Nan Neilson, Aunty Natalie and Cousin Paige came to visit today. Toby is having ½ ml mummy’s milk every 2 hours, but his little tummy looks, a bit distended, he had an x-ray but it looks like it is just wind, he also had his first poo today, so hopefully that will get his gut moving, they stopped his feeds though for a little while to see if it settles, Toby got his first little dummy today and he really seemed to enjoy sucking on it.
08,06,2009
today Toby had a rough day, he has developed an infection, and has been put on a Oscillating Ventilator, which breathes for him, at about 100 breaths a minute and rather than blowing his lungs up like a balloon it vibrates air down making him look like he has a wiggle. In the morning his umbi line fell out and was replaced by a cannula in his leg, and the Drs also put in a long line, a line that runs from his wrist to his heart, so that he can get the medications that he needs. He weighs around 710g. His milk has also been stopped so that he can have a good rest and get over his infection. Nan Neilson, Aunty Natalie and Cousin Paige went home this morning and Uncle Eric and Aunty Marina came to visit for a few days. He had a little problem with his arterial line as well today, when his nurse tried to take out blood for a test, his toes went all white, his art line was taken out, but his middle toe on his left foot has changed colour and is now a dark purple. Meaning he has an interruption to his blood supply to that toe. Drs are keeping an eye on it to make sure its ok.
09,06,2009
He is looking better today although still struggling with his infection; he is still on antibiotics to help him. The line in his leg tissued or fell out, and he had to have a new one in, the Drs tried to get it in his leg but was unable to so it was put in his little head, doesn’t look too nice but is well worth it, it is less likely to fall out where it is. He also had another blood transfusion tonight and mummy helped to do his cares, wash his face and change his nappy etc. Toby is now having ½ ml mummy’s milk every 2 hours, and his little toe is still purple but doesn’t look like it is getting any worse.
10,06,2009
Today Toby’s milk was increased to ½ ml every hour and in the evening 1ml every hour, and he appears to be tolerating it very well, yummy!
He is making a little noise like a lamb, because of a leak from his Endo tracheal Tube, it is quite cute and sounds like he is telling us a story, his oxygen is being turned up and down depending on how much he needs but is sitting around 25% he is still on his oscillating ventilator and his Dr thinks he will need to stay on this for around a week. He is very relaxed today, but is on a big dose of morphine to help him, think he like having his head rubbed and he had a good long suck of his little dummy this morning. The Drs also had another look at his toe and it is still discolored, the Dr thinks he will have a bit of tissue damage but it will hopefully heal ok, they are still just keeping an eye on it at the moment to see how it goes.
11,06,2009
On mummy and daddy’s first visit this morning, Toby was looking really good, his little toe was looking much better, and his ventilator setting had been turned down, he got to wear the little booties that uncle Eric and aunty Marina had brought for him, very cute! but after a little while Toby started to have some braddy’s which is where his heart rate slows down, and around lunch time he was having a real battle keeping his heat rate up, he was seen by the Drs and they thought that he was just fighting against his ventilator, he was very pale and his little toe started to look really bad. Some of his other toes started to look darker as well as the side of his foot, the doctor ordered a bolus of normal saline to boost the amount of blood that he has and after a little while it seemed to work, and the pink came back to his toes. Toby’s blood sugar level is also too high for him to gain any weight or nutrition form his milk so the doctors put him on some insulin to help decrease his levels. His antibiotics were also stopped as his blood cultures had come back negative. By the time mummy and daddy went back in the evening to see him he was doing much better, was much pinker and very active, The cannula in his head was taken out as it had tissued. Mummy and Daddy think that it won’t be long until he opens his little eyes as he is making some very funny facial expressions.
12/06/2009
Today Toby come off the oscillating ventilator his toe is looking much better, still a little black but starting to get some pink underneath. He had to have his tube replaced as there was a huge leak and he was doing most of his breathing on his own and when they replaced it the first time they used the same size tube, which was too small and still leaked, so later they had to change it again to put in a bigger one. He was put on insulin as his blood sugar levels were too high, and he would not put on any weight if they stayed high, he also had to have another cannula put into a vein in his head so that he could have the drugs needed to change his tubes. His long line is still in place in his left hand and he had the humidity turned down in his little home as his skin is better now his is getting older. He is on 0.5ml of milk via continuous feeds.
13/06/2009
Toby’s oxygen sats have been swinging between either too high or too low most of the day, The doctor says that this is to be expected as his lungs are still immature, his blood sugars have been more stable but he is still needing his insulin, he is now on 1ml an hour again via continuous feed through his nasal gastric tube, but is having a few refluxing episodes, where the milk runs back up his throat. His morphine infusion was turned town to half the dose he was having to help prepare him to come off the ventilator, the Doctor thinks in a few days he may be able to try CPAP, (continuous positive airway pressure) instead of his ventilator but they want to be feeling pretty positive about trying this first after only lasting such a short time last time. Mum and dad think that he looks like he is a bit bigger today, and his nurse Jodi agrees.
14/06/2009
After a bit of a rough week with an infection Toby is starting to do much better he is off his special oscillaiton veintilator and back on to his normal one, and they are starting to wean him off that too, so hopefully in a few days he will go on to CPAP, which will keep his lungs slightly inflated but he has to do all the breathing himself, much better for his lungs, he still hasnt opened his eyes, but is soo close, daddy has to go back to work tomorrow so he unless Toby opens them in the next few hours Daddy will miss out. Im bettin he will open them soon after daddy leaves! cheeck boy that he is! anyway, just adding a few pics for you all, he hasnt grown much but he is looking really good today.
After a bit of a rough week with an infection Toby is starting to do much better he is off his special oscillaiton veintilator and back on to his normal one, and they are starting to wean him off that too, so hopefully in a few days he will go on to CPAP, which will keep his lungs slightly inflated but he has to do all the breathing himself, much better for his lungs, he still hasnt opened his eyes, but is soo close, daddy has to go back to work tomorrow so he unless Toby opens them in the next few hours Daddy will miss out. Im bettin he will open them soon after daddy leaves! cheeck boy that he is! anyway, just adding a few pics for you all, he hasnt grown much but he is looking really good today.
Daddy went home today to go to work, he will be back on Saturday, Cousin Paige has come to stay with mummy to keep her company while daddy is away. Toby still has not opened his eyes, mummy though that he would open them just after daddy left but no, Toby had different ideas, he’s probably waiting for him to get back, he is still swinging whit his 02 sats but is otherwise quite stable.
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