ICU

I can't believe that it's been over ten years, and I've never had to worry about the title of this post until now....ICU.  Noah is currently in the Royal Hobart Hospital's paediatric intensive care unit.  For the past month or more he just hasn't been right, but also hasn't really been 'sick'.  I just knew he wasn't normal Noah, which is why I had been keeping him home from school.

We had seen his doctor a week and a half ago and started treating him for his symptoms which were getting worse - really puffy everywhere (more than normal), and breathing up just now and then - like he had a chest infection but without having the usual rattly cough and no fever.   Instead of having a fever he was extra cold, but had a really flushed face so he looked like he had a fever.

He was prescribed antibiotics as well as a med to get him to get rid of some of the fluid, and the antibiotic helped with his breathing straight away, but he was still very puffy.  He finished the antibiotic three days ago and was seeming to be better (with his breathing at least) but still wasn't 'right' and I knew we had an appointment coming up with his doctor again, so thought we'd try to wait it out till next week to see him.

Yesterday morning though at 5.30 am he woke up coughing, breathing up a lot and needing a lot of suctioning.  Nothing I did helped at all - changing his position in bed, putting the head of his bed up, suctioning and getting him to cough, so we got him up earlier than normal to see if we could settle things down.  I said to aaron I felt like he needed to go to hospital and started to get ready and packed the bags, but we decided to lay him on his side so I could start doing some postural drainage and he then relaxed and could breatth much better and went to sleep for a couple of hours.

Once I rolled him off that side to change his nappy and get him in a different position he coudn't breath very well again and didn't look great.  Mum arrived to watch the AFL grandfinal with us, and we put him up in his wheelchair hoping that he would be able to breath better but it seemed to be worse, so I decided it was time to take him to the hospital.

As soon as we got to A&E they took him straight through as they could see he was in respiratory distress and ordered an urgent x-ray.  Within about half an hour a lovely paediatric doctor we know from the kids ward was with us and they took Noah into 'resusc' where all of a sudden 9 people were in there all working on him to get canulas in, take bloods, keep his airway open as much as possible and took his obs.   The doctor we know took me out to show me Noah's x-ray which was really bad - one lung had extreme pneumonia and was getting no air into it at all.  He had seen how sick Noah was last winter, and said that he was worse this time and that he would need a lot of support to breath which meant he needed to be intubated in theatre and then admitted to the ICU. Before I knew it doctors from ICU were with Noah and also an anethetist who explained to me what was going to happen, and that I needed to understand his condition was life threatening and I needed to be prepared in case he didn't pull through.

The nurse who was in charge of the hospital then came in and I was so glad that we knew her as she also works on the kids ward.  Within all the craziness of everyone working on Noah she explained what was happening and took me up to wait in the ICU waiting room and told me that he would most likely be transferred by plane to either Melbourne or Hobart, depending on if Hobart had space for him or not, as the LGH don't deal with kids in ICU for more than a day or two, and Noah would need a lot more support than a couple of days.

It was a long hour and a half wait and the anethetist and doctor finally came in to tell me that it had gone well and Noah was now intubated and on a ventilator which was now breathing for him.  He also had a central line put in and was stable and in ICU but he would be transferred to Hobart where they deal with kids all the time. They told me I needed to understand it was very serious, and they told me he had a 50/50 chance of pulling through.

Aaron arrived at the hospital just after the doctors spoke to me and we had a little cry together as we sat and talked about what it all meant.  The lovely doctor from kids ward then came in to talk to us and told us that Noah was very, very sick but he was quietly confident that he could pull through as he has been well for 12 months since his last hospital admission.  He said it's hard to know, but he felt like he may be okay and was hoping that he would soon return back to Launceston and could be off the venilator and be admitted back into the kids ward.

We were finally allowed to go and see him in ICU while they were busy getting him ready to transport to the airport to fly him to Hobart.  We were amazed as to how good he looked as the vent was breathing for him and he was so relaxed and peaceful looking as he wasn't struggling to breathe like he was hours before.  We left just before they transported him, to go home and pack some things so Aaron and I could drive down here to Hobart (two hours from our home).  We were lucky that Mum had come in to watch the footy as she was already with the boys and was able to just stay with them.

It was THE longest drive to Hobart but we took our time as we were told that Noah may not even get there before us.   We finally arrived at the hospital about midnight and Noah arrived about 12.30 am.  They were really happy with how he travelled and said he was stable and looked good.  We finally got to go in to see him about 1.30 am. 

The nurses told us not to be too worried about all the tubes and monitors, but it's crazy to see so many machines going at once.

We finally got to sleep on two sofa beds across the hall at about 2.30 am and was woken by the doctor at 3.30 am asking what his dose of phenobarb was as he was having a lot of seizures and they wanted to give it to him IV.  At 6.30 (really 5.30 am as daylight savings started!) the nurse came in and said she wanted to talk to us before she went home and before the new nurses came on.

