Home Sweet Home Week 22

09/11/2009

Today is the day that we get to take Toby home. We haven’t told anyone as we wanted to surprise them all even the kids, they are expecting us home but think that Toby is being transferred to Burnie. Not coming home! wow what a surprise our family is in for!  the last 2 nights we were allowed to take Toby back to ronald McDonald House, and everyone was so pleased to see him,  he would have his little graseby apnoea monitor on and it did alarm twice but with a little rub Toby was ok. it was a little frightening for mummy and daddy to have him all to ourselves to care for but we were so brave. mummy had to wake him up through the nights for feeds as he is still too little to wake himself up, and we dont want him to lose any weight.

All three of us went for a short walk into the city to buy som bits and pieces for Toby and Toby had another little apnoea but it was more because of the sun in his eyes, once mummy put a blanket over his pram to block it out he was perfect.   

So today we had to take Toby in to special care to get weighed, he lost a little but not enough to stop us from taking him home. we visited all his nurses and Drs and in a way we were sad when It was time to take him home for good.    dont get me wrong,  we were over the moon,  yet we had made so many friends over this journey and we were leaving them behind,  it was a wonderfully, sad day!

All nervous, we said our goodbyes and loaded Toby into the car to start the four hour trip home. 

Week 21

27/10/2009
After his bad week, he looks alot better and is havinghis hernia op on the 3rd of nov, and all going well he can come home after that, or transferred back to burnie, depending on which dr he has, and how many braddys he has between now and then. 
he has gotten rid of his feeding tube finally as he is now fully breastfed, and having bottles at night, mum is only not gettin over there for 1 feed through the night, as untill he gets a little close to coming home, its a long way to walk at 3am on my own in the city.
he is also going for a walk around the hospital each day in his stroller. and he really like this. we have to take an oxygen tank and a rescussiatation bag and mask. and portable suction exquipment wit us at all times just in case but sofar he has been very good.
He has had cuddles with nan newman and nan and pop neilson, and cant wait to have more.

03/11/2009

Toby had his hernia operation today, all went well and he come back to the NICU extubated. That is off the ventilator. Yay!  If all goes well he can be transferred back to Burnie at the end of the week

Week 20

16/10/2009

Toby has come off the ventilator today, after recovering for the last few days, he has been pretty well sedated. His morphine and midazolam was stopped yesterday morning and he was suppose to come off the ventilator then but he did not wake up so he was left another day. This morning he was wide awake and not liking having the tube down his throat so they took it out at 10.30 and replaced it with some nasal prongs, he did not need the extra oxygen in the end but the prongs were left of to be on the safe side. But in the evening they were removed. Toby had some lovely cuddles with mum and dad. It Turns out the he had an infection in his blood and maybe in his urine, his spinal fluid came back clear, so that is good, he has to have antibiotics for another 3 days but then they can stop. Toby has been a different boy today, he hasn’t had any braddys, or apneas and his oxygen saturations have been good all day, we are all hoping that he can keep this up.

                       

22/10/2009

After a great week, Toby has been moved to Special Care today! Mummy is a bit nervous but he has so far had the same nursing staff. We also went for a walk to Hudson’s in the morning before he was moved, with nurse Jacky, to get all his nurses a coffee. Toby is doing really well, he is allowed to go for short walks with mummy by herself on the 3^rd floor, but we have to take oxygen and a bag and mask with us, he must like the walks as he sleeps all the way through and wakes up when we get back.

If Toby continues to go well, his surgeon has agreed to do his hernia op on the 3^rd of November, and if all that goes well, and we can get him up to full breastfeeds then he can come home a few days after! Yay.

24/10/2009

Daddy got to take Toby for a walk with mummy today in his own pram. We went down to get some lunch and then walked back up zigzagging up the floors to stretch it out a bit longer. Toby was awake this time, and loved it all. He also had his first bottle feed with daddy, both of them enjoyed it very much.

