DNR : Do Not Resuscitate

I think the title of this post is fair warning, it may not be an easy post to read... or write. As with most of what I write, unless it is a straight recount of an event, I have no idea where it is heading but I feel a need to get it out.

As we were walking from the ward to ICU in the early hours of Tuesday morning, I had the doctor say "We should have asked this earlier I suppose... do you have any specific instructions or wishes in regards to Nico's care?" I didn't really think about what he meant but I suppose I was thinking along the lines of are we opposed to blood transfusions and other possible beliefs based choices so I gave a nonchalant "Nah, we are fine, whatever" and didn't really think about it again.

It took about 2 days to hit me, everything that happened. At the time all the stuff was happening, the desaturatons, the increased oxygen, the Code Blue being called, I didn't think it was all that major and was totally calm. (Ridiculous I know!)  I don't know whether this is just residual desensitivity from the NICU days where things like this were just part of weekly life. Maybe it is just a protective function that my brain puts in place to cope with stresses.

After 3 nights on the ward and 2 nights in a recliner in ICU, I went home for a sleep in my own bed and it hit. HARD.

• Sp02 at 66% when I took hom to hospital on Sunday. How did I not know/ notice?? He should have been blue. Why wsn't he blue?
• He had pneumonia. Pneumonia!!!! Not a chill, not a cold, not a cough. PNEU-FRIKIN-MONIA.
• The Code Blue... it was a resuss of sorts, how did I just stand by so calmly and not really feel worried about whether we were losing Nico.
• He was in ICU. Intensive Care. That is NOT a normal part of a hospital admission.
• And then the worst, now unshakeable : How did I not realise that simple question "Do you have any specific instructions or wishes in regards to Nico's care?" was extremely loaded and had nothing to do with our religios beliefs but was asking if we wanted a Do Not Resuscitate on Nico's file or not.

Who gets asked that kind of question.. in real life? Isn't that only for movies?  How does a parent, how does ANYONE decide that? At the time of Nico's impending birth we were asked about this, in a way. What would we like doctors to do if Nico was born before 25/26 weeks? It was a simple decision then. If he came out fighting, fight with him. The alternative did not mentioning and thankfully did not happen. He fought. He was resussed 3 times in the NICU months but there was never a further discussion (thank you, God)

Each Geoff and I gave the doctors and answer, seperately. Thankfully our answer was the same as each others. If there is a chance that Nico will pull through with no further long term conditions, do what needs to be done. I don't know if I even really understand what a DNR means, not in its entirety. Nico needed a whole lot of oxygen when he had the Code Blue called. More than the ward could provide. If he had a DNR... would they not have taken to ICU and given more oxygen? Or would they not have intubated should it be needed... or ... or ... or...

On a much brighter note and a real, non hypothetical one, Nico got out of ICU today, still dependent on oxygen but a heap better. He will be home by weeks end and my aim is to do anything to keep him from ever being admitted again. Does anyone know where you can buy one of these:

(from vi.sualize.us)

Ronald McDonld Family Room and Monash PICU

We haven't had a hospital admission in 14 months. We survived the whole winter of '11 without a single bug getting into Nico's chest. To most families, this is not anything very surprising, and if kids do end up with a cold or flu, they are not necessarily on the Yellow Brick Road to to see the wonderful doctors of Oz. Micro premmies are a different tribe, parents are warned before NICU discharged that the first 2 years will be spent in and out of hospital and the first 2-4 winters especially so.
We were admitted 4 days ago. I am writing from the Ronald McDonald Family Room in the hospital.  Imagine a zero bedroom house inside a hospital and this is what you will get. 2-3 lounge areas, a few computers, a full kitchen with dining table and semi stocked pantry, 2 bathrooms and a laundry. I wish this has been here when Nico was born. It is the furthest cry from the "Hey, lets rip out the toilets, chuck an op-shop couch in their place and call that the parent room" parent room that existed opposite the NICU bays. No one ever used that room unless they really needed a private cry. It was horrid.



Nico came into hospital on Sunday in some serious respiratory distress. he had been unwell since thursday and sent home from ED after a few hours on Friday only to get worse. There was an infection of some description invading him, giving him pneumonia, making him cough till he vomitted, stopping him sleeping any more than 10 minutes and sending his temperature soaring to 39.5 degrees. The bug laughed at doctors attempts of laoding Nico with panadol and nurofen, and pushed his temperature up even more just to show them it meant business. It burrowed further into his lungs and at 4am on Tuesday morning, the nurses and doctor called "Code Blue, 41 North. Code Blue" through the hospital PA system and the crash team (I think they are officially called a resuss team) arrived in 3 minutes. An hour later he was moved downstairs to PICU and on a gazillion litres of high flow oxygen. If he got worse he would be on the tubed ventilator.

