Well the time has come for us to take Cruz in for his "big op" we have been mentioning in previous updates. He is finally well enough to go in for major surgery, and has got a decent amount of weight on and this surgery is planned for once. The date for surgery is Friday, 20th February 2015 up at the new Children's Hospital in Brisbane - Lady Cilento Children's Hospital (LCCH). The same surgeon, who has operated on Cruz since he was 3 weeks old is doing it, along with another consultant level surgeon. This operation is going to take them all day and they have only booked Cruz in for the 20th.
This is huge surgery and one to give Cruzs' stomach a chance to work on its own and prove whether or not it can actually work once everything has been fixed; or whether he is just someone whose stomach will never work and then we will have to go back to what we are doing with him 90% dependant on TPN and 10% feeds of formula through the tube going into his bowel. This is a huge decision for Nath and I as this operation is life threatening; but so is the way he is living now as a child cannot live forever on TPN especially when you are as reliant on it as Cruz is; We believe we need to take the leap of faith and give Cruz every opportunity he can to see if his body will work if it has a helping hand and surgery that works - and then it is up to Cruzs body really to let us know what it can do/handle...and then we will go from there. And also we want Cruz to have a quality of life as well, as at the moment he is hooked up to machines 24 hours a day. At this stage he cannot sit, crawl or walk, so it is relatively easy to keep him connected no problem and the machines are just a piece of him that gets carted everywhere we go, or on a pole that gets wheeled around our house/his bedroom etc.
The goal after having this operation is that his stomach will empty faster (as one of his many problems is that his stomach doesn't empty and that is why he just ends up vomiting anything that is sitting in there ,hence the free drainage tube in his nose draining everything from his stomach and it has a little container on the end of it); that fluid/food down the track will flow through his body freely and without any kinks after they go in and cut away all of the scar tissue in his bowel area and straighten out the current kink in his duodenum; that he wont be able to vomit up as much with the narrowed oesophagus; and that we will be able to actually put his formula into his stomach rather than his bowel (which is where the current tubing sits in and we feed him so we are bypassing the stomach) which in turn would mean we can do bolus feeds which are like a "normal feed of milk" say for example 60mls goes in via the machine into the tummy over a 30 minute period and then we disconnect him from the machine for three hours so he has that free time, and then we hook him up to the machine in another 3 hours and do the same thing - so he's only hooked up for 30 minutes at a time and then is free for 3 hours to roam around with no machines attached - rather than like now 14 hours attached to TPN machine and then 10 hours on his feed/formula machine. The absolute goal would be to eventually get him off the TPN and on feeds only - and then he can also have his central line in his chest taken out and then no risk of line sepsis and infections and less risk of blood clots happening again too.
On 20th February:
-Crus will be put off to sleep and placed on the ventilator (breathing) machine. They will cut open the scar along Cruzs tummy (that has been re-cut open 5 or 6 times now...) and remove everything from his stomach down to his bum basically. They will then go through his intestines all and un-pick it all and start again and get rid of the scar tissue that has built up after each operation in there.
- They will straighten out the kink in the duodenum area by making a few incisions and stitching together and opening the area up as they explained it like a kinked hose.
- They will do a pyloroplasty which is layman's terms is enlarging the opening through which the stomach contents are emptied into the intestines allowing his stomach to empty more quickly.
- They will do a fundoplication which is where the upper curve of the stomach is wrapped around the oesophagus which is to help aid the acid from backing up into the oesophagus as easily and then vomiting it up.
- And they will also insert a Gastrosotomy Jejunostomy into his stomach so it will have two ports - one where I can drain stomach if all of this doesn't work, or if it does work I can feed into the stomach; and another port which goes further down into the bowel where I can feed if the stomach cannot handle it (which is where his current J-tube is sitting and we feed his formula in to.)
He will go straight to ICU after this op and they wont wake him up (take him off the ventilator) for at least a day or two and the ventilator will breathe for him. It is then recovery time, and weaning off drugs time, and all of those horrible things that we have watched him go through so many times before. We have been told that if this operation goes well and there is no bleeding or holes in bowels, leakages etc...then we are looking at being in hospital for around a month at least. I have attached some diagrams so it makes more sense. I will try to keep you all updated as best I can following the operation.
Sorry for the essay.....but want you to all know what's going on.
Lots of love, Tam, Nath and Cruz xxx
