Monday, October 31, 2011

Nissen wrap and Gtube or BUST!

Well on Wednesday morning we headed to TMC for Rylans most serious procedure yet.  We got there and they took us straight back to the tiny little rooms you wait in till they take you away. Steven went ahead and got Rylan in his gown while I talked to the nurse and handled the paper work.
  Well low and behold we weren't let down.....the nurse said there was an issue with his number for this procedure and couldn't continue till it was  here we wait another 20 min for them to "make phone calls" to get it fixed. Once that was finally adjusted the anesthesiology came in and talked to us....meanwhile Rylan is doing really good for not having anything to eat or drink.  Well he came in and went over everything and then tells us he ordered a breathing treatment as a precaution For rylan. ok.....
   Rylan gets his breather and is PISSED.  in comes Dr. O'Conner who gives us our info and lets us know how the surgery will be planned out and how long.......Then we say goodbye to Rylan and go wait....

Steven, my mom and I all find seats in the empty waiting room and sit. We crack a cheap game of trivial pursuit...and 2 hours creeps up I start getting really ansy........and when I start to get REALLY nervous.....out walks Dr. O'Connor.
   Well she tells us how good the surgery went...and gave all the details we needed. One of the things we learned was Rylan WAS indeed refluxing which he NEVER showed any signs but his esophagus was short and showed some damage.  And now we wait to get taken back to recovery.  After an hour I cant take it anymore and go ask about him....they decide to let us go back.
    Of course Rylan is still waking up but the recovery nurse was nice enough to let me get beside him....and ask if we wanna see his belly.  Of course we did!
Rylans new scars
and yes they looked painful.........I worked on getting Rylan to open his eyes and they took us to his room....into the ICU we go!

Once we were settled the doctors came in to give us the game only complaint was his pain killer......morphine. I know alot of you are thinking "he just had surgery why cant he have it?".  Well here is why......Rylan takes an unusually long time to wake up out of anesthesia which in turn affects his breathing.......when you add a narcotic in the mix we have trouble......his oxygen will slip into the lower 80s and they will put him on oxygen which will add more time in the hospital and increases Rylans chances of staying on it due to the fact he breaths real shallow and slow.

Lunch time!
The first day consisted of Rylan resting....the next day they wanted to go ahead and try him on his new food. We waited patiently to see if he would handle it ok....he seemed to do good....then 4 hours later they upped his amount 10ccs.....meanwhile lowering his IV.  Then by 400am the next morning he was off IV! Well Steven and I needed to start learning how to use the IV....We had a couple mistakes......mine was the awesome..spilling of the formula when the tube and syringe disconnect.....but Stevens was the best yet......I cant remember what happened exactly......but he was burping the tube and somehow managed to get stomach bile all over our nurse.(gross I know) But she was such a good sport! After awhile we ended up getting it down like pros

When Rylan started acting better we needed to focus on his breathing...his O2 stats were all over the place dipping way lower then we would like. So we got permission to walk around the hospital.....they said the more we got him up and moving around the quicker his lungs would open and move air....

silly guys

The walking seemed to work great.....he was doing great and was deep suctioned a handful of times.....then i had to demand a breather to get him up where he is supposed to be..and he was doing AWESOME! Our next step in going home was our training......we had to read a lovely yet very helpful book....and a video on how to care for the tube. Then we had our hands on training with a doll on what to do if the tube falls out and how to fix it to be ok to get to the hospital. when we completed that we were free to go!

Our nurse at the hospital gave us a TON of supplies....when we got home we went ahead and put everything away...then it was time to feed Rylan again....well when you feed a child a bolus feeding you use what is basically a HUGE syringe

bolus feeding

Well NOBODY told us there was a cap on the bottom so as we are trying to feed nothing is going down and we are thinking its we both get frustrated and Steven grabs a new syringe and discovers the tip cover......yeah we felt pretty dumb.

All in all after this surgery we have noticed so many changes in Rylan...not only does his stomach no longer bulge out.....but he has been VERY happy! We LOVE it!  The only problem is now im forgetting to do things because I based everything around his previous eating schedule!