Our first night of rooming in went well, other than lack of sleep. One of us has to stay awake at all times so we sleep in shifts. Her ventilator has alarmed about 5 times a night for the past 4 nights saying that she is having Apnea. We know that she isnt, since one of us has eyes on her, and can see that she is still breathing. Her heart rate and oxygen saturation levels remain the same. Last night she was even sucking on her pacifier when the apnea alarm went off. So now the PICU staff is concerned that the leak of air around her trach may be too big and the alarm doesnt register some of her breaths. They are afraid that the alarm will "annoy" us at home and we may just ignore it. So they want to have ENT consult on it before we can go home. I am really hoping that they make it by tonight or first thing tomorrow. But with our luck and the way things seems to be going, it will be Mon/Tues. The down side of this is if they change the trach size, we will have to stay in the hospital longer, it takes a few days to get her customized trach ordered and delievered, and then a few days for them to monitor her once they change the size. Plus a larger trach will decrease how much we can hear her. SO we are hoping that they leave well enough alone. We know that she is not experiencing apnea, and truly think the alarms sensitivity just need to be adjusted. Someone from our home health company will be here Mon morning to help adjust the settings and make sure the alarms are set correctly. So we may make it home Tues, but there is a good chance it may be later than that. Elizabeth was weighed this morning and is now 13lbs 4oz, which doesnt seem like a whole lot, but no one has seemed too concerned about it yet. But it is on my "list" of concerns to discuss on Monday. She did throw up again this morning, but again was smiling as soon as it was over with. And again no one seems concerned about it other than us.
WARNING~~~~ MY RANT FOR THE DAY ;)
Sometimes I feel like we have been here "too long" and its almost like they think we are just taking up space here. Trust me I would MUCH rather be home taking care of her myself than sitting here feeling like I am doing most of the work anyway. This rooming in is almost a joke because we are doing basically the same thing we were doing before expect we both have to stay in this room all the time, and the nurse doesnt start her feedings or give meds we do, everything else is the same! We had a respirtory therapist last night try to turn her oxygen down. When I told her I turned it back up, she told me that she was trying to wean her OFF of it!!! When I explained that she has always required it and still needs it, she said "oh I didnt know all that". REALLY if you dont know then ask me or read the freakin chart lady! So needless to say I am about at my limit. I understand that doctors and nurses and staff are human and can make mistakes, and have lots of ppl to deal with that have different problems. That's why we stay as informed as we can about her condition and her care, but when I have questions or need help, I should not be made to feel as though I am wasting their time. Ok, Im done for the day! :)
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