Monday, 30 November 2009

The Best Present

After a long week in hospital the Drs finally decided that Noah may need oxygen long term. I had been questioning them all week and asking if his scoliosis and long term lung damage may mean that he needed to use it more. On Friday morning his paediatrician came into see us and put the monitor on him. His sats were still at around 86% on room air, so he said that he would send up a respiratory Dr to talk to me about how oxygen long term would work.

All week Noah hadn't been bathed so I asked his nurse if we could bath him that morning. We gave him a bath and then thought it may be nice for him to get our of bed and sit up in his wheelchair for a while. The nurse said that she would get a portable oxygen tank so I could even take him out for a walk (we LOVE that nurse! She was the one who organised for us to get around $2000 of funding to get our ramps for our van).

We sat Noah up in his wheelchair and he looked quite comfortable and relaxed and went straight back to sleep. Mum came in to give me a break, so I left for a few hours to go to Pip's house for lunch to catch up with her and Bec. When I got back Mum said the respiratory Dr had come in and decided he didn't think oxygen would help. When I got up to the ward I asked his nurse what was going on and she said that the Dr came and took his sats on room air and they were up to 95%! She said they took blood gases and he had been on room air for a couple of hours and they were about to take his sats again to see what was going on. Low and behold they were above 93% again!! It seems that Noah's sats are a lot better when he is sitting up in his wheelchair. We had his hospital bed sat up a lot during the week, but it didn't seem to make much of a difference.

The blood results came back as being 'ok' (not great, but not terrible) so we are now being referred to a respiratory Dr to see what they think needs to happen. In the meantime the Drs decided that because Noah's oxygen levels were between 93 and 99% on room air, he could go home with no oxygen - the best present ever!

We brought him home on Saturday morning and it was so nice to all be home together again. Everything was back to normal - Noah was yelling, Kobe was grizzling and the boys were arguing! :) Thanks Mum for all your help during the week. It would've been a lot more stressful without you helping with the boys.

We missed the Christmas parade as it was pouring with rain, and instead decided to get into the festive mood by putting our tree up. Kobe was fascinated with it all.

Kobe kept grabbing all the decorations and was so excited about them all. He found a little gold book decoration and sat there trying to read it!

It is so nice to all be home together again. The first night home we all slept like a log - including Noah! I don't usually get a full nights sleep every night but anything is a lot better than sleeping on a small uncomfortable sofa bed, with nurses coming in every hour or so. Hopefully now we can enjoy December with everyone being home and well.

Saturday, 28 November 2009

Youth Christmas Fest

After a long week in hospital with Noah it was nice to be able to get out for the night and spend some time with the youth from church. Last night we had our 'Christmas Fest' for the 12-17 year olds.

With Noah in hospital it looked like either Aaron or I would have to miss out on going, as one of us would be in hospital with him, but Alison kindly offered to sit with him for four hours so we could both go out. Thanks so much Alison! It was nice to know he was with someone who knew him, cared for him and knew how to deal with things happening.

Aaron was glad he got to go as he really enjoying being M.C. He lashed out at chickenfeed on a $7 santa suit and wore the pants and a Christmas t-shirt and hat. At least someone doesn't mind looking like an idiot! ;)

As the youth were arriving there were some lovely carolers singing to welcome them. The youth were all asked to donate a can of food which is then going to be donated to Deloraine House for families who are struggling, especially at Christmas time.

The first activity was apple bobbing. Not everyone had a turn, but those who did got VERY wet!

We then went inside to warm up and dry off with some inside games. Sarah, Toni and I had set up the hall the day before. We thought it looked pretty cool with baubles dangling down from fishing line and a Christmas tree lit up in the corner.

I had lots of fun trying to work out some games that had a Christmas theme. Thank goodness for the internet! Some games we play at dances all the time and we just adapted them to be 'Christmasy' and other games we found and adapted to suit. The first game was like the chocolate game where you have to roll a 6 to get a chance of cutting off some chocolate and eating it. Instead of chocolate though they had presents to unwrap using oven mitts. They also had to put on a Santa hat before they could unwrap a layer. If someone rolled a 6 on the dice they then got to take the present from you and could have a go at unwrapping. The person who got to unwrap the last layer won the present (a chocolate bar). Because there were so many people there we had 6 dice and 6 presents going at once.

It was funny watching people as they were just getting into the unwrapping as someone would come and steal it off them.

Other games we played were 'Knights, Horses and Lovers', Christmas version where they had to be either a Christmas tree, Santa or reindeers when the music stopped . Aaron would then call out on of the three things and if they were doing that, then they were out.