She said that Noah had deteriorated during the night and was needing a lot more support than when he first came in.   His blood pressure was extremely low in Launceston, but had gotten worse during the night, despite being on high doses of medications to increase it.  She said they also had to increase the morphine to keep him comfortable, and they were concerned that there was very little urine output.

She said we needed to talk to the doctors still, but she wanted us to know that it wasn't looking good that he had deteriorated so much and that we needed to be prepared that he may be so sick that he may not make it.  It was a long morning with lots of tears waiting to talk to the head doctor who was on.

 

The doctor finally came around and said that the next 12 hours or so would tell us more but he said he was very, very sick and needing a lot more support than a lot of other kids who are similar to Noah have needed.  He said he wanted us to be prepared but was hoping that the support that Noah is getting will help him to improve and get well again, but that even if he did he has no doubt he will have another or many more episodes like this one, and that he probably won't pull through many more like this.

He was actually really lovely and very caring and said that although Noah is stable right now, he felt it would be a good idea to get the boys down to see him.  First of all so they could understand how sick he was, and also to see him and spend some time with him.  He said he was happy to start giving Noah his regular medications and start his feeds up slowly and we were grateful that he wanted to treat Noah as if he will pull through, even though he doesn't really know.

After a few phone calls, the boys were down here with us with Mum and Alison who drove our van down for us.  The nurses suggested that we show the boys photos of Noah on my camera first so it wasn't so confronting for them, and to talk to them about what was going on.  As soon as I saw Jay I knew he was worried and upset and he started crying straight away.  He said 'Noah's really sick isn't he Mum?' and I said he was, but we didn't know what was going to happen and that hopefully he will get better, but we have to be ready in case he won't.

We then took the boys in and Jay just kept looking at him, rubbing his hands and face and crying.

Kobe and Harri on the other hand are totally different.  Harri said 'he's not going to die is he Mum!?' and when I said I didn't know to which he was happy with and started talking about something else all together.  Kobe was just so happy to be with us and kept saying 'me miss you Mummy!  me miss you Daddy!'.

Jalen has also been so sensitive and caring to Noah, so he is really taking it hard seeing him so sick.  While the boys were with us the doctor came back to check on Noah and was quite happy with how he was going and said that he had made some improvements throughout the day and that he was still extremely sick, but he was showing some good signs.

We have been overwhelmed and so grateful for all the lovely messages, commments on FB and love and support shown to us already.  It's nice to see how loved Noah is.  I'm so glad that Alison was able to drive down with Mum today and also got to see Noah.

We also got a lovely surprise visit from our awesome home teachers from church who drove all the way from Launceston to visit.  We showed them our 'special room' which is the 'family unit' which is actually in the hospital and we get to use it the whole time we are here - it has a lounge room with a tv, microwave and fridge, a bathroom and a bedroom.   We feel so blessed and grateful that we are being so well looked after by the staff here. We've even been given meals but just haven't felt like eating much all day.

Di also drove all the way down and spent some time sitting with him, while we took the boys over to Ronald McDonald house where we also have been allocated a room for when the boys are with us.


They were so excited to go to RMH and check out where we are staying.  Tonight Mum is staying in the family unit at the hospital and we are at RMH across the road with the boys.  Mum amd the boys will go home tomorrow and Mum will stay with them all week.   We would love to have them with us, but it's just going to be too hard to have them around all the time, and we don't want them to get too stressed or tired by being here.   Depending on how things go we may get them to come back down later in the week and we will stay with them again at RMH.

Tonight before bed the boys all went over to say goodnight to Noah and Jay became very emotional and had a really big cry.  He said he wasn't ready for him to die yet and said that he misses his smiles that he used to give us when he was younger.  I told him that we don't know what is going to happen and we can just hope he gets better, but have to be ready in case he's not and that it's important for us to let Noah know that it's okay if he's too tired.

Jay then asked if he thought that if he said a prayer if Heavenly Father would let Noah know how he was feeling and I said I'm pretty sure that Noah will know how he's feeling and he can tell him whatever he wants to.  Just a few weeks ago Jay asked me when I thought Noah may pass away and I said I wasn't sure and asked him what he thought and he said 'I think it will be soon'.  He can't stop thinking about it, and kept saying to me tonight 'can you remember what I said to you Mum?'.  I told him what a good brother he was to Noah and how much Noah loves him and would be proud of him.

He couldn't take his eyes off the monitors and kept asking us what the numbers meant.

Hopefully tomorrow Noah will continue to make improvements and we can relax a little more. They are giving him all the support he needs - antibiotics, the vent, and medications for all the other problems which they think the severe pneumonia is causing.  The doctors are saying even if he does pull through that it's going to be a while before they can get him off the vent and before they can take him off all the support he is getting. He is heavily sedated at the moment, but still having a lot of seizures - about every 5-10 minutes.  We appreciate everyone's love and support and want you to know it is helping and giving us lots of strength that we need right now.