So we got up this morning and left for the hospital around 8am .. We got here a little before 9am, then we started our training. All we did was learn how to calculate how much oxygen we would need if we were to go out with Eowyn or calculate how much oxygen was left in the canister which would tell us how long she could be out with just that canister or if we would need to bring another one with us .. I just figure, if I go out anywhere with her I will just gave to learn to bring two because there is no way I'm going to be stuck some place with her and not have more then I need at all times .. I mean you never know what will happen.
Right now she's doing good .. HR is 144bpm, Respiratory is around 55-65bpm and her Saturation is 100%. Just from reading everything you would assume she's doing great and she is .. Now!!! around 9:40am she started getting really agitated, I gave her her binkie because she was trying to suck on her hands and I could tell she was hungry (and she was hungry because they stops her feeds so when OT came in Eowyn would be hungry enough to take a bottle, they were going to let me feed her), she was just going crazy sucking on the binkie and was getting even more upset, which is understandable because if someone stopped me from eating and I was hungry I'd throw a fit too, then, to say it as plainly as I can, she decided to hold her breath and turn blue. Because of the hypertension once she gets upset it's really hard to calm her down and when she cries so hard that she holds her breath its near impossible to calm her, bag her or do anything. So her stats start to drop and the RT can't get her saturation up, Eowyn is on high oxygen support at this time and still the bagging is not working. I can see that her lips are starting to have a blue tint to them and she got really white .. I'm telling the nurse and RT this whole time, not like they couldn't see it for themselves but I didn't think they were freaking out quite enough so I wanted to reiterate everything for them. They end up calling a Rapid Response on her and in minutes a swarm of doctors, nurses and RT's rush into her room, so many familiar faces .. Most of them were people who worked on her when she was over in PICU, well I was kind of comforted when I saw all of them coming and I know that sounds weird because when there's that many doctors and people in one room you kind of freak out but I felt like no matter what she was going to be OJ .. Anyways, call me weird or whatever but that's how it felt, well amongst the panic and crazy unmentionable thoughts that were going through my head. So as they got here her saturation went down to 74% her HR was 74, her breath was almost nonexistent and finally when she got so tired she couldn't fight against them any longer her stats started to come up, they could bag her without problems and her saturation came up to 98% .. But man oh man did she put up a good fight. Then she fell asleep and rested for a bit. When she woke up around 12:15 she was happy and smiling, I got her to grab at one of her toys and she started sucking at her hand again so I gave her the binkie an she did good for a little bit but she was just to hungry again for the binkie and was getting really mad so finally at 1pm they started her feedings again and about 10 minutes later she started having another one of her spells where she gets mad she clamps down and basically stops breathing .. She ended up throwing up so they stopped her feeds again and now she's sleeping. This episode wasn't as bad as the first one which is good however, they did tell me that if she keeps having these then she will not be able to go home till they are gone so now every time she does this all I think is great now it'll be even longer till she comes home. They also want to up her on a new medication and take one of the ones she is currently on away, so we'll find out more about that when the doctor comes in and discusses that. So that has been my exciting morning and early afternoon, I just hope that's the end of it and we can move forward from here. They also found that there is some bacteria around her Trach so she is on two antibiotics for the next 14 days.
The little bit of good news is, they did a chest X-ray to see if there as something wrong with her chest or something blocking her Trach like a mucus plug or something and it came back normal .. The doctor said there was no new change from the one they did yesterday so this is all a result of her being mad. So Praise God it's not something horrible .. Puts a new meaning on the whole "I'm going to hold my breath till you do what I want" things from our kids .. She actually really means it lol!!!!
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