Height: 96.8cm (grown 3cm since April – yay!)
Weight: 14.5kg (brilliant!)
WARNING: LONG POST AHEAD….
This weekend has been a really tough one all around, butespecially for our little guy Tayden. Actually, to be honest it is the last two weeks that he has suffered enough to make this mom’s heart break into a thousand pieces again.
Tayden was doing so well, until out of nowhere, at the end of last week he did his usual shut down of refusing all food and drink. That was Friday and we were sure that as it was weekend, we could persuade him in a fun and cool way to eat again, while being with friends etc. It didn’t work. After
not eating at all on the Saturday, he spiked a temp of 38.8’C and we knew something was up. His pegsite also started looking very nasty and after a day or two of complaining his tummy was sore without seeing anything, we now knew why.
Last Sunday morning passed in a blur of temps, medication and a very unhappy little guy, who then started gagging. I called our paed and arranged to
meet him at the hospital as I could see this was some kind of infec that needed antibiotics. Tayden presented with a temp of over 39’C at the hosp and was diagnosed with a double ear infec, throat infec and bad peg infection. So we got antibiotics and thought we were winning later in the week when he started eating again. I was wrong.
Friday I got home to a crying child, lieing on the
floor gripping his stomach, telling me his peg was sore. I called the paed again to see what other cream we could use as an antibacterial since we had just come off an antibiotic and listed all the things
we had tried, creams we had administered etc. He suggested a type of eye drop (yes you read right) and we tried that. It didn’t work, or even make the
slightest difference but in retrospect I was hoping for some type of miracle I guess….
Saturday morning we woke up with Tay standing next to our bed gagging. I don’t think Rob and I have ever moved so fast in our lives before…it
was horrible to watch him gagging and then ultimately vomiting. For those of you that have followed Tay’s story for a while, you will know that he is not meant to be able to vomit, he has had an antireflux op to prevent this. I have, however, for the last 6-8 months told the paed that Tay is not sleeping well after feeds and that he wakes with a ring of milk around his mouth in the mornings, after we have fed him. I think my comments were perhaps not taken as seriously as they could have been, just because we have had other issues.
We took Tay back to our own paed on Saturday morning, after an early morning of vomiting and gagging. Tay walked into Dr P’s room and announced, “Tay VOMIT! Lots!” Dr P just looked at him, then at us, knowing this technically should not be an option.
We explained his symptoms; he had a check up from head to toe and thank goodness the grommet that Dr B couldn’t see last weekend was there and
doing its job! Tay started gagging while he was being examined and then, as only Oscar-winning little boys can, gagging and vomited in the paed’s rooms. I was mortified, although afterwards I was glad that the paed had seen it.
That vomit confirmed what we had been dreading to hear, Tay’s operation for the reflux has been outgrown / come loose / whatever terminology you want to use, but basically it isn’t working anymore. Tay is suffering from major acid reflux again, so much so that it is causing him to vomit, burning the inside of his stomach, oozing out onto the peg site which is why l cannot get it right and why it is so sore and oozing gunk.
We are treating the reflux with the max amount of meds possible, whacking it as best we can, with medication for the gagging and reflux. This medication is costing us R167.26 just for the DAY. This may not sound a lot, but times that by 30 days in a month and it comes to over R5000. That is a lot of money for us and the sad news is that our trust is now completely depleted. Nothing left.
We have been extremely lucky to still have had funds available up until this point but from now on we are going to have to somehow find this money
elsewhere. And as a mom that really freaks me out, as I cannot work any harder that I already am, or my husband is, to try and provide for our child’s needs.
But, we need to trust and pray that God will provide for Tayden’s needs.
Tay’s temp spiked again on Saturday afternoon and as I was concerned, I called our paed again, who confirmed that Tay has now developed a secondary infection as a result of his current condition, infection of throat and oesophagus.
Between these medications that he needs for the next 3 months minimum, plus his specialized feeds, as well as his therapies which he so desperately needs, it comes to close to R8 000 minimum per month, for the next 3 months. This doesn’t include any other visits which may be needed or medication for anything else that may go wrong. After 3 months we will have to reassess and see whether he may need another operation (please no!) or whether we can continue like this and how Tayden is handling things.
Our major problem is that Tayden has stopped eating and drinking on his own again, the pain is just too bad. For us, this is dejavu, as this is exactly what happened when he was 3 months old and he stopped drinking, which ultimately led to the insertion of the peg.
At the moment, I have a little guy who is really sore, down and out just lieing on the couch and dozing or watching TV, rather than being out in
the sun and playing with his dinosaurs! The capiliaries in his eyelids have burst due to the pressure of the vomiting and he has acid rash on his face and chin from vomiting up the acid. Not a happy camper. Eating and drinking –close to zero at this point.
Anyone who has any ideas with regards to some fund raising, drop me a line…as the old saying goes, God helps those who help themselves!