We also played '4 corners' where they had to dance and when the music stopped they chose a corner to stand in. Each corner had a Christmas picture. If that picture was chosen they were out. Jared tried to bribe Aaron not to choose his corner by giving him $5! Aaron told him he wasn't that cheap and he had better offer him more if he didn't want to be chosen.

We also played a Christmas carol game where they wrote down their favourite Christmas carol and 5 numbers between 1 and 20. It could be any song except for Jingle Bells. Aaron then called out numbers randomly and if one of their numbers was called they had to stand up and sing their favourite Christmas carol. It was very funny as there would be about 10 people standing at once singing different Christmas carols. The first person to have all 5 numbers called had to run to the middle of the circle and sing Jingle Bells to win.

It was then time for the 'Hoedown Throwdown' Showdown. At a previous dance the youth learnt how to do the Hoedown Throwdown. We thought it would be fun to have a showdown and have a Hoedown champion.

I got up to have a go and realised how bad I really am at it as I hadn't practiced it since the last dance and was very unco!

Ty (with a little help from me) put together a funny '12 Days of Christmas' youth version for us leaders to do as a skit. Ty had put together a powerpoint presentation to go with it, so each line we sang had a photo to go with it. Instead of repeating the same thing for each verse we changed it up so we could include as many things as possible. The only thing we kept the same was for 'on the 5th day of Christmas my true love gave to me' which was 'GET OFF FACEBOOK'. Nothing to do with 5 things, but funny anyway as everyone is always on facebook.

It was a bit of fun and we didn't mind making fools of ourselves for the sake of a few laughs.

For supper we made cute little snowball puddings and reindeer cupcakes. We were so excited about them (yes it's a girl thing!) and they looked so cute on the tables.

We also had red or green spiders to go with the Christmas theme.

The youth seemed to have lots of fun and it was nice to get out together for the night and have some fun with them.

Wednesday, 25 November 2009

Day 3

As usual with hospital trips with Noah, it looks like we are in for the long haul once again. Every day we start to wean him off the oxygen, and everytime we do his sats drop down to the high 80s again. The Drs said today that because they think it's viral the antibiotics aren't really getting rid of the pneumonia fast and it's just something he has to get through. In the meantime we are turning the oxygen up and down and up again, waiting for the time when Noah doesn't need it so we can get out of here.

I think everyone is starting to feel it a bit as the boys are looking really tired and are grizzly and not really themselves. It's hard sharing time between home and hospital with them and trying to have a normal routine as much as possible, at the same time.

Today Mum came and sat with Noah for 4 hours so I could go home with Harri and Kobe while Kobe had his afternoon nap. It was nice to get home and get some things done and know that Noah was well looked after. I felt bad for Mum though as I know how boring it can be sitting around all day and also tiring. I know she was glad to get a visit from Simone.

The boys were happy to come up after school for a visit and a play.

Kobe is just like Harri was years ago - loving exploring the ward and charming all the nurses.

Harri rang me tonight sobbing his heart out at bedtime saying he wanted to ring me because 'I love you Mum'. At first the boys find it fun when Noah is in hospital but after a few days you really notice that everyone is tired and not liking that the family is apart. Hopefully tomorrow Noah will be a lot better as we wean him off the oxygen so that we can get home really soon.

