Weight: 12.2kg (at least that is up!)
It has been a very hectic couple of days for us so sorry for the lack of update. It all started last week Friday when we arrived home to a very nasty looking peg, oozing a lot of pus and gunk and a most unhappy little guy – very unlike him as you all know!
We called the paed immediately, we have learnt with Tayden that once an infection starts, we need to act quickly. As I said to Rob and my mom, you know you are living in the technology age when you MMS your paed and get a diagnosis! The paed prescribed some cream and seemed to think it would suffice. Needless to say, my mom’s intuition knew better!
…And I was right – we ended up in the emergency room at our local hospital on the Saturday afternoon, seeing the paediatrician on duty. Luckily Tayden knows him well and was calm enough for Dr G to look at his tummy and prescribe some further medications and creams. Dr G wanted to admit Tayden but there was nothing extra that would be done in hospital that we couldn’t do at home, so we decided to keep him at home.
Sunday was a blur of pain for the poor little guy and on Monday I contacted our paed again and informed him that the creams, lotions, antacid medicine, Losec and pain meds were just not working. He prescribed an oral antibiotic and suggested we call the rep to look at the stoma site. The rep came, was horrified by the state of it and has taken pictures of it which have now been sent to experts both locally and overseas to try and ascertain WHAT is up with his peg!
As you might know, Tayden has never had a healthy peg for more than a couple of days at a time, with both this peg and the previous one. It is a cause of major frustration for us, because no matter what antibacterial creams, wipes, soaps etc we use, it is simply a matter of time before it starts oozing gunk and pus and becomes extremely sore, itchy and uncomfortable for him.
They now seem to think that Tayden is actually allergic to a material IN the peg itself, perhaps the latex. This leaves us with major issues of course, since he needs this peg to grow, to keep alive and develop normally. But on the other hand it is just so hard to see him suffer like this with infection after infection. I said to our paed what now? What if he is allergic and he told me we have no choice, we need to keep it in and try to manage the allergy or reactions as they come. Without the peg providing further nutrition and nutrients, Tayden will literally waste away. Must admit that I was very upset when I heard that and cried all the way home in the car – heaven knows what the other drivers on the road thought of this woman in “snot en trane” on the road!
As a mom and a parent, you just feel so helpless knowing that you are doing all you can to help your angel but it is just not enough. He is still suffering, still in pain. I dressed his wound this morning again and thought how unfair it is that this little guy has to go through so much. But through it all he remains so happy and provides us with such joy.
He has picked up the flu as well and is very miserable at the moment but l still managed to get a smile this morning before l left for work. He is being dosed up on so many medications that at times l am not sure he is coming or going, but we need to try and get the infection and reaction under control.
So, we will continue to take it one day at a time. On the downside, due to Tayden needing pain meds and his antibiotics at specific times, he now knows that we feed him through the peg. On the plus side, we are managing to get 225ml feeds in, which provide him with essential nutrients and calories that he desperately needs. He has peaked at 12.3kg and is back down to 12.2kg at the moment, simply because he is not feeling well and therefore not eating or drinking well either. I have also had to buy him new tracksuit pants – whoop whoop – since his others are getting too short – so he MUST be growing!
Below please find some pics l took last night (ignore the date on the camera, l am technologically challenged!). He was just so tired and drugged up, he fell asleep on the couch next to me. Looking at those pics, you would never guess the major fight going on inside that little body…
But no matter what, we will never stop fighting for our precious little man! Love you my angelpie!
It has been a very hectic couple of days for us so sorry for the lack of update. It all started last week Friday when we arrived home to a very nasty looking peg, oozing a lot of pus and gunk and a most unhappy little guy – very unlike him as you all know!
We called the paed immediately, we have learnt with Tayden that once an infection starts, we need to act quickly. As I said to Rob and my mom, you know you are living in the technology age when you MMS your paed and get a diagnosis! The paed prescribed some cream and seemed to think it would suffice. Needless to say, my mom’s intuition knew better!
…And I was right – we ended up in the emergency room at our local hospital on the Saturday afternoon, seeing the paediatrician on duty. Luckily Tayden knows him well and was calm enough for Dr G to look at his tummy and prescribe some further medications and creams. Dr G wanted to admit Tayden but there was nothing extra that would be done in hospital that we couldn’t do at home, so we decided to keep him at home.
Sunday was a blur of pain for the poor little guy and on Monday I contacted our paed again and informed him that the creams, lotions, antacid medicine, Losec and pain meds were just not working. He prescribed an oral antibiotic and suggested we call the rep to look at the stoma site. The rep came, was horrified by the state of it and has taken pictures of it which have now been sent to experts both locally and overseas to try and ascertain WHAT is up with his peg!
As you might know, Tayden has never had a healthy peg for more than a couple of days at a time, with both this peg and the previous one. It is a cause of major frustration for us, because no matter what antibacterial creams, wipes, soaps etc we use, it is simply a matter of time before it starts oozing gunk and pus and becomes extremely sore, itchy and uncomfortable for him.
They now seem to think that Tayden is actually allergic to a material IN the peg itself, perhaps the latex. This leaves us with major issues of course, since he needs this peg to grow, to keep alive and develop normally. But on the other hand it is just so hard to see him suffer like this with infection after infection. I said to our paed what now? What if he is allergic and he told me we have no choice, we need to keep it in and try to manage the allergy or reactions as they come. Without the peg providing further nutrition and nutrients, Tayden will literally waste away. Must admit that I was very upset when I heard that and cried all the way home in the car – heaven knows what the other drivers on the road thought of this woman in “snot en trane” on the road!
As a mom and a parent, you just feel so helpless knowing that you are doing all you can to help your angel but it is just not enough. He is still suffering, still in pain. I dressed his wound this morning again and thought how unfair it is that this little guy has to go through so much. But through it all he remains so happy and provides us with such joy.
He has picked up the flu as well and is very miserable at the moment but l still managed to get a smile this morning before l left for work. He is being dosed up on so many medications that at times l am not sure he is coming or going, but we need to try and get the infection and reaction under control.
So, we will continue to take it one day at a time. On the downside, due to Tayden needing pain meds and his antibiotics at specific times, he now knows that we feed him through the peg. On the plus side, we are managing to get 225ml feeds in, which provide him with essential nutrients and calories that he desperately needs. He has peaked at 12.3kg and is back down to 12.2kg at the moment, simply because he is not feeling well and therefore not eating or drinking well either. I have also had to buy him new tracksuit pants – whoop whoop – since his others are getting too short – so he MUST be growing!
Below please find some pics l took last night (ignore the date on the camera, l am technologically challenged!). He was just so tired and drugged up, he fell asleep on the couch next to me. Looking at those pics, you would never guess the major fight going on inside that little body…
But no matter what, we will never stop fighting for our precious little man! Love you my angelpie!