Sunday, April 6, 2014

The big surgery!

So the big surgery for Taizi was April 1.  We went to Seattle early March 31st for hours of pre-op appts.  He was cleared to go for surgery for the next morning. We stayed with friends about 45min-1hour away from Children's Hospital.  So Dean and Taizi left at 5:30am to head in for surgery.  He was all checked in and good to go. The plan was to do several procedures. The biggest one being the palate repair. #2 getting ear tubes put in. #3 remove these infectious tracts he had on his ear and one on his neck. #3 Creating a eye duct in his eye that doesn't blink/doesn't drain.  Well...first no ENT showed up so no ear tubes and the eye doctor didn't show either so that didn't get done. A little frustrating since there's no surgeries in the near future for him so this means he has to have an entirely separate procedure to get these things done.

His surgery was longer than expected. About 4.5 hours.  The surgeon said it was just a hard surgery because his mouth was so tiny. Dean questioned him on that since it's normally done at 10m-12m not was his mouth tinier than that...? He smiled and said they thought the same thing...however Taizi's mouth is tiny and his tongue is not tiny so it made it very difficult.

They make the palate using 100% soft tissue in his mouth...yes you read that right. They take the tissue from inside the gum line and make a palate. Then at the back of the palate they dig in to find the muscles that never were attached and pull them together. This is done so that if Taizi ever spoke...he would need those palate muscles in place for proper speech. This is where we put the disclaimer in that he's totally deaf. :)

He had to spend a few hours in recovery and when we got to see him he did not look good. He was so pale we thought he looked green. He was definitely looking distressed. I held him in my arm in his crib and he laid back and went to sleep. The nurse said he lost a lot of blood...5oz...which she said was  lot for his size. That's why his coloring was so off.

He settled and slept a long time. Thankful for good pain meds to keep him really pain free. He had a great evening and night and the next day was already looking much much better!

Ready to go home!

Amazing how you can have your entire mouth reconstructed and not quite feel it yet. But we were thankful he couldn't.  

So this tract he had removed from his has oozed since the day we first met him. I've mentioned a few times this odd smell that Taizi has that the doctors have been baffled by.  We have done every test to figure it out but can't get it. The smell can be so strong that you can't get it off your hands or clothes.  Well, his doctor recently mentioned that it smelled like infection. And since this sore is always oozing and the smell definitely is worse at his head level she wondered if this could really be it! We were hopeful.  

Two days after he came home...the smell was so bad. The worst we had ever experienced. Feeling a little disheartened that this was operated on and clearly not the cause...Dean went to hug him and Taizi completely freaked out. Really truly...freaked out!  I mean he cried so hard we knew something was terribly long.  We looked at his ear and It was so grossly swollen .. I mean clearly clearly infected.  We bathed him and I called the on call plastic surgeon in Seattle.  He said he needed to be opened (the surgery site) and scooped out.  Ayyyy.  

Dean headed in to the ER last night with him as I put the kids to bed.  Well...the good news is from entrance into the ER to exit was less than an hour (...coming from Canada...that's crazy!) but the bad news is ... it was a little "barbaric" as Dean would say.  They took the tape of the incision and then concluded the stitches were not visible therefore gone.  (they are dissolvable).  So...they swaddled Taizi, held him down...and the doctor pushed on the swelling. Out comes pus....('s gross I know) and it's squirting everywhere. In this tiny tiny pin hole's squirting out like crazy. In fact...splattered all over Dean's shirt. I cannot even imagine the screaming that's happening as the bath hurt him like crazy. They didn't numb him...nothing.  That's ... sad. I can't help but think if we brought our healthy child in there they would have numbed him...?  Anyway...then he puts antibiotic cream on it, writes a RX and sends them on their way. 

So...I call the surgeon back and he says "ummm the stitches are on the INSIDE" and his tone indicated he was not impressed that the doctor just assumed they would be dissolved when he said it was much too soon. Second...he wasn't impressed they didn't cut him open to fully clean it out.  

So he suggested we give it a day or so with the antibiotics and call Children's Monday morning.  

Oh...the ER doctor said to Dean as he's pushing this out of his head... "wow...its smells really strong!" and Dean agreed.

So. All this to say it definitely got infected. And that he's being closely monitored and we'll follow up in the morning with Seattle. a side think this overwhelming smell has been there since we first brought him home in November 2012...and it was a simply fix.  We have done everything. All but daily anoint him with oil.  It really has been that strong.  Ahhh.  The good news is ... it seems our doctor was right and we should be able to have this completely cleaned out and gone soon. 

As for recovery from the palate surgery...he's on a lot of meds to keep pain at bay. Way longer than Azlan was when he had this surgery...but still...he's clearly in pain b/c we are forcing him to eat and drink.  This is the critical point where Azlan stopped eating and drinking and after several nights in the ER with IV fluids we were airlifted back to Seattle and admitted.  So please pray this doesn't happen and we can keep him hydrated. Taizi loves NOTHING more than that drink and he holds his cup...takes and sip and then won't even swallow it for quite a while so it's definitely hurting.  :(

Thank you for praying for him and us. We are glad to be home and doing well.


  1. I'm praying for Taizi. Your sweet little guy has been through so much. It made me really sad to read about how he was treated in the ER.

  2. Oh, Janice. I'm hurting with you as I read this. He must be in so much pain - but the Lord has done good things by placing him in your family. I'll be praying praying and praying some more for him to continue to recover well. xoxo

  3. A year later, but hopefully someone will be helped by my comment. When there is a pocket of pus, the lidocine/novacaine just won't numb an area. The infection destroys the numbing effect in the meds and the shots themselves cause intense pain. As barbaric as it is - and it IS barbaric, the doctor chose the lesser evil of the two. (I do think he could have chosen some type of sedation, but your Little Guy has other issues that likely prevented his heart issues.) I am curious, did he have MRSA? Poor baby.