Week 19

9/10/2009

Friday Toby had an even worse day, full of big Braddys, the doctor put in an IV line in his left hand, just in case he didn’t come out of one, as he was having so many. His Doctor is pretty concerned about him at the moment and is thinking about doing a broncoscopy to see if anything is wrong with his throat or lungs, but he said that the equipment used will be to big to use on Toby and he will have to get bigger first. He is now 2430g. They are also trying to organize a MRI but that poses a problem as Toby will need to be sedated for this, which will compromise his breathing, and if he has one of his episodes while they are doing the scan, it will take some time to get to him, and then the pictures will be ruined, and they would have to start over again.  Also Toby’s inguinal hernia has gotten a lot worse and the surgeon wants to operate on it before it becomes strangulated, but that poses a big problem with the anesthetic too as Toby will most likely not handle one too well at the moment, so for now we are just hoping that he will settle down and get better. Daddy comes back down tonight, as we are all a little worried about him.

                       

11/10/2009

A lot better weekend, it seemed as though Toby recovered when the doctor put in his IV. It must have scared him.  He is still having a few little ones but so far they are not quite as scary as they were on Friday night. However his hernia is a lot worse. It will be interesting to see what happens this coming week.

12/10/2009

Not a good day today, Toby started to have some pretty big braddys at 6am and by 10am when the doctors came around he was not looking good. They started him on CPAP, and then he moved to a short nasal tube for CPAP through the ventilator which also delivered him 1 breath every 10 seconds as by this stage Toby was having apneas as well as braddys. This style of CPAP only lasted 10 minutes and he had another big braddy so His doctors decided that it was time to fully ventilate him. He was given lots of sedation and pain relief and intubated. The doctors think that he may have an infection so they took blood tests, and did a urine test, initially they did a bladder scan and tried to get the urine out using a little needle into his bladder, but this didn’t work so his doctor put in a catheter to get the sample. They also sent away a fecal sample and some CFS from a lumber puncture. They started him on heavy antibiotics, and did an ultrasound of his brain. The ultrasound was clear, but by the end of the night it was looking like he has a urine infection, and or an infection in his blood. He now safe on the ventilator and pretty well sedated. Daddy rushed back down from Burnie as we are all pretty worried about him today.

13/10/2009

Toby looks a bit better today; he has been given more sedation as he is trying to fight the ventilator. Which is a good sign as yesterday he didn’t have the energy to fight, however, we want him to rest and let the vent do the work for him so that he can get better so he has been sedated. His blood count is now low at 77, so the doctors have organized for him to have another blood transfusion today. His blood cultures and urine have shown the presence of infection but we will have to wait another day to see what grows. Also his CSF shows some white cells in it. This may be a concern for infection, but the doctors are not sure, as a newborn child could be expected to have some white cells in their CSF however as soon as they are out of the newborn period, and into the infant period they are not suppose to have any, and this can mean an infection in the CSF. The doctors are not sure if Toby fits into the Newborn or the Infant area, but he is on the strong antibiotics to cover him if it is an Infection. Mummy and daddy have also been told that the possibility of a urine infection may have been the cause of him having a rough time of it lately, as they can be brewing for some time before they show themselves. So hopefully when Toby gets better, his braddys settle down.

Week 18

5/10/2009

Another bit of a rough day today, daddy decided to stay for a few extra days as Toby has some pretty big braddys this morning. Mummy and Daddy took, Larissa, Anthony and Aimee to Campbell Town to meat Nan and Pop Neilson so that they could take them home, and daddy can spend some more time with Toby.

6/10/2009

More upsetting today as Toby had some more pretty big braddys, the doctors were talking about some tests to do to find out why he is having these braddys. Hopefully next week he will have a 24 hour Ph probe done, which is a little tube that is placed down the nose to the esophagus, then it records the amount of acid that enters the esophagus, over a 24 hour period, hopefully telling us how bad his reflux is.

7/10/2009

Daddy had to go home today, Toby had a bit of a better day but is still having some pretty big braddys. His doctor has decided to put him on a high flow circuit to try to keep his airways open when he is having the braddys as he seems to be having what’s called a laryngospasm during the episodes, this is where his larynx just closes tightly and no air can get through no matter what the doctors do, and they doubt that they would even be able to get and ET tube through, if they needed to.  This is quite scary as if Toby was to not come out of one of his episodes they can’t breath for him, and it would take a fair while for them to get a iv line in and to give him the relaxant drugs to allow them to help him to breath. He would get pretty starved for oxygen over this time, and might not wake up! Mummy and daddy are pretty scared at the moment,

Week 17

25/06/2009

Still off his CPAP and going great guns, Toby and mummy had a wonderful day today, In the morning we had a beautiful bath followed by a really good breastfeed, Toby didn’t even need a top up, then he snuggled down and both mummy and Toby had a little nap in the big comfy chair.  In the evening Toby had another very successful breastfeed without needing a top up! Mummy is going to ask the doctor about his plans for Toby going home or being transferred to Burnie in the morning. 

