Sunday, August 11, 2013

Super Joe- Post Surgery Blues

Reporting for surgery!

This will be short, sweet and quick. Joey did awesome in surgery on Thursday to have his adenoids and tonsils removed and his ear tubes reviewed. He did need a little oxygen post-op as well as some morphine and Decadron. He came out of being intubated with a very "croupy" cough according to his surgeon, so they kept him on Decadron (a steroid) during his hospital stay.

This mini-car was a saving grace! Surgery wasn't until 12:15 and Joey last had food the night before at 7pm.

We had a scary incident on Friday when Grandma and Grandpa brought Tommy to the hospital to visit. Joey had gotten some of his medicine and then after his nurse left the room he started choking, and choking and choking. Tommy stood to the side of Joey and kept saying, "Just keep calm, Joey, just keep calm, Joey." I was holding him and it got scarier and scarier. They think his throat must have spasm-ed and then sealed because he started to turn blue and could not breath. Tom ran in the hall screaming, "My son is choking!" and I remembered in the back of my head to pull the cord out of the wall if there was an emergency and so I pulled it. Within seconds there were 10 nurses in our room and he finally started to breath on his own.  That was our big excitement in the hospital and we were so glad when it was over. I felt horrible that Tommy had to be there, but he was such a great big brother.

Finally sleeping after surgery.

His new position.

He recovery and post-surgery has been a lot like some of the other experiences we had heard about. He has very little appetite and for the most part doesn't want to eat or drink at all. He's gone from a boy who loves to eat and drink his milk and water to a boy who might eat once a day and might drink half a sippy cup. As long as we can keep a little something in him and as long as he keeps having wet diapers- we can hopefully stay out of the ER. 

His breath is even more ridiculously ghastly than I had imagined. We were warned and warned again and I had no clue that his breath could really be THAT bad! Well- it is. It's comical- I feel bad because I feel like the entire house smells like his breath. Aggghh!! Poor kid-- cannot imagine what that tastes like!

So we've got the bad breath, his not wanting to eat or drink and then there is the process of trying to get his medicine in him. Joey. Hates. Taking. Medicine. He just does. He's had too much of it in his life and he cries and chokes and it takes Tom holding him and me squeezing a tiny bit of liquid ibuprofen in his mouth over about a 10 minute period. Normally I will just crush up the kid ibuprofen, but since he won't eat, that hasn't been working. I made home made chocolate pudding and put it in there- no dice. We gave him vanilla Haagen-Daaz (thank you, Uncle Tim!) with a quart of Hershey's syrup, plus the ibuprofen crushed up in it- no dice. Super Joe can smell the medicine a mile away.

Since getting home on Friday he has mostly laid on the floor saying "Ouchy". It is seriously the saddest thing ever. If we can get enough of his medicine in him he perks up, but it's been a major challenge trying to get it in him every 6 hours. For 7 days.  Bubba has been extra cuddly, but also extra angry. Kind of like we are living with a mini Jekyll and Hyde. He will either want you to hold him or he has started scratching my face. It kind of hurts my feelings. But I get it.  Every six hours I force feed him some nasty berry-flavored liquid ibuprofen he hates. I really do kind of get it.

What else? Oh yes-- we found out that Joey definitely can say the word, "No." Ask him any question right now and he will quickly say, "No."

Other than that- he's going to get through this. We will get through this. Lots of people do. Just kind of bummer right now. But friends and family have been super kind with meals, Popsicles, balloons, a mini bottle of rum (thank you!!!) and more- thank you for the kindness and prayers.

I thought 2 weeks off of all his therapies was a bit extreme, but he isn't even at the point where he is able to leave the house, much less exert any extra energy. It is nice to be able to focus on getting him better. 

Hope you have a great week and maybe by the next time I can sneak in a chance to blog, Super Joe will be back to himself!

We have to go to bed because Joey just went to bed 2 hours ago and we have to be up in 4 hours to give him his medicine. Night!


  1. After Kamdyns T&A, she wouldn't drink anything. We always have to force feed medicine too. It didn't matter what I put it in. Her breath smelled so bad too! My other kids kept saying she had pooed. We made it through! I hope Joey is feeling better soon.

    1. It's so funny you say that- last night at 1am we walked into Joey's room to give him his medicine and we both thought he had pooed-- nope! It was his breath!!!:-) You are giving me faith!! Am hoping Joey can rebound like Kamdyn did!

  2. Oh, goodness. I seriously started bawling reading about that scare. So glad it was over quick. Recovery is just no fun at all. Sorry you guys are going through it. It was pure torture to get the medicine to Cora too. Poor little Super Joe.

    1. Hi Leah!!! It was nuts! I hated that Tommy was there during it. :-( How long was Cora on the ibuprofen? We were told 7-10 days. He definitely still needs it now-- just can't wait until he's off of it! Hope Cora is having a great summer!

  3. I've been thinking of Joey and praying for all of you every day! So glad he is improving - slowly but surely! What is it with those little tiger gowns there - they look so stinkin cute!!! ADORABLE!!!!

    1. Margaret-- thank you for all your wonderful advice and help!! He has turned a corner!!!! Wooo!!!

  4. I found your blog through your instagram through a hash tag I was looking through. My older brother has Downs as well. Looking through your pictures I found a screen shot from a book you have read about bringing out the best in people, it is true. My brother has made me a better person for just being him. Many of your pictures (almost literally) melted my heart. :)
    Wishing you and your family all the best!


    1. Oh Caitlin- thank you for sending a note!!! I always wonder how Joey's older brother will feel- hugs to you, your brother and family!!!


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