking is 'why are you doing this to me' or 'why aren't you doing anything to help me'. It was just pure heart brake. I finally asked the nurse if he got ANY pain meds today and she said no, so I told her he needs something, it has to be pain related, at least it would relax him a bit. She did. Once he calmed down, it was time for another CPT and the respiratory therapist started beating on his lungs again. But once that was over she swaddled him and he fell asleep, I bet it was from pure exhaustion.
When he was sleeping he looked so peaceful, he rested for maybe an hour and then it was time for his vitals and diaper change which woke him up once again. After that it was time for me to leave to go home and since he was not sleeping I broke down again because I had to leave him and I totally felt that he knew I was leaving and he was probably thinking why is she leaving me. It was hard to leave him today.
Anyways, I think it's my emotions catching up with me after a week huge events in our son's life also the fact that Joe is no longer with me in the PSHU and we have to switch off. It was just not my day. John is doing well though but for some reason I'm dwelling on the bad and my own emotions, when I should be happy hes doing so good. Maybe tomorrow will be a better day.