26/09/2009

Toby come off his oxygen today and is going great, the doctor said that if he keeps it up he can go back to Burnie early next week.  Yay!!!

28/09/2009

Toby is still off his oxygen, and only having the occasional braddy now the doctors are all very happy as they thought that he may need oxygen when he comes home. Mummy is very happy with him he weighs 2190g and he looks amazing. he is having 2-3 breastfeeds a day. Won’t be long till we get home now.

29/09/2009

What started as a good day ended up being pretty horrible, Toby had some good breastfeeds in the morning, but he had a few big braddys when he was feeding so I decided that he needed a rest from breastfeeding for a while, and then in the afternoon, his doctor found his hernia again, and after talking to his surgeon, decided that they would operate on Monday if Toby was well enough so that he could still hopefully go home at the end of next week. Then at 9:15pm He had a massive braddy that he didn’t pick up from for about 20 minutes, the doctors were about to put him back on CPAP and even had the ventilator at the ready, we nearly lost him as they fought to get his heart rate back up, They are not sure why, but after that his breathing settled back down, with just oxygen, and his wonderful doctor Pete told us that he didn’t need CPAP as this would just upset him more, and a lot of his braddys are from him holding his breath, not from having trouble breathing. Anyway Toby got a IV and his feeds were reduced to half, and he had some bloods sent off to check for infection just in case, although no one really thought he had one.

30/09/2009

Toby has been better today, his feeds are still at half and he still needs a little oxygen but he has been pretty good. The doctor has put off his surgery for his hernia repair until they are comfortable that he will be ok with the anesthetic and he will not be transferred to Burnie until after he has the surgery, so it looks like we will be stuck in Hobart for a little while longer. On the plus side, Nan Newman got to have her first cuddle today, both Nan and Toby really enjoyed it.

Week 16

21/09/2009

Today Toby got another doctor, Pete, he has been really good and listened to mummy, he said that Toby can have up to 4 hours off CPAP in the morning and 4 hours off in the afternoon, if he handles it. He weighed 2130g and his feeds were put up to 30mls every 2 hours. In the afternoon Toby had 2 large vomits, one right before his feed and one right after. And his 2 good nursed Emily and Jane seen both happen and the very pronounced braddys that followed both. They mentioned this to doctor Pete on the afternoon round and he suggested that we stop fortifying Toby’s feeds with the Pepti Junior and thicken his milk instead to try to prevent him from vomiting. He also come to have a talk to mum later in evening and told mummy that he thinks his braddys may be reflux related. YAHOO mummy was so happy that someone was listening, and all evening Toby was a perfect baby! He also said that if that is the case he may well not even need the CPAP or NICU.  We will see what happens.

              

22/09/2009

Toby has been a different baby today. The doctors continued with the thickened milk and wow, he hasn’t skipped a beat. All the nurses were so happy with him and he has spent the whole day off CPAP. Pete thinks it is worth giving him the chance to prove himself and see how he goes, so they are not suppose to put him back on unless he gets tired or starts working harder to breath. Nan and Grandad come to visit him today and brought down his bouncer and Toby got to sit in it for the first time. He seemed to really enjoy it.  earlier last week we were told that he would be longer than another 8 weeks. and i was not happy about that,  but this week we have a different doctor and he is working harder to help toby,  and so today he has had 11.5 hours and counting off the CPAP! and we are hoping for him to stay off. he has started thickening his feeds and this seems to have settled down alot. he is now 2130g which is almost a normal baby's weight,    we are hoping that he can stay off CPAP and be home alot sooner than the 8 weeks we were told.

24/09/2009

Toby is still off his CPAP and doing really well. He has had about 1 big braddy a day but otherwise he is breathing fine. His other doctors and nurses are all a bit nervous as he was not weaned off slowly like they would have liked but mummy and doctor Pete both have faith in him. Keep up the good work Toby!