This week is feeding tube awareness week. As a baby Freddies feeding tube was a massive part of his life, it was his way of staying alive. Without it I don’t know where he would be now.
Since birth Freddie was a bad eater, but for the first few weeks of his life I manged to get enough milk into him to keep him satisfied. At 8 weeks old Freddie was hospitalised as he was very underweight and had blood in his nappies. He was diagnosed with a milk protein allergy and reflux. As his weight had dropped very low we had to start feeding Freddie via an ng tube, an ng tube is placed up the child’s nose and goes into their stomach.
Freddie had always had problems sucking on his bottle but it was now becoming more obvious that the problem was so bad it was preventing Freddie from taking enough milk. The ng tube was only meant to be temporary. We expected it be there for a few days until the doctors could help Freddie learn how to feed from his bottle properly. Several different feeding specialists tried to show us different ways to feed Freddie but nothing worked. So after a few weeks in hospital we were discharged home with the ng tube in place.
Freddie would constantly pull the tube out. We would end up down the hospital nearly everyday getting it sorted. Repassing it was so hard due to Freddie having such small nasal passages. He would have to be pinned to the hospital bed while the nurses tried to get the tube up his nose. He would turn blue as he struggled to breath and would get so distressed. The tape also irritated his face and his skin would go so sore.
For us the ng tube was a bad experience. Freddies feeding wasn’t improving and we were advised to have a more permanent feeding tube put in. So in January 2011 Freddie had his first gastrostomy operation & had a peg inserted.
The peg made life alot easier. No more pinning my son to a hospital bed while nurses struggling to repass a tube, no more sore, burnt skin and no more tape covering up his beautiful face. But we didn’t like having the tube dangling around all the time. It became a bit of a pain, Freddie would pull at it & it kept getting caught on things and we became worried about it being pulled out. So 6 months after the peg operation we took the next step to have another operation to have a mickey button fitted.
Having the mickey button made life alot easier. We were so glad we made the decision to have it done.
Freddie’s feeding has improved so much over the past few years but we do still rely on the tube not just for food but for his fluids and medicines too.
To me and my family Freddie’s tube is so normal and it’s not a big deal. Although looking through the pictures of our ng tube days brings a lot of hard memories back.
I do wonder where we would be without these tubes. Freddie simply couldn’t feed and without food he couldn’t thrive. So if he couldn’t thrive he simply couldn’t live. So to us the tubes are lifesavers.
Since Freddie was a baby a team of genetic doctors have played a big role in trying to help find what syndrome Freddie has. They have done various different tests on Freddie but all have come back normal leaving him a bit of a mystery to them.
Today we had an appointment at the hospital to meet with the genetic team. Genetics appointments can be very full on and hard for parents to sit through and today’s was no different and I spent most of the appointment wanting to cover Freddie’s ears so he didn’t have to listen to all the things that were being said about him.
Alot was discussed in the appointment and it’s very hard to take everything in but here’s a quick overview of what happened –
I’ll start off with the negatives of the appointment – Freddie being stripped to his nappy while the doctor pointed out to us all of his dysmorphic features – and there was alot! Right from the tips of his toes to the top of his head. Every little detail of what is wrong with Freddie was pointed out, an incredibly hard thing for a parent to listen to about their child. Hearing a doctor tell you your child’s brain is wired wrong and that they have major problems is just heartbreaking to listen to, even though deep down you already know it. But we appreciate all that was done is necessary in order to help find out what syndrome Freddie has and the doctor was very kind and thorough with Freddie.
And the positives – The doctor thinks it is unlikely that any future children we have will be affected and Freddie is just a one off! Which is amazing news for us and will also mean that it won’t be something that Evie carries and could pass on to her children. They obviously can’t tell us for sure until we have a firm diagnosis but it has given us some hope for the future.
Also the doctor is actually going to test Freddie for a specific syndrome!! It’s a new syndrome that has only recently been found but the doctor thinks Freddie has some traits of another of his patients who has just been diagnosed with it. Hes not massively hopefully Freddie has it but thinks its worth testing for. So we will hear back in 2-3 weeks if its positive or not. I don’t know anything about the syndrome but if Freddie does have it we know the other patient is a young adult so he has made it through childhood and his teenage years! And as we know alot of syndromes come with shortened life expectancy so this is a massive positive to us.
A possible new problem was also spotted with Freddie when he was being examined so we will need a referral to the appropriate team and the doctor took some photos of Freddie so he can show Freddie to his colleagues to see if they have any ideas of what syndrome Freddie could have.
The appointment was tough on all of us but particularly Freddie. He really doesn’t like being touched by anybody and was very upset during the examination. So to cheer him up we had a nice bubbly bath and are now having big snuggles before bed.
Our perfect little boy.