Since deciding on reinserting the peg, Rob and I have been inundated with advice and comments from all angles, those “for” the reinsertion of the peg and those who think we are totally mad to even be considering it. It really has been one of the biggest decisions we ever had to make, with some of the effects of our decision only being seen in years to come.
Since my last update, Tayden was hospitalised with aspiration pneumonia and dehydration (3rd time in less than 11 days!) and this, combined with the consensus of the diagnosis of failure to thrive of our paediatrician and the paediatric surgeon who has operated on Tayden before, led us to agree to the insertion of the mic key once again. When Tayden was younger, he suffered from what is known as Cricopharyngeal Inco-ordination Syndrome, which basically means that he had issues with his swallowing which would sometimes result in him aspirating whatever fluid he is given. We were under the impression that he had actually outgrown this condition but both doctors believe this is why he isn’t drinking well, in fact just enough to ensure that he isn’t thirsty and then stopping – he is protecting his airways.
In a nutshell, he has learnt that if he drinks he gets sick, so he has basically started drinking only enough to quench his thirst. However, a child of Tayden’s weight (+-11.8kg) needs a minimum of 400ml just for the body to function well and 600ml onwards to ensure good growth etc. With Tayden not having grown in height or weight in 7 months, this is a big problem for us – he simply isn’t getting adequate liquid in.
There have been many people as l say, that are quick to judge and comment about us reinserting the peg, but until you have been in the position where you child LITERALLY hasn’t grown a cm, where you see him on a daily basis struggling to get even 200ml within a 24 hour period consumed, you have no idea how it feels and l really hope you never will have to go through this.
For us, the insertion of this feeding tube is ensuring that Tayden will have a normal life growing up, that his brain will develop as it should and it gives us the opportunity to ensure that he gets in all the vitamins, minerals and calories that he needs to grow. A diagnosis of failure to thrive is no laughing matter and we are taking it very seriously.
With all this in mind and after 5 depressing days of using Tayden as a pin cushion to ensure drips and hydration for him, we set off to Cape Town to see Prof Brown and confirm the insertion. On the bright side, Tayden loved the flight (this child is born to travel!) and it was awesome to see our friends in Cape Town again, who kindly provided us with lots of moral support and a place to stay. Thanks Heidi & JP, you guys were awesome!
Prof Brown explained the operation in detail to us and explained again that we were doing the correct thing in inserting it now, before it is too late or developmental issues can take place. The great thing about inserting a mic key is that it is simply like a button in your child’s tummy and can be used when he hasn’t had enough to drink or enough calories through for the day and when he has had an excellent day, you simply don’t use it. How wonderful is modern medicine!
The insertion took place on Friday, 3rd June and we were amazed at how well Tayden handled the surgery. We won’t talk about the hysteria and utter pandemonium in the operating room that even had the anaesthetist writing in her notes that he was hysterical, we will concentrate on the post op and say it went well. In fact, not once did Tayden complain about pain in his tummy to start with – he left the complaining for the horrific rash that he had on his bum.
Tayden developed a rash that was so bad, that they had to give him a spray on substance that basically formed an artificial skin on his bum to allow his skin to heal. It was so bad that even after the operation, he opened his eyes and told me his bum was sore, not the stomach at all! On top of this, he managed to pick up an ear infection and gastro as well so our journey home from Cape Town last Sunday was a bit of a challenge!
But, we got home and at least managed one night before we were admitted back to St Georges Hospital, compliments of Discovery Health, for gastro and inflammation of his mic key site, with that raw bum and ear infection thrown in for good measure.
Tayden was treated for the gastro and was given intravenous antibiotics for the ear infection and was kept hydrated simultaneously which was great, because at that time the infection in his mic key meant that we couldn’t even touch it without him screaming in pain. He would even wake up from a dead sleep if we touched it.
Murphy just had it in for us it seems, as my car was also broken into while we were guests at St Georges! Using a master key, the thief opened my car, stole my wallet and laptop and very kindly left the door wide open, allowing the rain to soak my seat as well. Thanks a lot!
But, it is now Sunday afternoon and things are going better here. As I told a colleague l saw at the shops this morning, it HAS to go better! Things cannot continue like this and Rob and I continue to look for the silver lining in everything. Yes, it is very hard at times to look past things but we must – we are not alone and God would never give us something that we could not cope with!
Right now Tayden is sleeping and l have managed to get in 40ml Pediasure, 30ml water and 5ml stopayne without him waking 100%, his bum is looking better and it looks as if he is sleeping peacefully – already progress from last night when l couldn’t manage to get a feed in. He is out of hospital, we are moving into our new home and he is slowly getting used to having this button in his tummy again…all positive things happening!
We have no idea when we will take this mic key out again, it isn’t even a consideration at the moment. Right now, we are concentrating on getting Tayden 100% well, having him laugh and play and enjoying his life like every two year old should. As a friend says, we just keep swimming and deal with each day as it comes…
Thanks for reading and God bless.