Weight: 13.4kg
Height: 93cm
Favourite Foods: Still nothing
Well it seems like only yesterday that I was updating the blog but so much has happened since then that I guess another update is in order.
Firstly, Tayden has been diagnosed with pneumonia again, this time an “A-typical” strain, basically meaning not the common pneumonia bug. I last wrote on Thursday and commented that he wasn’t well and I had a work function that night, which saw my hubby looking after Tay. I got a message from
him to say that Tay really wasn’t looking too good and how long til I got home. Needless to say, I probably have a speeding fine to add to the growing medical expenses…
Tay was very pale and pap when I saw him and after watching his breathing a while and noting how his nostrils were flaring, how he was breathing with his stomach/ribs and the amount of breaths he was taking a minute, I called our paed and met him at the ER. After some xrays, Tayden was diagnosed with pneumonia and given different medications which would target this specific bug. In true Tayden style (and he seems to be getting good at this!), he vomited in the middle of the ER, much to our surprise. I say surprise because I am still not used to this, after the Nissen Anti-Reflux op he is not meant to be able to vomit!
We headed home and since then Tayden has been doing okay, better at some times than at others but hanging in there and being brave as only our little guy can. We decided not to admit him as there was nothing at that point that the staff at the hospital could do better than we could at home and we knew
what to look out for and could go through and admit him whenever we felt the need. Also, as you know he has a major phobia about hospitals so we try to keep him away as much as possible. The antibiotics seem to be starting to work but he is still very weak at times.
On Friday I got an email from the dietician I am working with and got the “good” news that Tayden is roughly the size of a 2 year old and we have
some serious catching up to do it seems! He should be weighing in at about 15-16kg and about 107cm tall. We have a far way to go it seems, since we are
sitting at 93cm in July, and just under 13.8kg at his heaviest!
We are now adding extra specialized calorie milk feeds (Pediasure) at night, additional to what I have been giving him, and hoping like crazy this is going to do the trick but not upset the eating during the day either. For Rob and I it means back to 3hourly feeds for our little man and since we don’t use a pump like a lot of the other parents do, it means getting up every 3hours to feed and change him. The reason we don’t use the machine is because he is a very restless sleeper and has in the past got the cord wound around his neck.
It is a fine balance that we have to play with and I am hoping we get it right without disturbing his daily oral intake. At this point, we can only go upwards as his oral food intake is very much reduced and for the first time in almost a year I would say, he drank not one mouthful yesterday.
The weekend was quite uneventful until my husband started feeling sick and now I have two sick men in the house! I write this as both my nursing charges sleep – Rob and Tayden both passed out at about 8pm. Rob has come down with horrible flu and a chest infection and I am hoping and praying that he doesn’t reinfect Tayden…so hold thumbs with me!
I sometimes feel that I go two steps forward and six steps back with Tayden. He has been unwell for more than 2 months now, continuously battling viral infections and now another bout of pneumonia.
People ask me why I keep the peg in when there are other “normal”kids out there who sometimes drink as little as he does. Maybe it is our safety net, maybe it is because I have been through it before and know that at times like this, I would have been camping out at Hotel St Georges for more than 10 days already as Tay battles infections and refuses to eat or drink sufficient for his body’s needs. Maybe it is the fact that our paediatrician confirms each time we see him that Tay is by no means ready to let go of the peg and needs it. Or maybe it is the fact that we use that peg EVERY DAY to give him additional fluids and I know that he cannot survive properly without it. Whatever the reason, Tay NEEDS this right now. I don’t know why, I think there is a part of me that has stopped asking. I just try and keep my head down and keep swimming, try to do my best as Tayden’s mom as I work full day and try to
make ends meet, try to be the best mom, wife, sister, daughter and friend I possibly can be.
I HATE seeing Tayden suffer. I hate seeing him in pain. I hate the fact that I need to feed him every couple of hours at the moment to ensure he gets the nutrients he needs. And most of all I hate the way that people judge him before they get to know him. When will people be educated about feeding
pegs? Will that ever happen?
For the first time in a long time I can say that I am not seeing the light at the end of the tunnel. I am tired, my boy is tired and we need a
break. When will that come? I don’t know. All we can do until then is keep
swimming.