Tuesday, 24 November 2009

Still in Hospital

I knew it would happen – one day in hospital always ends up being a lot more - on average about 5-7 days. One of the worst things about being in hospital is the lack of sleep. The sofa bed that I sleep on is only just wide enough that if I lay on my back I’m sure my muffin top is hanging over the edge! If the bed wasn’t bad enough, then being woken up every half an hour by a beeping IV or nurse coming in to take Noah’s obs kept me pretty much awake on and off all night. I'm feeling tired but not overly tired - I think I'm kind of going on adrenalin at the moment.
Last night I decided to try to get some sleep at about 11pm. At 11.30 pm the nurse comes in to take Noah’s obs and tell me he is due for his ventolin puffer which I get up to give.
12.30 am – nurse comes in to adjust his IV machine
1.30 am – I.V starts beeping and the nurse comes in to adjust it
2.30 am – nurse comes in to do Noah’s obs
3.00 am – I get up to suction Noah
3.30 am – nurse comes in to give Noah’s IV antibiotics and tells me he is due for his ventolin puffer again.
4.00 am – antibiotics have gone through and nurse sets up IV to flush it through
4.30 am – nurse comes in to do Noah’s obs and adjust IV machine
5.30 am – nurse comes in to do Noah’s obs
6.45 am – I think it’s 5.45 am and thought I could sleep for another hour and then realise it’s time to get up and get ready so I can meet Aaron downstairs with the boys so I could take them to school.
It’s feels like one of those nights just after you take a newborn home, and you are up and down all night and don’t really know what went on and it's all a bit of a blur.
After dropping Aaron at work and Jalen at school I went back up to the hospital with Harri and Kobe for a little while, before Mum came up to help out. All morning Harri was begging me to take them to the playroom, but I told him we had to wait to see Noah’s Dr so we could see if Noah could go home yet. They were very patient waiting in the room with Noah for an hour and a half – Kobe was kept occupied with the Wiggles on our portable DVD player and Harri played his Nintendo. Finally Dr B. came in and Harri yells ‘Dr. B is here!! We can go to the playroom now!!’.
After chatting with Noah’s Dr we knew he wasn’t keen for us to go home as Noah still needed a little bit of oxygen to keep his sats up. He said he could have his canula taken out and could switch from IV antibiotics to oral antibiotics which is one stop closer to getting home. I did ask if we may be able to go home with oxygen and Dr B gave me a little smile and just said ‘I think we have come to the conclusion that if Noah needs oxygen he needs to be in hospital’.
During the afternoon a physio therapist came up and did some postural drainage on him to try to loosen things up a bit more. He is coughing up lots and it finally seems to be getting looser. The most frustrating thing is that we are stuck in here, Noah actually seems almost back to his 'normal' self - he actually looks really good and seems to be breathing okay (he always has an irregular breathing pattern anyway).
The boys were excited to see Mum when she arrived this morning, and we did a swap for a couple of hours – I took Harri and Kobe home while she sat with Noah for a while. We then swapped over at lunch time so Kobe could go home for a sleep. It's nice having her here to help out and know that Aaron can go back to work without having to worry about the boys.
Tonight was Alison's usual In Home Support time so we were glad to have her come up to the hospital for a few hours (even bearing gifts of food and DVDs to watch!) so we could go home and spend some time with the boys after school. We even got to go out for tea!

Aaron was keen to get up to hospital tonight to see Noah as he hadn't seen him all day. He always finds it really hard to go to work when he knows he is in hospital as he stresses more about him when he is away from him. He was very happy to see him wide awake, alert and looking really well.

It's nice having Mum at home with the boys as we got to spend some quiet time up here alone with Noah tonight. Fingers crossed that tonight might be our last night and we can get off the oxygen and home tomorrow.

Monday, 23 November 2009

Celebrating 14 Years in Hospital

Last Friday Noah woke up with a bit of a cough, but seemed okay to go to school. By the end of school he was coughing lots, had a bit of a temp and was vomiting a lot and breathing really fast. He settled down a bit once we got him home and out of his wheelchair and onto his side, but as the weekend went on, his rapid breathing just wouldn't settle down for very long.

On Saturday night I was up and down all night checking his temp, giving panadol and suctioning him and I knew he just wasn't right and probably needed to see a Dr. I was hoping to hang out until Monday so we could take him to our usual GP as he knows him well and knows what is normal and what isn't and when we should be worried.

By Sunday lunch time I knew I couldn't wait any longer and had to take him to the after hours medical clinic. The Dr there listened to his chest and said it sounded like he had pneumonia. He checked his pulse rate and sats which were down to 90% which made him quite worried. I told him that even when he is well it's only usually 97% but he wanted to ring the paediatric Dr at the hospital to see what he should do. After a big discussion he said he really thought Noah should go into hospital to get on IV antibiotics and oxygen, even though I asked if it would be possible to try oral antibiotics first. Deep down I knew that Noah really needed to be in hospital as was really labouring to breath but I just knew that once we were in we would most likely be in for 5 days or more as they hook him up the IV and then want to continue IV antibiotics for the whole course.

The GP and the paediatrician talked for a while and the GP told him I was keen to get out of hospital ASAP and that I care for Noah very well at home. He also arranged for us to be fast tracked though A&E so we didn't have to wait for hours till we had an X-ray, bloods and urine done and could be sent to the ward quickly. He sent me off with a letter which made me laugh as he said in it that "mother does not want a long stay in hospital, 3 well boys and a husband at home". The GP kept asking me about home and if I had a partner at home, and when I told him I had four boys and he realised what Noah's condition was he kept saying 'you are amazing!'. He kept telling the paediatrician that we care for Noah well and supposedly the paediatrician told him that our 'tanks can run low' when caring for a child like Noah, so they will do all they can to make it a quick hospital trip. It has been a very long time since we have been in hospital so we have been really lucky, so I really can't complain.

