.I do apologise for not posting updates recently, but things have been so up and down and stressful that we have been having a hard time just keeping up with things ourselves.
Tayden has been doing well, and then not so well again with no real pattern for each. Some days he will reach his 200ml “target” with what seems to be ease, other times – like lately – we aren’t even hitting 100ml which is distressing and frustrating since he was been doing so well!
It is frustrating for both us and Tayden, as we desperately need him to drink, in order to be healthy, in order to grow and in order for him to live the normal life of a toddler. He was admitted last week for dehydration due to not hitting his target for 2-3 days. I took him to the paediatrician and he said that Tayden had a chronic ongoing infection, which they narrowed down to being at the stoma (hole where the peg was). We saw a surgeon as well, as between all of this he started leaking more fluid from the stoma but more importantly, at times, blood. Now as any mother will tell you, nobody is happy with blood leaking from anywhere on their child’s body!
We saw the surgeon while Tayden was in hospital and he told us that we would need to operate to close the stoma, quite a large and involved operation which Rob and I were understandably not happy about. We were in two minds as to go the surgery here in PE where we are home and things are familiar for him, or travel back to CPT to the paediatric surgeon and the team that have operated on Tayden in the past. After initially deciding on PE, we changed our minds and prepared ourselves for a journey to CPT, to close the stoma once and for all and move on with our lives.
But fate dealt us another blow in the form of Tayden being hospitalised again yesterday with not drinking sufficiently – in fact we managed to get down about 30ml the entire day. In desperation we even took him through to granny and had a play picnic on granny’s stoep but no-go from Tay’s side. He was admitted in the late afternoon and the paed ran some blood tests, all of which seem to be within normal limits.
However, our paed is not happy at all and says that this is now becoming dangerous to Tayden’s health to continually drink such a little and is against every human self preservation drive, he ignores his thirst and willfully will not drink. So now the consensus is that there is something else going on….which is why Tayden is having a Barium swallow this afternoon. That in itself is going to be very stressful for him, they are going to try to get him to willingly (hahah, who are they kidding!) drink the barium and if not, they will insert a nasal-gastro tube for a short time to get the barium in and be able to do the test.
Rob and I are not sure whether we actually want them to find anything or not – it will be great to know what is wrong with our little man and hopefully have a course of action to fix it, but then again it will probably mean that he is refluxing again which will then in turn mean an antireflux operation re-do and definitely not what we want.
However, the next step seems that if nothing shows up in the Barium, Tay will have to undergo a gastroscopy to check inside his tummy and see what is happening there.
So, at the moment we are running tests to see what is happening with our little guy but it seems that no matter what happens, we will be heading to CPT to see the paediatric surgeon there. Right now it is a case of doing research and tests trying to determine the cause of this before we head out there.
It is immensely stressful for Rob and l as parents, as well as our family as we struggle to deal with a child who is so happy and healthy one day and the next just seems to shut down on his drinking altogether.
Time will tell where we are heading and what is happening. We trust in God to show us the way.
Tayden has been doing well, and then not so well again with no real pattern for each. Some days he will reach his 200ml “target” with what seems to be ease, other times – like lately – we aren’t even hitting 100ml which is distressing and frustrating since he was been doing so well!
It is frustrating for both us and Tayden, as we desperately need him to drink, in order to be healthy, in order to grow and in order for him to live the normal life of a toddler. He was admitted last week for dehydration due to not hitting his target for 2-3 days. I took him to the paediatrician and he said that Tayden had a chronic ongoing infection, which they narrowed down to being at the stoma (hole where the peg was). We saw a surgeon as well, as between all of this he started leaking more fluid from the stoma but more importantly, at times, blood. Now as any mother will tell you, nobody is happy with blood leaking from anywhere on their child’s body!
We saw the surgeon while Tayden was in hospital and he told us that we would need to operate to close the stoma, quite a large and involved operation which Rob and I were understandably not happy about. We were in two minds as to go the surgery here in PE where we are home and things are familiar for him, or travel back to CPT to the paediatric surgeon and the team that have operated on Tayden in the past. After initially deciding on PE, we changed our minds and prepared ourselves for a journey to CPT, to close the stoma once and for all and move on with our lives.
But fate dealt us another blow in the form of Tayden being hospitalised again yesterday with not drinking sufficiently – in fact we managed to get down about 30ml the entire day. In desperation we even took him through to granny and had a play picnic on granny’s stoep but no-go from Tay’s side. He was admitted in the late afternoon and the paed ran some blood tests, all of which seem to be within normal limits.
However, our paed is not happy at all and says that this is now becoming dangerous to Tayden’s health to continually drink such a little and is against every human self preservation drive, he ignores his thirst and willfully will not drink. So now the consensus is that there is something else going on….which is why Tayden is having a Barium swallow this afternoon. That in itself is going to be very stressful for him, they are going to try to get him to willingly (hahah, who are they kidding!) drink the barium and if not, they will insert a nasal-gastro tube for a short time to get the barium in and be able to do the test.
Rob and I are not sure whether we actually want them to find anything or not – it will be great to know what is wrong with our little man and hopefully have a course of action to fix it, but then again it will probably mean that he is refluxing again which will then in turn mean an antireflux operation re-do and definitely not what we want.
However, the next step seems that if nothing shows up in the Barium, Tay will have to undergo a gastroscopy to check inside his tummy and see what is happening there.
So, at the moment we are running tests to see what is happening with our little guy but it seems that no matter what happens, we will be heading to CPT to see the paediatric surgeon there. Right now it is a case of doing research and tests trying to determine the cause of this before we head out there.
It is immensely stressful for Rob and l as parents, as well as our family as we struggle to deal with a child who is so happy and healthy one day and the next just seems to shut down on his drinking altogether.
Time will tell where we are heading and what is happening. We trust in God to show us the way.