Today we made a big change and moved out of the nicu and across the hall to the step down unit where we will start to finish everything we need to finish in order to go home. Seems like we have a good start on things already. Tomorrow we will do CPR and this week we will get our home equipment and our training on it. Our next big thing will be home nursing, which is difficult. We still have about 500 grams to go before he can be released from the hospital on his home vent, so hopefully everything will come together by the time he hits his weight mark.
With the transition today, I suctioned out a good size mucus plug that was greenish, this worries me that he may be coming down with something, he was also more fussy tonight and he has been pretty sleepy today. He has no fever or any thing else that really indicates him getting sick, but this is the first time I've ever seen colored secretions out of the trach, with him and Lua she never had this. I'm also worried about him over night in this new unit and new bed, new room, but thiago went back to be with him for awhile, and he is still asleep. Hopefully he has a good night.
Sol still looks like he is getting use to the new vent, he prefers no vent at all, but the hope is that the vent will help make him stronger and with him getting breaks in over night with extra support with breathing, he can maintain his reserve and not wear out easily.
I dont think it is crazy to say we may be going home in 3 to 4 weeks. It seems very stressful and a lot of anxiety about it, but it is coming up quickly. I hope we are ready for it when it comes. I'm already so nervous of making any mistake because the last mistake I made cost us our baby's life and I dont want to ever go through that again, but wondering if I get a choice in that or not. I'm definitely living my life more so in fear and I hate that. It sucks to be scared every day of screwing something up and having it risk your childs life. It isn't a great way to live. I so badly wish Sol could have had the pre-Lua parents. I was much stronger then, more determined, not so broken down. At this point I feel like I am many times just hours away from a total break down.
We got in an accident while we were trying to get back to Madison this last week and I totally went off on the lady who cut us off, stopped in the middle of the highway, didn't use a blinker and got out of the car with her phone in her hand showing me she was looking at her GPS. Thiago hates that I get mad enough to go off on people, but enough is enough. The last thing I can tolerate is people who are driving like morons and idiots. Our vehicle is going to need some good work done to it, and she had almost no damage done at all. Very frustrating.
oh well....
I know I can say don't blame yourself for what happened to Lua because as Parents, you and Thiago are the Best! I can't imagine everything you guys have been through and all of the sleepless nights. You are good Parents! You worked so hard for Lua when others had given up! I know even with your Uncle Ron I have thoughts of "What if I would have insisted on this procedure over that one" But it doesn't change what happened and we all have to just go on with our feelings of guilt and pain. I know you will always blame yourself,(nothing anyone can say will change that) but you are doing such a great job with Sol and I'm sure he can feel the love and caring that you give. Anyone in your position would have doubts and fears...I would be scared to death, but your abilities are amazing to me. And if you snap at a stranger who is driving like an idiot...so be it. Maybe she will learn something from it. Hang in there, take a deep breath and just love your children. You are a good Mom! Love you
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