The chest x-ray they did at six looked just like the one they did this morning. Not extubating tonight. Since the x-ray this morning they increased his diuretics so now he is taking lasix and diurel to try and increase his fluid output and draw the fluid out of the lung. Sometimes they say his lung is collapsed, so I don't know which it really is, or what the difference is. Still doing the chest PT every four hours. He's been resting pretty comfortably all day, I think he only broke through the sedation 2 or 3 times all day. We had Nicole for a nurse this morning, then Rosalina again at 3, then Andrew again at night. I love them all. I couldn't be happier with all the nurses and RTs we've seen. They all seem very knowledgeable and compassionate. One of the RTs today let me listen to Drew's lung so I could hear how "course" he sounded. Rosalina gave me a compliment and said I was very good with Drew, calm and not scared. I help with all his treatments, whether it's suctioning or CPT or just moving his position and changing his linens.
I've been doing pretty good with everything, but tonight I just miss my boy. I've been with his body, but I miss his little personality, his beautiful eyes, cuddling with him. I just want to crawl into his bed with him, but I can't. I guess the silver lining of him not being extubated yet is that he has more of a chance to heal and for some lines to be removed before he is awake. Hopefully that means he'll be in less pain when he is finally awake. They did say they will probably pull one of his chest tubes tomorrow and remove his atrial line (an IV that goes directly into his heart).
One more night of good sleep outside of the hospital. Hopefully THIS is the last night we'll be sleeping away from him.
Drew
Drew is a happy 7-year-old who loves his family, his friends, and everything Star Wars! He was born with a CHD, specifically interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He has had three open-heart surgeries, the most recent was in May 2008 at Stanford. He is so strong and brave and we are very proud of him.
Ava
Ava is a spirited 5-year-old girl. She loves her family, friends and climbing, jumping and dancing. She brings us a lot of joy and a lot of drama! She is heart healthy. We love to see all the adventures she has!
This is how Drew's heart is now!
One and a half ventricle repair 1) VSD closed with a patch 2) Conduit from right ventricle to pulmonary artery . Drew still has the SVC connected to the PA in the upper left. Thank you Dr. Hanley and Dr. Mainwaring!
10 comments:
Oh Andrea...what you wrote about 'missing your boy' just breaks my heart. But I'm sure he can feel your comfort beside him or he'd be more restless. I was just 'checking in' before bed tonight. Please know that we've been praying for all of you and thinking of you all weekend!
it sucks that they haven't been able to tell you more definitively about drew's lung, but i'm glad that the staff have been so awesome! i know how much you must miss talking with drew, especially having him so close. i keep thinking and laughing about how he'll want me to stop looking at him once he wakes up! i'm really proud of you for articulating these feelings to all of us reading the blog, by the way. every little bit that they are doing right now is just one more "check check" on the list to get drew back home to all of us. anyway, late-night ramblings aside, all of my love to the himmelbergers!
I went to bed and realized I did not check before falling asleep. I am glad I got back up. I am praying for a quick recovery and lots of snuggles and converstations with Drew very soon. I love you guys
Kristina
Andrea: I'm just sitting here in awe of God's work in your heart, dear sister. Think about the incredible difference between your experiences with the nurses now and the way things were when Drew was first born. God has fortified you in such a healthy way -- your tenderness is still so present and yet your strength is amazing!
I can only imagine how your presence is comforting Drew, and inspiring the patient care team.
I love you! 8 )
I can only imagine how much you want to hop in that bed and snuggle with your little boy. I'd love to give him a squeeze myself! (: We miss him, too. Hang in there. You'll get to see his eyes and hear his voice soon. Lots of hugs, kacie
Oh man... I can imagine how you just want squeeze him. You guys continue to amaze me with your strength. What a huge answered prayer to hear about how good the nursing staff is. I look forward to hear whether they will be extubating him tomorrow.
Amy
Andrea- I can't imagine what that is like to have him there, but not really "there". I'd guess there are moments that you just want to pull out all the tubes, scoop him up in your arms and just run away from it all! Hope you had a good night's sleep. We are praying and missing all of you.
Kristen
Hey Andrea-
It must be so difficult for you to go so long without your normal, everyday snuggles, giggles, and talks with Drew. We are still praying and sending you are love! Stay strong.
Oh...I hope the increased dieuretics helps!
You know..at Stanford...once most of his lines are out, you CAN lay in bed and snuggle with him!!! So...jus a few days and you'll be snuggling with your sweetie again!
I'm glad you're getting the best nurses! (that must really like Drew!!!) and I LOVE all the RT's!!! They're sooo sweet!!
Hope this day is peaceful and calm...and shows improvements in his xrays.
Lots of love,
Kathy
You will get your boy back very soon! It is so good for him to be getting this rest right now. His body is buy healing up and getting strong. You are doing such a great job. Drew is so lucky to have you! Hang in there and we'll be praying for the extubation to be "right" today. xoxoxo
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