Chase had a rough day. I wish I was Houdini so I could magically fix him, make his nose bigger so he could breathe without the trach, teach him how to suck and swallow so he could feed without a tube, and wisk him out of that place he's in happy and healthy. The nurse said he started going down hill about midnight. She was suctioning the mucous from his trach and his heart rate and oxygen sats bottomed out, dropping into the 70s and 30s. She said he turned blue and they had to bag him (probably more information than I needed to hear, but anyway) They have had to adjust the ventilator settings to accomodate him and help him out. So now he's getting more of everything-oxygen, pressure support, etc. He had another episode when we were there this morning, which is so hard to stand back and watch. He had another brady/desat, got bagged, turned blue.
We were able to talk to the 3rd yr resident, who said they are all "perplexed" that he's still requiring the vent and not getting better. The chest x-ray from yesterday showed no signs of pneumonia. They did a bronchoscopy this morning to see if there was a mucous plug blocking his trach and there wasn't, just alot of secretions. They ran an extensive blood test to check other signs of infection and that showed his white blood count is elevated, but they're waiting to see if the gram stain grows out any bacteria before starting antibiotics (this all per Chris as I couldn't bring myself to go back this afternoon).
It's so upsetting to see him getting worse instead of better. I was hoping after the trach, he'd turn a corner and start getting better. He's worse now than he was before the trach, and it seems he was doing better when he was 3 weeks old and not on any support, only having occasional bradys/desats. I know I shouldn't go there, but I have to wonder if we made the right decision to get the trach or if we should have waited a few more days. I just wish I could understand why he's not getting better, not even slightly better. Sorry to be Debbie Downer. I wish I had better news...maybe tomorrow.
For when I need a little mini mental vacation somewhere sunny with an umbrella drink in hand.
Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth.
Genesis 9:16
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10 comments:
Hang in there Katie...please know our family is praying for you and baby Chase daily. He's a tough little guy and it sure seems he's inherited that from his tough mamma! We love you.
We do not have the words to express our love & concern, God bless you three. JIm & Vic
Stay strong Katie. I can't even imagine the helplessness that you must feel when Chase is having a bad day. Our prayers are constantly with you. Thank you for doing this blog. It's a wonderful way to keep us connected to Chase's progress. We love you. Kelly, Kim, Jan and family
Katie, I wish I knew what to say to you to make you not doubt yourself or your decisions. You've been so strong through all of this. I want you to know it's okay to have occasional second thoughts and down days. From the beginning it has been such a roller-coaster and you have been such a rock. Please know that I will keep praying for all of you. Take care, Amy
Thinking and praying for you. We love you, Lizzi, Paul and Charlotte
We love you so much, Katie. You are all in our every prayer. You are the most incredible mamma I know. Love, bec
I'm thinking about you guys tons and sending you all my strength and prayers. Hang in there. Love, Darby.
Dear Katie and Chris,
You three are in our thoughts and prayers constantly. From this blog you know how many are pulling for you, and I hope it helps you find strength. We're with you always.
Love,
Aunt Shari, Uncle Bob, and Kyle
Thanks for the blog, Katie. I feel like I'm walking the walk with you, but I'm not sure I could do it as well as you are. You are a rock, and the doubts and fears are all part of the human condition that creeps in--even when your faith is strong! We continue to pray for God's will in Chase's life. It's easy to see what a blessing he is to you and Chris, and it's beautiful to witness the ways he has touched so many other lives already. God is at work, and will continue to work in your lives. I'm going to hook you up to my sister-in-law Sheryl, who has spent many, many months at Children's Mercy with a sick child, and now works there. I'll let you know. We love you all. Bob and Cathy Sexauer.
My name is Mandy Lynch. My husband is Chris Gray's cousin. Pam gave me your blog. Our son, Noel, also has a trach and I definitely can understand the emotions you guys must be going through. The best advice I can give you is take it one day at a time. Try not think too far ahead. Noel is doing better than anyone could have expected. He still has the trach and is developmentally delayed, but has a great personality and is so much fun. He has been going to a daycare (even with a trach) since he was one and they have been great. I would love to talk, or correspond with you via e-mail if you are interested. I hopefully can answer some questions and give you some resources. I can tell you that things do get easier--trach changes, equipment, etc becomes so second nature you don't even think about it after awhile. I am sure that is hard to image right now. Let me know how I can help and please e-mail me if you would like. My e-mail is alynch@nkcsd.k12.mo.us
We will be praying for your family.
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