Fighting Hard

It's been a much better day today with Noah fighting hard and showing us he's not quite ready to give up just yet.  We headed over to the hospital this morning after a night of not much sleep at Ronald McDonald house.  All of us were in the same room (Mum slept at the hospital in the family unit we have the use of while we are here) and the boys were SO excited about it.  At 10.15 pm Kobe was still laying in his bed singing 'incy wincy spider' and 'Peppa Pig'.  Every couple of minutes he would sit up and say 'I wuv you Mum!' and then start singing again.

The boys finally got to sleep around 10.30 pm and my mind was still racing with thoughts about what was going on with Noah.  I finally got to sleep after 1 am and woke up at 5.30 am and couldn't get back to sleep.  Before heading to the hospital we had breakfast at RMH and the boys checked out more of the great books and games that they have there for us to use anytime.

The facilities at RMH are fantastic.  We have access to food there, washing machines and dryers and can cook if we want to. 

Kobe loves it and keeps saying 'me like this place!'.  The boys were especially excited when we discovered the games room with internet access, a Wii, Playstation2 and XBox.

We headed over to the hospital and Grandma (my Mum) also couldn't sleep very well and had been sitting with Noah for a while before we got there.  She decided to take the boys for a walk into town so they didn't have to hang around for too long, while Aaron and I spent some time with Noah and caught up with how he was going, and talked to the doctors.  They said he was very stable over night and was continuing to respond well to the treatments and were happy with how things were going.

We got a lovely surprise visit from Chelsea and Rosie.  The funniest thing was that a nurse came in to tell me that I had a visitor 'Chelsea Parsons' and one of Noah's nurses got very excited and said 'Chelsea Parsons the photographer!!!?!!'.  I laughed and said 'yes Chelsea is my friend' and she was so excited and said that Chelsea was her wedding photographer earlier in the year.

Mum, Alison and the boys headed off back home after lunch and both Jay and Harri were a bit emotional saying goodbye.  Jay is feeling a bit stronger and more positive today but told me that every time he starts thinking about it again, he gets worried and sad again.

Aaron and I were saying that we think Harri really does understand that Noah is very sick, but acts like he doesn't care because he's not really sure how to deal with it. Today he was a little sad and seemed to want to spend more time with Noah.

The doctors and nurses have been absolutely incredible.  We feel so blessed that although we are far from home, that Noah is being looked after so well and that we are also being cared for so well.    The nurses are making sure we are okay all the time and are giving us meal vouchers to eat in the hospital cafeteria and get breakfast brought to our room in the morning.  Aaron and I were joking with the nurses tonight about how we don't get out much without the boys so it's a little bit exciting to have so much time together, and how a date down at the hospital caf is about as exciting as it gets!  
 

Every time there is a shift change we find that the nurses are pretty quiet around us, but they soon get to know what we are like and love having a joke with us.  Aaron loves stirring them up and we were joking about our night alone in the NICU family unit to which they were saying funny things like 'take it easy in there!'.   We were given a key to the unit which has the hugest key tag of all time on it, so Aaron is forever joking about losing the key with the nurses.

We feel so blessed to be able to have such a lovely space to ourselves which is just up the hall from Noah.

I have a feeling that the ICU and Royal Hobart Hospital is going to feel like home before long, just like the kids ward in Launceston does.

We had other visitors drop by today including two friends Caroline and Mick who both work in the hospital and also Sarah's Mum who dropped in to say that Sarah was wishing she could drop in herself but can't now she lives in Melbourne.  She dropped off a gorgeous little teddy named 'Chazz' for Noah from Sarah and Joe and the boys, and he is now keeping Noah company in his bed.   I just love his chubby little chest - think it's about time to buy him a bra! ;)

The doctors come in numerous times a day and are still talking to us about talking together about what our plans are in case Noah goes downhill.  We know we need to be prepared just in case, but they also said this afternoon that Noah is responding really well to all the treatments and they are really happy with how he's going.  The head doctor has been absolutely fantastic and explains everything that is going on and makes sure we are happy with what is happening and clear about where things are heading.  He keeps checking that we are happy to continue with how things are going and keeps asking if we think Noah is comfortable, and tells us to make sure we say if we are worried about anything.

As the day has gone on Noah has had a bronchial wash (lavage) where they wash the mucous out of Noah's lung and send it off to pathology to see what bacteria is growing.  They said it went well and will hopefully give them more answers so they can treat him with the right antibiotics.  This morning he was on four antibiotics but they have no switched it to two (tazocin and azithromycin), and may change it once they know what bacteria it is.   They have also lowered his sedation and he is needing a lot less oxygen, and have started up his feeds and increased the rate of feeds as the day has gone on.   His fever has gone and his seizures have settled right back down to 'normal' for Noah.   He also has increased his urine output. 

Tonight the head doctor Peter told us that he was really happy with things and hoped within the next few days they could attempt to take him off the vent as he started to wake up a bit more.  They have also contacted Noah's paediatrician Dr B. and have told him what is going on.  Doctor Peter is really lovely and asked how the other boys are coping and told us he really wanted us to try to get some rest tonight, so we have come back to our room to have an earlier night, and hopefully get some decent sleep.  He told us that he is ver impressed with how well we have cared for Noah for so long and how good he looks and was especially amazed that he had no contractures and that his limbs could move so well, despite being so disabled.  It's nice to hear such nice things from people who understand how much it takes to care for Noah full time.  The nurses and doctors keep asking us if we have Noah at home full time and if we have any help to care for him.  When I tell them we have 8 hours of In Home Support they tell us what an amazing job we are doing and how it's obvious how loved Noah is.  It's nice to hear but I also tell them that we can't imagine it being any other way and don't feel like we have done anything 'amazing' as he is our son and we love him and just decided that all we could do was give him the best life possible, no matter how long it was going to be. 

We are very overwhelmed with the love and support shown by so many people from all over the world.  It's so nice to know that if we need anything that so many people are willing to do anything for us and already have.  We got some lovely emails, texts and phone calls from Noah's school today saying they were thinking of us and to see if there was anything they could do to help.  It's nice to have Aaron down here with me and to also have the support from his school for him to be here as long as he needs to be.  Hopefully tomorrow will be another positive day Noah will keep showing the doctors that he's going to continue to fight hard to be with us a little longer.