After an hour or so in A&E they came to the conclusion that he probably has a virus which caused the chest infection and a bad ear infection. The funniest thing was being asked over and over again 'are you Noah's Mum?'. I don't know how many times I get asked that. I'm not sure if that is a good thing or a bad thing. When I tell them I am, I usually then get 'do you care for him at home?' and then 'you do a great job'. It's nice hearing it from Drs and nurses as they really appreciate the amount of medical care that goes into caring for Noah. One of the nurses looked at his file yesterday and told me he had been admitted 54 times! Most of that was in his first 2-3 years.

We finally got up to the ward at about 9.30pm and were glad to see that we were given a single room. The downside of the room is that the TV in it doesn't work and we are across the hall from a screaming teenage girl who obviously has an eating disorder as she screams a lot when the food comes around that she doesn't want to look at it and 'can't do it'. Thank goodness I have boys! I know no one is safe from issues like that, but hopefully we won't have to go through what her poor parents are dealing with at the moment. It does make count my blessings that I never have to worry about things like that with Noah.

Aaron took carers leave today so that he could get the boys to school and we could work out how long Noah is going to be in for. This morning he came up to visit with Kobe. It is Kobe's first experience with hospital and he LOVES the playground that they opened the day after he was born. He spent ages in there today running around and going down the slide again, and again, and again!

It was nice to have a visit from Simone, Oliver and Lisa this morning after they went to the gym. The best surprise was that Simone brought me in their Virgin Mobile USB plug in to borrow, so I can hook up to the net on Aaron's laptop!!! Thanks sooooo much Simone!! Best thing ever - especially since the TV doesn't work! Now I can at least check my email, get distracted on facebook and blog :)

Noah's paediatrican does rounds at the hospital every morning so we were glad to see him this morning. He was having a little chuckle at me saying he was surprised that I agreed to come in! I told him that Noah didn't give us much choice as it was obvious he needed oxygen. I asked him if we could try weaning him from the oxygen to see what happened with his sats so we could get home ASAP and he said that was fine. As soon as we took the oxygen away his sats dropped into the low 80s so it was obvious that he still needed it. As the day has gone on he has improved and is now only on 1/2 a litre (down from 2) and his sats are sitting at 96% which is good. At least he can get a few more doses of IV antibiotics while he needs the oxygen.

I told his Dr that we needed to get home today as it is our 14th wedding anniversary and we didn't want to celebrate it in the hospital cafeteria. He had a bit of a laugh and told Noah off for mucking up our plans. One of our favourite nurses was on this morning (she helped arrange to get us some funding for our ramps in our van years ago) and was laughing that it was our anniversary and we were stuck in hospital. She joked that we were obviously only still together after 14 years as it's too hard to get divorced as it means you have joint custody and therefor have the kids even more than you do when you are together, so staying together was a much better option. She cracks me up. It's nice to have fun nurses around that we know from years ago who can make you laugh despite being stuck in hosptial.

We had arranged for Di to work late tonight so that we could go on a 'hot date' for our anniversary, so she still came up and spent a couple of hours with Noah so we could have a break and go and get some tea. So our 'hot date' for our anniversary ended up being at KFC with three boys - very romantic! ;) Harri wanted to take a photo so I told him to take one of Aaron and I for our anniversary. This is what he came up with as he said 'uh oh - that's NOT good!'.

After school the boys were excited to come up to the hospital - not to see if Noah was okay, but to play in the playground! I guess it's a good thing that they are so used to things like hospital that they don't worry too much about Noah.

Hopefully we will just have to spend tonight in hospital and can get home tomorrow - all going well with no oxygen. I told Noah off as I'm way too busy this week to be sitting around in hospital. Next week would've been a much better time to have gotten sick! ;)

Friday, 20 November 2009

Hanging with Kenneth

Yesterday I met Sarah, Joe and Kenneth (Cope! still can't believe that Kenneth Cope was in Tassie!!!) at the Penny Royal to go for a walk to the Gorge. It was such a beautiful day - supposedly about 29 degrees. I told Kenneth that we always have weather like this in Tassie! :)

It was the perfect day for a walk to the Gorge, although Joe and I were wishing we had our bathers as we would've loved to have jumped in for a swim.