Have a wonderful week ahead…and thanks for
reading!
Weight: 14.5kg (brilliant!)
WARNING: LONG POST AHEAD….
This weekend has been a really tough one all around, butespecially for our little guy Tayden. Actually, to be honest it is the last two weeks that he has suffered enough to make this mom’s heart break into a thousand pieces again.
Tayden was doing so well, until out of nowhere, at the end of last week he did his usual shut down of refusing all food and drink. That was Friday and we were sure that as it was weekend, we could persuade him in a fun and cool way to eat again, while being with friends etc. It didn’t work. After
not eating at all on the Saturday, he spiked a temp of 38.8’C and we knew something was up. His pegsite also started looking very nasty and after a day or two of complaining his tummy was sore without seeing anything, we now knew why.
Last Sunday morning passed in a blur of temps, medication and a very unhappy little guy, who then started gagging. I called our paed and arranged to
meet him at the hospital as I could see this was some kind of infec that needed antibiotics. Tayden presented with a temp of over 39’C at the hosp and was diagnosed with a double ear infec, throat infec and bad peg infection. So we got antibiotics and thought we were winning later in the week when he started eating again. I was wrong.
Friday I got home to a crying child, lieing on the
floor gripping his stomach, telling me his peg was sore. I called the paed again to see what other cream we could use as an antibacterial since we had just come off an antibiotic and listed all the things
we had tried, creams we had administered etc. He suggested a type of eye drop (yes you read right) and we tried that. It didn’t work, or even make the
slightest difference but in retrospect I was hoping for some type of miracle I guess….
Saturday morning we woke up with Tay standing next to our bed gagging. I don’t think Rob and I have ever moved so fast in our lives before…it
was horrible to watch him gagging and then ultimately vomiting. For those of you that have followed Tay’s story for a while, you will know that he is not meant to be able to vomit, he has had an antireflux op to prevent this. I have, however, for the last 6-8 months told the paed that Tay is not sleeping well after feeds and that he wakes with a ring of milk around his mouth in the mornings, after we have fed him. I think my comments were perhaps not taken as seriously as they could have been, just because we have had other issues.
We took Tay back to our own paed on Saturday morning, after an early morning of vomiting and gagging. Tay walked into Dr P’s room and announced, “Tay VOMIT! Lots!” Dr P just looked at him, then at us, knowing this technically should not be an option.
We explained his symptoms; he had a check up from head to toe and thank goodness the grommet that Dr B couldn’t see last weekend was there and
doing its job! Tay started gagging while he was being examined and then, as only Oscar-winning little boys can, gagging and vomited in the paed’s rooms. I was mortified, although afterwards I was glad that the paed had seen it.
That vomit confirmed what we had been dreading to hear, Tay’s operation for the reflux has been outgrown / come loose / whatever terminology you want to use, but basically it isn’t working anymore. Tay is suffering from major acid reflux again, so much so that it is causing him to vomit, burning the inside of his stomach, oozing out onto the peg site which is why l cannot get it right and why it is so sore and oozing gunk.
We are treating the reflux with the max amount of meds possible, whacking it as best we can, with medication for the gagging and reflux. This medication is costing us R167.26 just for the DAY. This may not sound a lot, but times that by 30 days in a month and it comes to over R5000. That is a lot of money for us and the sad news is that our trust is now completely depleted. Nothing left.
We have been extremely lucky to still have had funds available up until this point but from now on we are going to have to somehow find this money
elsewhere. And as a mom that really freaks me out, as I cannot work any harder that I already am, or my husband is, to try and provide for our child’s needs.
But, we need to trust and pray that God will provide for Tayden’s needs.
Tay’s temp spiked again on Saturday afternoon and as I was concerned, I called our paed again, who confirmed that Tay has now developed a secondary infection as a result of his current condition, infection of throat and oesophagus.
Between these medications that he needs for the next 3 months minimum, plus his specialized feeds, as well as his therapies which he so desperately needs, it comes to close to R8 000 minimum per month, for the next 3 months. This doesn’t include any other visits which may be needed or medication for anything else that may go wrong. After 3 months we will have to reassess and see whether he may need another operation (please no!) or whether we can continue like this and how Tayden is handling things.
Our major problem is that Tayden has stopped eating and drinking on his own again, the pain is just too bad. For us, this is dejavu, as this is exactly what happened when he was 3 months old and he stopped drinking, which ultimately led to the insertion of the peg.
At the moment, I have a little guy who is really sore, down and out just lieing on the couch and dozing or watching TV, rather than being out in
the sun and playing with his dinosaurs! The capiliaries in his eyelids have burst due to the pressure of the vomiting and he has acid rash on his face and chin from vomiting up the acid. Not a happy camper. Eating and drinking –close to zero at this point.
Anyone who has any ideas with regards to some fund raising, drop me a line…as the old saying goes, God helps those who help themselves!
Have a wonderful week ahead…and thanks for
reading!