Christmas

We were able to finish Tripps distraction on Christmas Eve, and we all had a wonderful Christmas.  Rickys family came on Christmas Eve, my mom and Willie came Christmas day, and then we visited my dad and Pam Monday.  My kids are beyond loved and spoiled, and they both got enough toys to keep them busy for the next year or longer.  We were all just happy to be together.

We have also enjoyed a whole week at home without any doctor appointments! That has been an awesome present for us! And this week we only have to go get the synagis vaccine, and a speech appointment which is an another pretty easy week as well!

All week Tripp has been trying his hardest to get into a sitting position from lying down all by himself, maybe that wont be too far off :)

Home for Christmas

We are so excited! Tripp isn't quite done with his distraction, but tomorrow night after they distract him for the second time we get to go home! We will be doing the rest of the distraction at home by ourselves.  Then we will come in for a check up.  Then in around a month he will have to come back in to have a surgery to remove the device from his jaw.  This is usually outpatient surgery but we will probably stay one night just because we live so far away.

That will be the last surgery he has to have until around a year old when he will have his palate repaired; they will also put tubes in, undo his tongue, and do an abr while he is under anesthesia that time.  And then they very last surgery will be his gtube reversal and this will be just whenever he can eat everything he needs to by mouth.  Hopefully everything will go perfectly from here on out and we will be able to stick to this plan :)

Dec. 17th

This is the 3rd full day of distraction for Tripp.  So far he has done really well.  He is tolerating his whole feeding through his gtube, he isnt interested in his bottle but we are assuming its just because his mouth is still very sore.  He is now only getting some pain medicine 2x a day, this is when they come to actually turn his pins to distract his jaw.  Last night was the first night that he also slept all night long too. 

We are just excited that he is doing so well, and for the most part back to his normal self.  Hopefully everything will go as planned and we will be home for Christmas :)

4th Surgery

Tripp had his 2nd jaw distraction yesterday, which was also his 4th surgery all together.  We made really good time coming down, there was no traffic which is not usually the case.  So we got here and where we were supposed to be about 15 minutes early (1115); and of course like every hospital they were running late.  They finally called Tripp back to preop and then took him back to the OR around 2.  Then we waited waited and waited.  It was around 615 when we finally got the call from our plastic surgeon that he was done, he had done a fantastic job, and anesthesia was currently trying to get him extubated before he went up to the PICU. We then went up to the PICU waiting room and finally got to come back to see him around 830.

His face is pretty swollen, but he was able to come off the ventilator with no problems and was only on 1 liter of oxygen last night and totally off of the oxygen today.  He is still desating while he is asleep, but as we have proven in the past the oxygen is of no help to him with it because of his obstruction.

He is also in a lot of pain, sleeping and resting alot.  He is currently just getting some pain meds, iv fluid (normal after surgery just so he doesn't get dehydrated) and some antibiotics so that he doesn't develop any bug post-op.

Other than that, he is doing great and we are waiting for a bed on a step down peds unit. Plastics is planning to try to move his jaw forward a little faster this time (since he is now older and a little bigger) so hopefully we will be home for Christmas :)

2nd Distraction-Update

Just a small update--Tripp now will have the scans and surgery on Tues.  They can be sure to fit it all into Tuesday and this way he will be intubated one less day.

2nd Distraction

Next week Tripp will most likely have a second distraction.  His plastic surgeon thinks that it is what he needs to improve his sleep apnea and maybe his feeding issues, but first he wants to get a good picture of how his bones and tongue are laying while he is asleep.  To do this, he will be sedated in the OR, if he decides 100% to go ahead with the distraction then he will either do the surgery later that day or the next day.  Say a prayer for him for complete healing :)

On a better note, we decided to switch bottles to the pigeon feeder and he has started to eat from a bottle again! Only about 1/3 of his feeding but much better than nothing! We also went and got his 2nd synagis dose today, and had a visit with his GI doctor which he got a good report from!

Oh and Tripp would like to add a little something of his own
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:)