I was loving that Kenneth LOVES to take photos and wanted to stop and take pics of different things along the day - mostly photos of leaves or plants or peacocks. He is a man after my own heart :)

It was so nice to spend some casual time chatting with him and finding out more about his amazing life. I asked if it's hard traveling so much and he said it is and that he misses his family a lot. I can't even imagine how hard it must be for them to have him gone so often. He was telling me that his daughters are all good singers as well. I loved hearing about how he gets inspiration to write different songs. He said that he wrote one of my favourite songs of his 'More' in a hotel room, and had it for years before he recorded it for EFY.

The whole time we were chatting I kept thinking 'this is KENNETH COPE!!!'. I have loved his music for so long and it was just so hard to believe that the amazing voice I hear on my CDs, was the guy that we were spending two great days with him!

He was such a nice guy and never seems to get sick of us asking for photos, although I'm sure deep down he was probably thinking 'not another one!!'. :)

I was joking with him that I was one of his 'groupies' and I think he realised how much I really do love his music when I asked him to sign all of my CD covers - I had about 7 or 8 - some of them are about 13 years old or so.

Later that night I was excited to go back to Deloraine to hear him sing again at the seminary and institute graduation/fireside. Aaron, Danny, Jack and Hannah all graduated this year and we all celebrated with the yummiest cake ever!

Kenneth speaks so well and sang four beautiful songs. I could listen to him sing all day. He is amazing as to how he remembers people and names and genuinely cares for them. Throughout the song he would direct the song to certain people and even mention them by name during the song.

I went up to him when he was having a quiet moment packing up to say goodbye and to thank him for coming and spending time with the youth. He said that he wanted to tell me something that really touched him. He said that at the concert Aaron went up to him and said to him 'thank you for bringing the spirit into our home with your music' and he said that touched him more than anything else, that anyone had said to him while he was here. He said that a lot of guys come up and say 'thanks, that was great' etc. and it's not something he would usually expect a guy to say to him as they aren't good with expressing their feelings, so he realised how genuine he was when he said it, and it really meant a lot to him.

He also said that he hoped that some of the music he played while he was here helped me to feel like I could get some strength as he knew I had a lot going on at home with Noah. I told him there are many times when I listen to his music over and over again and it always makes me feel great. We were so lucky to have him come and visit and is something I never thought would happen in my lifetime!

I was sad saying goodbye to him as I know the chances of seeing him again is pretty slim, unless he moves to Tasmania. I did try to convince him it would be a good idea :)

I'm so glad we got the opportunity to meet him and hear his incredible music in person. This is a little bit of one of my favourite songs that he sings 'More' from the concert on Tuesday night.

Thursday, 19 November 2009

Kenneth Cope

Last night we had an amazing opportunity to meet Kenneth Cope and attend a concert that he put on. He is an LDS contemporary singer from the USA and I have LOVED his music for years - since I was a teenager. He has a lot of CDs out and is also a producer and mentor for other contemporary artists. I remember putting on the 'Greater than us all' firesides at church and absolutely loving the music. I was lucky enough to be able to have seen him in concert when I went to Ricks College (BYU Idaho) and never thought I would get the opportunity to see him again.

In March our youth from church had a convention where they were able to have a live link up with him via the net. They all loved it and so did Kenneth. When two stakes from Sydney decided to sponser him to come over to see them, we were excited to hear that he wanted to pop down to Tassie before he went back home to visit the youth!

Last night we had a BBQ for the youth before the concert. It was so exciting to finally meet him. The youth loved it and he was so friendly and amazingly remembered all of his friends from Facebook! When he would realise one of them was his friend on Facebook that he had 'spoken' to he would give them a big hug.

Lucy, Laurie and Abby were soooo funny. They came with t-shirts that they had put '#1 fan' on the front, and 'Lucy loves Kenneth' etc. with his picture on the back. Those girls crack me up. He thought it was hilarious.

Throughout the night he was chatting to people and was so friendly.

He didn't mind at all being asked over, and over and over again for photos!

After the BBQ we headed to the community complex for the concert. Mum and Dad had the boys with them at the park while we were at the BBQ. Jalen was excited to meet him, and Harri was his usual self and wanted to play with his friends instead! :) We had to bribe him to come for the photo!

The concert was so good. He sang a mix of contemporary and spiritual songs and even had the boys cracking up as he did some funny sounds into the mic including Darth Vadar noises. Harri even went up to him after the concert to ask if he could do the Star War sounds again!

We are looking forward to seeing him again tonight as he does a 'fireside' for us - a meeting at church that has more of a spiritual feel to it.

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