Rob and l are so excited about the prospect of so many people getting to hear about feeding tube dependency. We were quite nervous to do the interview at first but realised that if we could help just one child or one parent in getting assistance for their child with feeding tube dependency, it would have been worth it.
There is nothing as depressing, demotivating or plain distressing as having a child that wont eat. It is something so normal, many people don't even think that having children that dont eat exist, but it does. I have been there, l have known the dispair of having Tayden not eat and drink for days on end, of having him hospitalised yet again for dehydration because he didn't drink enough.
And then, after being diagnosed with GERD (reflux)and failure to thrive Tay had his feeding tube inserted and we thought we were home free. Nobody mentioned that he would become so dependent on the tube that he would in essence forget how to eat and drink independently. Nobody mentioned that this lack of eating would also result in our child falling behind in his speech milestones, nobody mentioned that the insertion of the peg would affect him so badly that he would not go onto his tummy at all, that he would therefore never learn how to kneel or do other basic things that children do and would result in him having to have some OT to teach him how to do these things.
Teach a child to kneel? I am kidding right ? Nope, not at all. I didn't even realise he wasn't doing this, he copes so well and has mechanisms in place to aid him and be able to complete tasks without having to kneel that l never noticed - until it was pointed out to us. The reason he doesn't kneel? Since the insertion of the peg he apparently likes his centre of gravity lower and therefore feels out of balance so to speak with the peg in... He has also only ever been on his stomach once since hte peg is inserted and that was mere days after the operation and he then fell onto his tummy - and never again. We now have Ingrid trying her best to get him onto his tummy, kneeling and on his hands on knees. Sounds simple? Hmm...not sure Ingrid would agree with you but come visit us tomrorow morning at 10am and you can see how we are doing! Jokes aside, we are making progress but honestly, we had no idea that inserting the feeding peg that kept our child alive would have the consequences that is does. We are very blessed that all the consequences are reversible and treatable with therapy but we had no idea of the journey that lay ahead for us when we inserted this feeding tube.
Nobody mentioned the infection upon infection our child would be prone to have and therefore the copious amounts of time we would spend in hospital. Nobody warned me that l would once again feel utterly helpless to help my child and in the end would have to raise R180 000 to take him to a clinic in Graz, Austria to get him to eat again.
And here we are now. Thousands of kilometres from home in a foreign country, alone with Tayden and far away from family and friends as we help our little man eat again.
How is he doing? Fantastically! We are so pleased and everyday Rob and l sit in amazement and watch how he deals with the challenges that are placed in his path. At the moment Tayden is passing this feeding program with flying colours and although we know that there may be obstacles that still come in the next week or two, there is no reason whatsoever why we cannot expect him to be tube weaned when we return home on 1st November!
Fully. Tube. Weaned. Those words put a smile on my face. I cant help it. Everytime l even think about it, l start to smile. And speaking about being fully tube weaned, we had a visit from Prof Scheer this morning. He wanted to know how we were doing and how the weekend was with Tayden, he confirmed again that Tayden had had his last tube feed on Saturday night and expressed his pleasure in the fact that Tayden had not only maintained his weight but actually gained 100gm. So where does this take us? To the question with the double edged sword - So what do you see happening with the peg?'
For me as a mom, this causes a dilemma because of course l want what is best for Tayden but also want to protect him from any possible unnecessary stress or pain - BUT we came with the sole intention of getting this feeding peg out, to wean Tayden. But what if? What if Tay gets a cold and stops eating? What happens if he just stops again, for no rhyme or reason? What happens if he needs medicines and l cant get them into him? What happens if he doesn't drink enough? What if...?
And then l remembered what someone l trust with Tayden 120% said to me - Tayden's peadiatrician Dr Purchase. He told Rob and me, 'If they want to take it out, you take it out!'
So that is what I told Prof Scheer - when you feel Tayden is ready and able to maintain himself and the time is right, we will take out the peg.
And here comes the funny part - Prof Scheer told me he is not worried about Tayden in the least, he knows he is going to be just fine but will give Rob and me until next Monday to get used to the idea and then it will come out. LOL...
So Monday it will be if all goes according to plan. I cant believe it. I think l have mentioned it before but there is a tradition in Graz of taking the child's feeding peg and dropping it in the river, the whole concept of out with the old and in with the new. And we are going to be experiencing it on Monday. Wow!
No more tube infections, no more visits to the hospital when the peg comes out at 2am and we didn't see it so the gastrostomy hole has closed from the inside and Tayden now requires surgery. No more syringes, no more ANYTHING tube related! How wow is that!
But the most wonderful of all is watching Tayden walk around clutching a bottle of milk and then stopping to have a swig and then continuing on his way. Nothing compares to Tayden ASKING for a chip today or throwing a temper tantrum in the middle of the Billa because he wanted a TUC biscuit. And nobody told me how happy l would be about all of this as people around me probably thought what a badly behaved child l have.
And through all this Rob and l thank our Lord and Saviour Jesus Christ who has carried us through all this. The Bible says ask and you will receive. We came to Graz and asked for a miracle - and each day here we are living it as we see our little man get better and stronger and more independent.