Saturday, 31 July 2010

Shower Caps and Percussion

About lunch time today the boys and I headed up to hospital to visit Noah and see how Aaron survived the night. He said he had a shocking night with having to suction Noah a lot, which is actually a good thing as it means things are starting to loosen up - better out than in :)

As soon as Kobe saw Noah, he found his puffer and spacer on the table and decided that Noah needed it!

We have been very lucky to be given meals every day. Usually meals are only for the patients, but the nurses really look after us, and make sure that I get a menu every day so I can order my meals for the next day. If there is ever any left over meals they also make sure that we get them so that the boys and Aaron can also have something to eat. It's great that one of the ladies who brings around the meals loves Aaron - he teaches her boys, and so she looks after us putting extra things on the trays including fizzy drinks for the boys! They won't want Noah to leave hospital! ;)

Today Aaron gave Kobe a choice of food from his plate at lunch time and he grabbed the brocolli!

It was nice to have Jared and Becky and the kids pop in for a visit. They were impressed with the awesome playground and the kids had lots of fun playing in there with the boys.


Of course the kids shouldn't have all the fun, so I thought I'd try out the red car for a spin. Next thing I know, Aaron is up behind me doing some Grease moves!

Two to three times a day the respiratory physios come and see Noah and do lots of 'percussion and vibes' and suctioning to try to clear his chest. It's helping a lot and his physio today was really happy with how much clearer he sounded this afternoon, especially in his lower lobes.

Each day the nurses have been giving Noah a wash using hot, soapy towels and changing his bed. Today his nurse Luke said he would give him a wash and I said how greasy his hair was getting as we aren't able to stick him in the bath to wash it. He said 'that's no problem, we will use a cap!'. He told us that they have these great shower caps that are used for spinal patients a lot. You put it on their heads and it foams up and gives the hair a wash and also a condition and then you take it off and you don't have to rinse or anything, and the hair is washed!! It's quite the look. :)

I didn't believe it would work very well, but it was really good! His hair was much nicer after a wash. This was one of the rare moments when Noah had his eyes (half) open today. It's actually nice to have him sleeping as you know he is resting and hopefully getting well.

His Sats and everything was really good for most of the day today, so we got to turn his oxygen down to 7 litres. They were still staying stable after we turned it down, so hopefully each day we can drop it a bit more and get out of there very soon. I'm thinking it will be at least mid week now though till we can think about going home.

It's nice to see his breathing settle right down. He is now a bit overloaded with IV fluids, and very puffy all over, so now we need to get that sorted, but it hopefully won't take long to settle down.

Friday, 30 July 2010

Slowly Getting There

The last couple of days has been so much better. Noah still isn't well, but he's back to 'normal sick' Noah which is good. It's been a busy and tiring couple of days, and after three nights of not much sleep it's caught up with me, and I'm looking forward to a night in my own bed while Aaron is with Noah. Oh I can't wait for a night with no IV beeping, no nurses coming in and out, and not having to listen to patients up the hall screaming all night (that's a whole other story!).

Noah's Dr came in this morning and said he is so much better, but still has a way to go till we can go home, and that he wasn't working on the weekend so he would see us on Monday...in other words it's going to be at least three more days till he is well enough to go home but I'm expecting longer since he's still on 8 litres of humidified oxygen.

It's not too bad as we are being really looked after well. The nurses have been great and I'm actually sitting back this time and just letting them do their job. Usually I jump in and do everything including giving Noah his meds, but we have had a few nursing students from the uni who haven't really dealt with anyone like Noah before, so it's been a good learning experience for them as they deal with differerent machines, and learning how to PEG feed and give meds down the PEG as well.

In a lot of ways it is a little bit of a holiday as I'm not having to give feeds or meds and don't have to watch the clock all the time or make up his meds, but am actually enjoying being able to just spend time with Noah, while someone else does all that for me.

We have had a lot of visitors including Noah's teacher, Kate who was Jay's teacher last year. She had organised for the kids to make Noah all the cards, and also brought him up a balloon. Aaron was stirring her, asking if she had come to bring Noah some homework to do, and was then saying to her how downhill he has gone since being in her class, making up stories that he used to write and talk when he was in other teacher's classes, and now he just wants to sleep all day as she's such a boring teacher!

