Christopher is once again, re-writing his story and failing to mention his plans to us!

He was due to have his lip repaired tomorrow afternoon, but with his GERD, he has been continually “micro-aspirating” his feeds, which have disrupted his breathing.

The Anaesthetic Doctor is not comfortable with putting Chris under a General Anaesthetic, with his breathing problems, especially seeing as he is already a high risk because of his cardiac problems.

So the gastrostomy tube has been pushed further down, past his pyloric valve (by-passing his tummy) so his feeds go directly into his small bowel, and hopefully reduce the reflux and aspirations. Hopefully, with this done he will be happier and his breathing will improve and we can get his lip fixed and get him home. Unfortunately this also means that Christopher coming home is also delayed by 2 more weeks.

His PIC line will also be removed tomorrow and a new one will be inserted the just before his lip repair, but under the one anaesthetic.

Christopher has to have a gastrojejunostomy (G-J Tube) tube put into his tummy to replace the gastrostomy tube. A G-J tube by-passes the stomach and goes through the pyloric valve, directly into the small bowel. The reason for this is because Christopher has bad gastroesophageal reflux disease (GERD) , which upsets him (think heartburn/ indigestion) and lowers his oxygen saturations. The only other way to get past this is to give Christopher IV Fluids in replacement, but then he will not continue to grow.

Christopher’s PIC line has collapsed and he will have this replaced when he has his lip repair to limit the amount of anaesthetics. If you remember, Chris had the PIC line inserted as he has shy veins and needed to have IV access for the Vesticostomy operation and it was supposed to stay viable until his lip operation tomorrow. My poor kid. He always has to write his own story!!

You have to excuse Christopher’s squeaky breathing, he has had it since his Pneumonia.

Christopher had another Chest X-Ray today as when they changed the dressing on his PIC (long) line, it moved slightly and they needed to make sure that it was still in the correct place, internally. I went with Christopher to Radiology and they sat him in this little box to take a front on X-Ray and a side on X-Ray. He looked cute looking at himself in the mirror in the box. He looked curious at the little face staring back at him. Christopher was very good and not a peep out of him, while the whole process went on. Unfortunately I was unable to take a photo as I was holding him upright, so he didn’t topple over.

He is also on thickened feeds, which will, hopefully reduce or cease the reflux that he gets.

Christopher had a good day today - He read his new book on colours and he got to play on the floor for the first time. Lying on his tummy, he pushed himself up with his little arms and did a great job of keeping his head up. Although he was only on the ground about 6 mins, it must of really tuckered him out as he slept solidly for the next 2 hours!!

Christopher also had his casts changed this afternoon. Chris babbled the whole time to the Physio, telling her about his day, it was very cute. I asked the physio how long he needed to have the casting done and she said 4-6 weeks and then he will wear removable splints, which will stay on for 22 hours a day for a few months, then it all depends on how Christopher’s feet respond to the splints in to see if he will also need surgery to lengthen his achilles at a later stage.

It’s Greg’s first Father’s Day today, not that Christopher knew any different