First, let me say that I feel so blessed and loved to have so many people praying and crying along with us. I was crying as I read everyone's responses to my last note...I don't know where we'd be without our friends and family. We love all of you! I know you're probably thinking I'm nuts after the news we got yesterday, BUT I took Tucker to the pulmonologist (lung doctor) and we had a great appointment! I let him know everything that had happened yesterday, and he of course is concerned as well and wants the MRI done as soon as possible also. He told me that he had planned on weaning Tucker's oxygen today, but with everything going on with neurology he thought it best to hold off, and I was pretty disappointed but understood why he would want to wait. Then I told him about a little accident we had (I can't believe I'm about to admit this because I feel like the WORST mommy ever!), about a week ago Tucker's oxygen was disconnected for about 2 hours...and he did very well with it. We had his pulse ox monitor on for the last 30-45 mins and he was sating between 97-91, but never dropped lower than that. Once Dr Fong heard that story he decided he couldn't ignore how well he's doing and decided to wean Tucker to 1/2 liter!! He said that if he was sating well by the end of the appointment we could keep him on it and watch how he does! He also said that if he needed more at night then to turn up his liter flow to a full liter. He then told me the best news ever: in a month or so, if he can stay stable on 1/2 liter he's going to try him on room oxygen while he's awake and put him back on oxygen while he naps or sleeps at night!! A month or so from that we'll do a sleep study to see if he can sleep without having any problems through the night without oxygen!!! I wanted to cry...it's the news I've been waiting to hear! He was so happy with how he's doing...and it made my heart soar! So far, he's doing great on half a liter...he's sleeping now sating 100%. He is AMAZING!
I thought he would be really groggy today because of the phenobarb, but when I woke him up for his appointment, he was happy and talking. He didn't cry in his car seat or on the way to the appointment in the car, he was happy and talking the whole way there and the whole time at the doctor's office. He came home and took a nap, we went for a walk with Riley while he slept and woke up and ate like he hadn't eaten in years! My mom was changing him and he actually rolled from his back to his side! He laid on the floor and LAUGHED! His first actual laugh!! He played on the floor for about an hour, talking and cooing and moving like you wouldn't believe! I don't know if it's the phenobarb or just a really good day but he's such a different baby! He was always happy but I don't know, he has this new alertness and awareness, I don't know how to describe it, he's just amazing me every minute of every day.
Last night was such a hard night for me, and then God amazed me and gave me such a wonderful day today. He has shown me who my true friends are, who really cares about us and loves us, and I want to thank each and every one of you for being there for us. I never dreamed I'd have so many wonderful people to support myself and my family through such a trying time, and there will never be enough words to thank you all. God bless!
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