Every morning Aaron and the boys arrive around 8am to spend half an hour or so at the hospital with us before school.

Kobe has been loving it as he goes off to the gym every morning with Lisa and Eden, and then they come back to the hospital for a little play. He actually cried when they left yesterday as he wanted to go with them again!

Poor Harri has been struggling the most with it all. Usually it's Jalen who gets a bit emotional when Noah is in hospital, but Harri is really over tired and wishing that we were all at home together. Every night he has been crying as he wants me to come home with them.

Just before he goes to bed he's been on the phone sobbing to me every night saying ' I just wanted to ring you Mummy, because I love you so much and miss you so much'. Kobe and Jay haven't been too worried about being apart. Kobe is just happy to be somewhere 'fun' (for some!).

This photo says it all - the boys waving goodnight to me as they leave the ward. Harri is wishing Noah and I were walking out with them to come home.

Hopefully it will only be a few more days or so, and we can all walk out of the ward together and go home.

Thursday, 29 July 2010

THE talk

It's been a rough couple of days in hospital with Noah. He actually went downhill really quick which has never happened before. Usually once we are in hospital and he starts IV antibiotics and gets on the oxygen he picks up, but for some reason he just got worse, really fast. It was a very long night with Noah struggling to breath, despite being on 14 litres of humidified oxygen. His temp was up all night and he wasn't tolerating any of his feeds or meds, and just vomiting as soon as we gave them to him.

The boys were quite happy to be back at the hospital despite Noah being sick.

It's probably a good thing they see it as a fun place, as they don't stress too much about Noah then.

Kobe loves it up there but was sad when he had to leave and he realised that Noah and I were staying in hospital and he was going home. Aaron said all night he kept wandering around calling out 'mum, mum, mum' and when he came in the next morning he burst into tears and ran to me saying 'mum, mum!' and then saw Noah and had a nervous laugh and pointed to him and was so relieved that we were all back together as a family again.

The Drs were a little stressed and worried and started to talk about ICU and other drastic measures, which we have never had to deal with before. Once Noah's usual Dr came in and saw us he said we didn't need to panic 'just yet' but wanted to try hourly ventolin, a steroid and added another IV antibiotic on top of the first one he was getting. As soon as they started the new treatments, Noah started to settle down straight away.

His Dr came and had 'the talk' to me about what we wanted to do if something 'did' happen. It was the first time we had really sat down and talked about something like this, but he said they needed to know just in case Noah went downhill overnight again. We were saying how lucky we were that it's been 9 years before we had to have 'the talk' together. Luckily Noah's blood gas results came back with great results so the Drs have stopped stressing and are happy the treatments are all working. Things are much better already with his temp and heart rate down, sats up (but still on 8 litres of humidified oxygen) and Noah able to finally rest more as he's not struggling to breath so much. Di came up this afternoon to give me a little break and brought up lots of cute (Hawthorn themed!) cards from the kids in his class.

It's been a busy stay with lots of Drs and nurses in and out all day. Kobe thinks it's great as he's getting to play with Eden lots and spend time up at the hospital.

It's nice seeing Noah back to his 'normal' self - sleeping half the day away and awake for a little while. I told the Drs when Noah is awake ALL the time like he was the night before, it's not good, but when he's sleeping lots and awake for a little while, that it's a good sign that he's getting much better :)

It's going to be a while yet before we get home, but I think we are on the right track :) (and I now have my 'good' camera back with me as I couldn't stand the photos from the point and shoot :) Simone also kindly dropped off her notebook and USB net thingy, so expect lots more blogging :)

Tuesday, 27 July 2010

Chest Infection

On Sunday night Noah vomited and straight afterwards he was breathing really fast and heavily. I'm pretty sure he aspirated. We saw our GP yesterday who prescribed oral antibiotics, but they aren't doing much at the moment, so it looks like we are heading to hospital. Fingers and toes crossed that we won't have to stay in too long, but I'm counting on the usual 5-7 days (althought the Drs always try to tell me it will only be a few).

The last time we were in was last November (except for the sleep study) so we've been very lucky.

