G Tube!

Wednesday morning we made our way to Sick Kids for Jake to be admitted for his laparascopic Gastrointestinal Tube with Dr. Pierro.  Jon and I were sick to our stomachs with anxiety and worry - all Jake's other procedures have been life saving, and there was no choice about him needing them.  This procedure was different - it wasn't life saving.  I guess you could say it was quality of life saving.  The other huge difference was Jake's maturity - Jake has developed an intense fear of nurses and doctors as a result of this surgery.  All a nurse needs to do is walk into the room, and Jake immediately starts screaming and saying "no."  They don't even need to touch him! I swear he gave his lovely, caring medical team complexes with all the fear he showed towards them.  I was very thankful that we were given the option of having a mild sedation done on Jake in the waiting room so that he was calm in our arms before they took him back to the operating room.  Jake went into the OR with his beloved blankie and a picture of Georgia, they were beside him on the table for the procedure.  I told him before the nurse took him back - "Sister is going to be with you the whole time", and Jake responded with a very serious sounding "okay" :) My sweetheart.  Here we are in the waiting room, you can see the anxiety on Jake's face - he knew something big was about to happen.

The OR waiting room is not a easy place to be.  Every person there is so worried and anxious, it's a very gloomy room to be in.  Thankfully the procedure took only 1.5 hours and Jake was extubated before he came out of the OR.  When we were finally able to see him he held up both hands to me, and then fell back to sleep.  A few minutes later he opened his eyes and Jon said "Hi, little guy", and Jake lifted his hand and waved to his Dadda.  So sweet.  Here he is still in Recovery and very sleepy.  I had asked the nurse to make sure he had his blanket when he woke up, I'm so thankful she remembered that.

 



After a short time in Recovery Jake was moved to 5B Stepdown, and spent one day there.  That's a hard room to be in because there are 5 other beds, and each of them held another child including two infants - Jake couldn't sleep well with all the noise and lights.  Add in to the mixture that Jake was NPO (Nothing Passes Orally - he wsn't allowed to eat or drink) for that whole day and half of the next day, and it was a rough couple of days.   Day 2 after surgery Jake had tylenol for his pain at 6 am, and that was the last dose he needed.  It's really awed me how strong he is, once again.  There were two incisions besides the G Tube area, and Jake seems to only feel discomfort or pain if we are cleaning the area/bandaging or it it's impacted in some way.  We have noticed that if he drops a toy he'd rather have us pick it up then bend down himself - smart boy.  G Tube feeds were slowly started that day, and Jake handled them very well - knock on wood, but since getting the G Tube Jake has not vomited once.  Not once! At this point Jake still had his NG tube in, as they didn't want to pull it out until they knew that he would be able to tolerate feeds by G Tube.  When feeds started, out came that NG Tube - in fact, I pulled it out myself! That was such a happy moment for us.  My sweetheart is amazing.  I love him so much - here he is showing some love to his Dino baby...

   Day 3 after surgery Jake was able to work up to his full feed amount of 1000 ml of liquid and his IV got removed.  He visited the playroom and the cafeteria with us and then we were discharged around suppertime to go back to Ronald Mcdonald House.  This was both awesome and scary at the same time, as Jon and I became responsible for caring for Jake's wound, and the cleaning/bandaging process.  It's so scary handling the tube and untaping the bandages - it's not very secure until it heals.  It would be easy to pull it out - and it's a long tube so Jake could pull it out also if he got a good grip on it.  If that happened, the site would close over in minutes and we'd be back to square one.  We have been given the option of getting a Mickey Button placed in six weeks to replace the long tube that is now there.  We're seriously considering it, and hoping that that can be done in St. John's.

I asked Jake yesterday where is your tube, and he reached up and touched his cheek then looked puzzled...today I asked him where is your tube and he lifted up his shirt and showed me :) He gets it now.  Some of you are probably wondering what a surgical G Tube looks like, well this is it.  This is 4 days post op so the sites are still very fresh.  It's not as scary as it looks, but it's a big tube on a little body so it's very prominent in the pictures.

When doing a feed, this is what it looks like hooded up to his pump...

 Tomorrow morning we are doing the G Tube parent class, a four hour class that will teach us everything we need to know.  Baby Owen's Mom Grace is babysitting Jake for us so that we can do this, we are so thankful for that.  And then, on Tuesday we get to go home! This was a much shorter stay then we expected and it has been straightforward like we prayed it would be.  Once again we have answered prayer, once again we have so much to be thankful for, once again God has proven that He is in control.  And now...we can see all of Jake's beautiful face every single day.  I can't wait to see what Big Sis Georgia thinks of that...