Big smile from Drew!OK, so it's only day 12, but it sure feels longer than that!
We've had a great day today! Drew is acting pretty much like himself. Praise God! He's talking, joking, laughing, playing, and even eating. He went to preschool from 10-12, then the playroom from 2:30 to 4. Now we're playing in his room, but he's sitting on the bench next to me, not in his bed. He had PT at the "gym" and played basketball and got most of his balls in the hoop. She is going to try and see about finding him a tricycle to ride, although I'm not sure how that will work with his tubes.
Drew didn't eat very much breakfast, but he did eat all his pasta for lunch, plus a quarter of Dan's chicken sandwich. Just now he asked for carrot sticks with ranch (what?) and I went on a hunt to find some.
Guess how much the chest tubes put out last night? 35 and 27 mls each. Yay! They are waiting another day to make sure the output stays low, but they might take them out tomorrow. They are saying that he's chylous, but so far we are just trying to restrict his fluid intake a little (it's not very hard) and avoid super fatty foods, so I guess I'll have to hide the bacon I ordered him for breakfast tomorrow.
The one piece of bad news is that there is a third spot of infection on Drew's incision today. I took this gross picture of it when they were changing his dressing.
Disgusting huh? You should have seen the dressing change though. The surgical fellow actually opened his incision up while he was laying in his bed and I was standing right next to him. With a scalpel. She could have warned me. Blood was dripping down his side and got on his bed. If I had known they were going to do that I would have made sure he got a sedative. At least he got his fentanyl before, they were almost going to do it on only tylenol. But, my kid is amazing. After they literally cut his chest open, cleaned it with a swab, and packed gauze into the open wound, he got up and went straight to the playroom. I don't think any adults I know would do that, let alone a 4-year old. He's awesome.
Some other pictures and videos to make up for the gross one.
Drew figured out how to work his bed and plug in his leads today
Playing with the train
Playing with Eben in the playroom yesterday
More trains
He was so tired he fell asleep in his wagon!
Me and Jen and a grumpy Drew
16 comments:
LOVE LOVE LOVE that smile!! Yay for a better day! I know it has to feel like forever to you cause it sure does to us here at home! Praying that each day gets better and you get to come home soon!!
1000 days! Wow!! Ok, I agree that the picture of his incision is pretty disgusting, but it does give us a good idea of what it really looks like. That sucks that he has a third infection site, but hopefully all these antibiotics will kick in soon. He is so brave to let them cut open his incision without strong meds. I know that I could not have done that. Good job Drew, and good job Dandrea, too!!! Love ya guys!
Andrea...that picture of his incision almost gave me a heart attack! Oh my GOSH!!! How in the WORLD did all that happen?? Do they know the cause?? And will it heal like the normal scars...HOLY COW...you are amazing for NOT freaking out! (I'm totally feeding your freaking outness...aren't I) GEEZ...So I guess Amy and (what's his name--the guy pa) are always in your room!
I'm glad that I ate before checking on you...I just can't get over that picture.
Hope those antibiotics start kicking in and his little chest starts to heal! (my mom told me to tell you to have them put Drew in a hyperbaric chamber and that pure O2 would clean that scar right up!)
At least his not putting out as much fluid (does that help the infection??)
I'm so sorry that Drew (and you guys) have to go through all of this...you're SO STINKIN' BRAVE--seeing those pics puts everything in a new light. Seriously...do you need anything??
Thanks for the gross pics, the updates...and videos...
we love you guys,
Kathy
Drew is a trouper. I would kick a doctor that came at me with a scapel on only Tylenol. You are amazing for being in the room when they did it.
I am so happy to see Drew smile so big. It's amazing how resilient children are. Even through some of the toughest times they can find laughter and joy.
We are praying the smiles keep on coming, the tubes come out and the incision gets better fast!
So happy to see the progress!
Jen, Pete, Eben and Ella (Screaming her little head off as I write this, yay it sounds like she finally stopped and is asleep.)
Wow! It sounds like you all have had such a better day! Praise God for that!
Still praying,
Jennifer
"Hi Drew its me Tommy!
I promise I will share with you tomorrow when I see you. I hope you feel better. I hope God helps me share and if I play for one minute something that you want I will give it to you and say Here you go Drew because I am sad that you don't have all your toys from home with you. Your friend Tommy."
We are all looking forward to seeing you tomorrow. We will be there as soon as we can.
Praying Praying Praying for more smiles like that from Drew.
Love
Kristina Tony and Tommy
What a beautiful and sweet picture of your baby's smile! :) YEAH! It warms my heart beyond words to see the genuine happiness he is getting back. The incision is pretty nasty. But, as you said, your son is a little stud! I'm in awe at his strength. God bless you guys!
Yikes, so much for getting a "better" scar this time. I suggest that everyone in the room next time gets medicated before cleaning his wound happens again! But seriously, the pictures and video of him after that are just amazing. He is truly amazing!
I was glad that I scrolled up before scrolling down so I got to see the happy face pic before the incision pic!!! You are right, your kid is AMAZING! Praise God for all that he's been through with a smile on his face! The tone of your post seemed great I could see the smile in it! Praise God for that also!!! Praying praying praying:)
Love, The Sheridans
He looks great in that first picture!!!! Praise God. Okay, I'm going to have to come visit again.
What a beautiful picture of Drew smiling!
And for the incision picture...that looks really nasty. How did this happen? So much for the silver strip...huh?
I keep praying those tubes with come out. You all are so strong and brave going through all of this. Give my love to Drew!
That first picture just filled me with joy. It's so great to see a genuine happy smile. I'm glad to hear the progress. Such a big difference even from when we were there on Monday! Yay!
That smile is priceless!
Glad to hear you had a better day today!
Still praying!
Love, beth
Yay for smiles! Booooo for infections! But it's still baby steps forward! Still praying!
Amy
Drew looks so sweet! I cannot believe his incision...I am so sorry that he is struggling to get that all healed up. That does not look fun, and yes, they could have warned you about what they were about to do...seriously, I think that they often forget that this is someone's child and entire universe. Hang in there...I know you want to get home.
Thinking of you guys all the time.
Love,
Samantha
That little dude is one of the strongest people i know! Amazing.
We are missing you guys up here and would love to see you soon!
~Matthew
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