Progress!! (Insert 30 second dance party)!
Today has been busy, but good. The doctors lowered some settings on the vent today to see how he would tolerate it. He's a rockstar... his oxygen levels were at 60%, and now they are at 40%. Keep in mind these numbers are what the ventilator was giving him, so what he isn't getting from the vent he is doing on his own. They lowered the amount of breaths and he is doing great with that too. Still a few episodes of the bronchial spasms, but I finally think we are on the up! The nurse just spoke these words to my face, people - no joke - "a few more days and he will probably come off the vent," and "possibly Saturday." Ummmm YES PLEASE!So here's a brief outline of our plan going forward:
1) No more bronchial spasms, weening of meds and vent settings
2) Vent comes out in OR, and they take a peek at his "critical airway"
3) Wait on pins and needles to see what that brings :/ Some kids need it back in if they weren't ready, some just need a little extra oxygen through nose prongs, and some are ready to fly.
4) All vitals are good, no meds
5) Move upstairs to a different unit where we learn to live normal again. Still monitors, but this is his thriving test. He needs to eat, gain weight, poop/pee normal, the usual infant routine.
Then we can go home. Although, I might force them to keep him until he's like, 7, and nice and durable :)
Speaking of home... Max wasn't enjoying the hospital very much this morning.
So we decided to spend some time at home today. It was the first time I've stayed there for more than two seconds since our Thanksgiving nightmare. I enjoyed it, to my surprise. It felt so nice to be home, and Max agreed. There was something missing, though, which of course was Kayden. It's so difficult to need to be at 2 places at once :/ Soon, right?
A few friends were wondering about his brain. We don't know the exact time without oxygen when we had those apnea spells at home, but all scans and X-rays look normal. There is never certainty with anything, but they aren't worried. They expect the baby I remember to be leaving with us by Christmas. This will be SUCH a blessed Christmas for sure!
Feel free to ask anything, comments are welcomed :) My initial intent for this blog was to be informative about RSV, which is still my intent of course - but it's turned into our daily journey. It's so much more than just Kayden's vital signs... it's the daily heartbreak, the love we have for each other, the battle of work and bills and sleep and insanity, about the friendships we have, and the new ones we are making here. It's about life...and all of the crazy that comes with it. So comment away!
**And one last thing.... We are feeling lucky tonight, so don't be shocked when we are millionaires by tomorrow.
With so much love & thanks to everyone following and praying with us!
<3 Melissa & Kayden
Dear Melissa and family,
ReplyDeleteWe are so glad that Kayden is on the road to recovery! We will continue to keep all of you in our prayers, of course.
Love, Alan and Claudia
Ben, Melissa, Max and Kayden I want you to know I am thinking of you every day. Being cousins we usually don’t think about each other much. A wedding, a baby, a hare cut this is when we think of each other. The last week I have not stopped thinking about you. For me it’s hard to see what you are going through and not weep. The first time I opened your blog and saw the photo of Kayden in that hospital bead, it hit me how lucky I am to have a healthy baby. I came home and asked Jeremy if he remembered the hospital receiving blankets we had our baby swaddled in just 8mon. ago. Seeing those blankets made it real for me. I think about how strong you all are and wonder if I could be as strong. Even if people don’t want to comment maybe just a :) will do. I am guilty of using this “social” media and not socializing. I want you to know I am here for you if you need me. If you are going to make the time to post on your blog every day so we can “be with you on this journey”. I am going to make it my job to let you know I am reading your blog and thinking of you. Even if this means I only send you a :) because I’m busy. I want you to know that even if you’re up in the middle of the night I may be too and I may be thinking of you.
ReplyDelete~Becky
Hi Melissa,
ReplyDeleteI worked with your mom at Aetna. First let me say what a beautiful family you have. I am a mother of two preemies (both were 33weekers). One thing I have learned about these tiny blessings is that they are strong and mighty. Both spent 2 weeks in the NICU when they were born. So I can totally relate to the being in two places at the same time. Just know that you will always be in the right place, your the mom and you just know what feels right. I wanted to keep things 'normal' for my older son, Chase while our daughter was in the hospital, ha what is 'normal' right, as you adapt to the new normal so will everyone else and remember this is only temporary. Also, please know that while neither of my kids had RSV, my son has been hospitalized twice with Asthma related issues at CCMC, the staff there is great. Hope today brings more progress, like you said slow and steady wins the race! I look forward to reading the blog, and will keep you and your family in my prayers.
Kristen Robustelli