Monday, 26 July 2010

Skyping Alison

Last night we had lots of fun Skyping Alison and Joey in New Jersey. Alison is one of Noah's carers who recently met Joey, and since has been back and forth to America to visit him. We have missed her, but are happy that she has met someone as lovely as Joey.

We hadn't spoken to Joey until last night, so I had to ask him the hard questions...I was cracking myself up as you can hear (it's awful when I hear my own voice and laugh!).

Alison, we know you are sad you will be leaving Joey very soon, but we are looking forward to seeing you. We hope you lifted some weights while you were over there, as Noah is even heavier than when you left :)


video

Sunday, 25 July 2010

A Two Van Family

Noah first got his wheelchair when he was around 18 months old. He's had the same base since then but the seat has been changed three times as he has grown bigger. At first it was easy to get him out and about, but as he started to get bigger we found it harder and harder to get him in and out of his wheelchair, and into our little car that we had back then. We knew it was time to look at getting a van so we didn't have to lift him in and out all the time and take his wheelchair apart to fit in the boot of the van.

We were really excited to find a cheap van that would suit us, as the seats could fold up in the back which meant that Noah could stay in his chair and have the whole back part of the van to himself. When a nurse at the hospital found out we were buying a van, she was so lovely and came around and asked us if we would like some money to put towards getting some ramps and tie downs, as they had done some fundraising for a little boy who had a brain tumor, and had extra money left over. They were looking for a 'nice family' to give the extra money to and they had trouble finding one, so we were their next bet! ;)

We are so grateful for them doing that for us as it meant we could just push Noah up the ramps and into the van and leave him in his wheelchair while we were driving. It made out life SO much easier...that was until the last year or so when he grew so much bigger and it was getting harder and harder to push him up the ramps safely.

Noah recently got fitted for a new wheelchair and we have to patiently (or not so patiently) wait for the funding to come through before he can get the chair, but I was starting to worry about what we would do as the new wheelchair is going to be way too big to fit into our small van. I just had a feeling to not stress about it, so I tried not to think about it as I knew we had a good 12 months or so before we would need to worry.

Not long after his fitting for the new chair Nan passed away. We were really sad that Nan was no longer here, but glad that she was with Pop but with the sad news, we also got some amazing news as a family. My Dad and Uncles and Aunty decided that Nan (and Pop) would want us to have their van that they used to get out and about in. I have been putting off blogging about it for a while, as it's still not official with all the legal side yet, but I have been reading my new friend Becky's blog about giving Ben's van to another friend of ours - Junior and Heidi. Heidi has been saying how she is feeling in awe that someone could show so much kindness and I know exactly how she is feeling.

To be given such a huge gift that is going to literally change your life is overwhelming. Saying 'thank you' doesn't seem enough and you know you will never be able to repay someone for such an amazing gift, but it really has changed our lives and made our lives so much easier. Before I would actually dread having to take Noah to school or out anywhere as it was getting so hard to get him into the van and my back was really starting to feel it. Now I'm never worried about having to go out on my own as it's so easy to get him into the van, as it has an automatic lift which means there is no more strain on my back and it is a lot safer for Noah, as there is no risk of him tipping off the ramps.

We actually seem to go out more as a family now, as it's not as much of an effort to go out. The boys love to help with either pushing the buttons to lower or raise the lift, and also to help strap Noah's chair down.

It's also nice that Noah is actually able to sit close to Kobe and in the back with the other boys, rather than being right at the back on his own. I often look in the rear view mirror and see Kobe with his hands on his leg, giving it a rub.

It has been the biggest blessing having our new van or 'Nan's van' as we call it and I always think of Nan and Pop sitting in their wheelchairs in the back and think how happy they must be that Noah is getting to use it now. They both seemed to have a special connection with Noah.

Thank you so much to our extended family for their kindness and generosity in giving us Nan's van. It's overwhelming when something so amazing happens in your life. It has blessed us in so many ways. We now have two vans so we are officially a 'two van family' which means we don't have to buy a new car just yet which was going to be hard with building a new house.

We know how you are feeling Heidi and Junior and are so glad that you get to benefit from using Ben's van too. I know Ben will be smiling over you as you go out and about it in, and hope that it brings some comfort to Becky and Steve to know that it's gone to a very deserving family.

