Day 21
Hailey is doing pretty well today. They weaned her ventilator settings just a tiny bit and so far it is going all right thanks to lots and lots of prayers from all of you! Her belly is also down to 58.5cm from 61cm a few days ago, so that is exciting too!
I really feel like she is finally moving in the right direction. We are so grateful. It has been such a struggle to maintain any kind of normalcy for the last few years, so we are excited to get home and try to get back on that path again. Long-term survival mode sure puts a twist on family life.
Someone came today to talk to me about all the details of a trach. It sounds about like I thought it would. Kids with a trach who are on ventilators, which is what Hailey's scenario would be have to have constant nursing care, including through the night, to make sure they are safe. They can't talk or cry very well. They can't be submerged in water and are more susceptible to being sick, not to mention lugging a 14 lb. ventilator everywhere you go, trach tubing changes, cleaning, and care, plus constant suctioning. I have great respect for all my dear friends who have dealt so much with these. They are very hard to deal with. If Hailey can continue to make progress to get off the ventilator they won't do it of course. My friends have advised me only to do it as a last option and I have to agree. I also shared my concerns that Hailey might not survive placement of a trach and the person giving me all of the information agreed. So, hopefully we will just keep moving forward.
Hailey acted super exctied when we walked in today. She kicked her legs and moved around a whole bunch (they can't use their voice on the breathing tube either). She was definitely excited. Then she kept staring at me because she really wanted to be held. She was so happy in my arms. She played with some balloon we had gotten her for Valentine's Day. It was so encouraging to see our little Hailey's personality shining out from under all the heavy medications. My mom is getting to hold her right now, which is awesome!!! I held her for about 5 1/2 hours and she slept peacefully most of the time. I love the snuggles I have missed so much!
Our other girls are doing well. Abby figured out how to use FaceTime and has called me on it a whole bunch today. It is so cute! It is good because I think it makes it feel like I am more accessible to them since we are apart yet again. They are our other heart heroes. I think they have spent 7-8 months being separated from me in the last year or so. They really struggle with the separation, but the only way they can really be with me is if Ben can be with me too since kids aren't allowed in the hospital for a good chunk of the year and not allowed in the ICU at all (except to snap a few pictures). They have been super brave. Even when I am home Hailey requires a lot of help and attention. They have had to endure a lot in these last few years. They have been little troopers and we are so grateful for that.
I am so happy to hear Hailey's recovery is going in the right direction!
ReplyDeleteI am so happy to hear Hailey's recovery is going in the right direction!
ReplyDeleteI hope she continues to improve, a lot! But was it a parent, or a staff member that came to talk to you? Because that's not our experience. Yeah, I'd love to kick the vent to the curb, but that's just because it's another piece of equipment we haul around. Once you get used to the trach, it's really not hard. And yes, someone has to be around to take care of him, but we're certainly not by his side 24/7, just within hearing, like you would any baby. And while we did suction quite a bit in the beginning, now it's once or twice every few days. And it's a lot easier to manage things when he does get sick. Sending you lots of hugs and love. I'll be back up there next Wednesday when he has surgery. If you want, I can stop by. We'll be there at least overnight. ((((HUGS))))
ReplyDeleteThanks Sarah! Yes, Rebekah! Come see us! That would be awesome! I was talking to the RT supervisor. She was saying that we'd need to have a nurse watch it at night or take turns staying up. She said you can monitor with a pulse oximeter but it is more risky. I'd love to hear more about your experiences with it, plus it would be great to see you!
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