Thanks for reading
Brene
Height: 93cm
Favourite Foods: Still nothing
Well it seems like only yesterday that I was updating the blog but so much has happened since then that I guess another update is in order.
Firstly, Tayden has been diagnosed with pneumonia again, this time an “A-typical” strain, basically meaning not the common pneumonia bug. I last wrote on Thursday and commented that he wasn’t well and I had a work function that night, which saw my hubby looking after Tay. I got a message from
him to say that Tay really wasn’t looking too good and how long til I got home. Needless to say, I probably have a speeding fine to add to the growing medical expenses…
Tay was very pale and pap when I saw him and after watching his breathing a while and noting how his nostrils were flaring, how he was breathing with his stomach/ribs and the amount of breaths he was taking a minute, I called our paed and met him at the ER. After some xrays, Tayden was diagnosed with pneumonia and given different medications which would target this specific bug. In true Tayden style (and he seems to be getting good at this!), he vomited in the middle of the ER, much to our surprise. I say surprise because I am still not used to this, after the Nissen Anti-Reflux op he is not meant to be able to vomit!
We headed home and since then Tayden has been doing okay, better at some times than at others but hanging in there and being brave as only our little guy can. We decided not to admit him as there was nothing at that point that the staff at the hospital could do better than we could at home and we knew
what to look out for and could go through and admit him whenever we felt the need. Also, as you know he has a major phobia about hospitals so we try to keep him away as much as possible. The antibiotics seem to be starting to work but he is still very weak at times.
On Friday I got an email from the dietician I am working with and got the “good” news that Tayden is roughly the size of a 2 year old and we have
some serious catching up to do it seems! He should be weighing in at about 15-16kg and about 107cm tall. We have a far way to go it seems, since we are
sitting at 93cm in July, and just under 13.8kg at his heaviest!
We are now adding extra specialized calorie milk feeds (Pediasure) at night, additional to what I have been giving him, and hoping like crazy this is going to do the trick but not upset the eating during the day either. For Rob and I it means back to 3hourly feeds for our little man and since we don’t use a pump like a lot of the other parents do, it means getting up every 3hours to feed and change him. The reason we don’t use the machine is because he is a very restless sleeper and has in the past got the cord wound around his neck.
It is a fine balance that we have to play with and I am hoping we get it right without disturbing his daily oral intake. At this point, we can only go upwards as his oral food intake is very much reduced and for the first time in almost a year I would say, he drank not one mouthful yesterday.
The weekend was quite uneventful until my husband started feeling sick and now I have two sick men in the house! I write this as both my nursing charges sleep – Rob and Tayden both passed out at about 8pm. Rob has come down with horrible flu and a chest infection and I am hoping and praying that he doesn’t reinfect Tayden…so hold thumbs with me!
I sometimes feel that I go two steps forward and six steps back with Tayden. He has been unwell for more than 2 months now, continuously battling viral infections and now another bout of pneumonia.
People ask me why I keep the peg in when there are other “normal”kids out there who sometimes drink as little as he does. Maybe it is our safety net, maybe it is because I have been through it before and know that at times like this, I would have been camping out at Hotel St Georges for more than 10 days already as Tay battles infections and refuses to eat or drink sufficient for his body’s needs. Maybe it is the fact that our paediatrician confirms each time we see him that Tay is by no means ready to let go of the peg and needs it. Or maybe it is the fact that we use that peg EVERY DAY to give him additional fluids and I know that he cannot survive properly without it. Whatever the reason, Tay NEEDS this right now. I don’t know why, I think there is a part of me that has stopped asking. I just try and keep my head down and keep swimming, try to do my best as Tayden’s mom as I work full day and try to
make ends meet, try to be the best mom, wife, sister, daughter and friend I possibly can be.
I HATE seeing Tayden suffer. I hate seeing him in pain. I hate the fact that I need to feed him every couple of hours at the moment to ensure he gets the nutrients he needs. And most of all I hate the way that people judge him before they get to know him. When will people be educated about feeding
pegs? Will that ever happen?
For the first time in a long time I can say that I am not seeing the light at the end of the tunnel. I am tired, my boy is tired and we need a
break. When will that come? I don’t know. All we can do until then is keep
swimming.
Thanks for reading
Brene