Saturday, 24 July 2010

Hangin' at Uni

During the week Kobe and I headed up to the Uni to catch up with Fiona. It was so nice to see her and hang out for a couple of hours (literally for Kobe!), before she went to class for the day.

Before we went outside to hang out in the sun, Fiona put on some lip gloss, so of course Kobe decided that he should also have some lip gloss on too. I guess he knew that there may be photos taken, and he wanted to look his best! ;) It was cracking me up as Fiona was showing him how to hold his mouth and he did it perfectly.

Kobe kept wanting Fiona to draw smiley faces on his hands with her lip gloss and kept rubbing it off, so she could do it over and over again.

The days seem to be getting a more warmth in the sun already. Later that day I heard on the radio that it hit a whopping 18 degrees (celcius)! It was a heatwave for Tassie in the middle of winter! It was so nice to sit out in the sunshine and have a play, and take some photos together.

Fiona took these cute photos of Kobe having a play. He was playing up to the camera as usual.



Fiona asked me how long it was since I had been a student at uni and I worked out that it was over 14 years ago when I left there -that's incredible! It seemed like so long ago, but then being back there it all just seemed exactly the same, and I felt like I was back there hanging out with all my friends, cramming in classes and rushing to get assignments finished. I actually loved my time at uni - especially because I was studying something I was interested in, I was living in town with my friends, and there was so much more freedom than when we were in college.

In saying all that, I'm so glad that it's over now. I'm glad I got it out of the way before I had my boys so that I can now just concentrate on being a Mum and enjoying them grow up.

Thanks for hanging out with us Fiona in between your busy uni schedule. I'm glad that you are there and get to do what you are interested in after all your years of being a busy Mum to your beautiful girls.



Friday, 23 July 2010

My Sunny Windows

There's not much I love about our house we rent, except for the location, that the bedrooms are big, and the sun that streams through the windows in the afternoon (makes up for how freezing the house is most of the time unless we have the heaters cranking and put up with a huge power bill which is what we usually do).

Kobe and I went up to visit our new house to see how things were going today. We used to go up lots, but now I only try to go up once a week or so.

I'm already in love with my lounge room which will have the sun streaming through by lunchtime, and all afternoon. I'm already imagining my nanna naps laying on the couch in the sun :)

Its the same for our bedroom which is on the same side of the house. Check out Noah's little section in our bedroom where his bed and hoist will go, so it doesn't have to take up space within the main part of the room. I think Noah and I will spend lots of time in our bedroom, laying in the sun!

Kobe didn't want to leave, as he was having way too much fun getting up to mischief with the builder's son.


Only another couple of months and we won't have to leave :)

Thursday, 22 July 2010

King Of Kings

Last week some students at Aaron's school interviewed him for their journalism class. This week their article was published in the school newsletter that goes home to parents. This is the article...

Wednesday, 21 July 2010

My favourite sight!

Are my eyes playing tricks on me!!!???? I just about wet myself with excitement when I saw this today!!! Bring on spring!!!!

Monday, 19 July 2010

Photos in the Fog

Makayla recently got a DSLR and was keen for me to go out taking photos with her. I warned her I didn't have much I could show her, as I'm still learning to use my own camera, but she was still keen to come out to see if we could get some good photos together.

I was able to show her a couple of things - how to play with the white balance which makes a huge difference to the photos, and how to not be scared to get down low...even if it's wet, foggy and cold :)

Kobe is the perfect model and was cracking us up, as he was doing things without us even asking him like jumping as he said 'jump, jump!'.

He's used to being out with me taking photos and all the crazy things I ask him and the boys to do, to get a fun photo.

He knows just what to do when I ask him. I'm sure he's going to be a model when he grows up;)


I hate photos of myself, but I actually love this one Makayla took of me and Kobe. I had a play with it - had to get rid of the zits and wrinkles :)

When we first started it was so foggy which was actually pretty cool for photos. Kobe loved looking out through the fog at the boats.

It didn't take long before the fog lifted, and the sun came out.

We braved the skate park for some photos near the graffiti walls. Makayla brought along some bubbles to blow which Kobe loved.






By the time we left, the sun was shining. A beautiful day for photos!

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