PICU doctors told me that they weren't really going to be doing much, if anything, more than they would downstairs, but the oxygen requirements were not something that the childrens ward could cope with. He would just have to ride out the viral infection and if there was any bacterial infection, the antibiotics could work on those. He was in a terrible state. Having dystonic CP makes it hard for them to distinguish what is normal-but-exacerbated movement from what is abmormal. They again, as they have with several other admissions, questioned me about whether he has seizures. The neuro team dont believe so and I don't either as he appears pretty lucid rather than absent (although the though has crossed my mind several times)

His fabulous speech pathologist (not part of the hospital) was there when I came back from a few hours break yesterday. She is his favourite therapist and on a normal day, she only has to speak from a corner of the room unseen and he will light up. She was so upset when I called her to let her know what was going on, she got in the car and spent a few hours with him, singing and talking with him. We are so blessed to have such wonderful people in our life. She couldn't get a hint of a smile from him (he hasn't smiled in days) but he was calm and fell asleep in his tumbleform chair and didnt really wake up much for the next 16 hours. He needed it!! His fever finally broke and he was able to catch up on the week of no sleep (he hadnt slept for 3 days at home even before the admission).

I am hoping we will be out of the hospital by mid next week. When we first went in I was expecting to be out by tomorrow. Goal posts move frequently in the medical world. it is not something I am naturally good with but I am learning to roll with it.

 

Hi 5 at Drum theatre- Thanks Starlight!

We have had a fantastic week thanks to various disability/ illness agencies.

The first was a call from the Starlight Foundation asking if Nico would like to go to the Hi 5 concert at the Drum Theatre. Thankfully it fell on a doctor/therapist-free day and I was able to re-schedule a play date to make it (thanks Goochi Ma for understanding). There was a bit of confusion with the tickets as they were both wheelchair tickets which means that the seats are removed so I woujld have been left standing. Luckily I called to see about Brooklyn coming along and this was fixed up by a lovely staff member of Drum along with another comp ticket for the princess.

I was a little worried how Nico would cope with the volume but when it came on, he went crazy with excitement. We were in the 3rd row of a theatre where seats literally meet the stage so had a great view. He danced to the music and giggled at Jup Jup and Chats puppets popping up around the stage. He wasn't bothers by the booming speakers at all.

It is hard to know what you can see from a stage with those lights blinding you from the audience but I got the feeling that a few times the cast memebers really were interacting with him and it made me quiet emotional to see him loving it. As the show finished, we were waiting for the theatre to empty out before manouvering the chair out when a gentleman approached us and asked if Nico liked Hi 5. I told him he loved them and had a fabulous time. "Would you like to come backstage and meet them? I will see what I can do"

Here is what he could do:

 The entire cast was amazing. They chatted to Nico and asked about him, you could just tell that they had a genuine love of kids and enjoyed what they did. Brooklyn got the most enjoyment out of that bit, but I don't know if she quite knows how special that meeting was, I think she thought anyone who wanted to could just go and meet them. Thanks Tim, Dayen, Stevie, Lauren and Casey for making a good day into an unforgettable one.

When reality slaps you in the face.

So along the veins of my Reaity Bites post I decided to do a bit of a feelings purge. I have been feeling torn between writing this or not. It may help me process things better, but it is going to sound like a pity party for one and I hate that idea. It also feels like a betrayal to my gorgeous man... I try and stop any negative feelings about the impact he has and will continue to have on our lives for... well, forever most likely.... before they even get to the surface, so the idea of writing them is scary.

Today was a day they they did and I moped and felt sorry for myself all day. I hate days like that. I feel like a horrible person. 

Today was a day that the disability, it's severity and it's permanence ate me from the inside out. I don't know why it hit today, it was not a terrible day for Nico, and overall, I have been feeling like things are starting to happen in terms of respite and Nico's education. Yet it was so strong I felt like I was suffocating.

As I sat, feeding him his 4th "meal" of the day at 2pm, I couldn't figure out why this felt so much harder than having a regular child who ate at similar intervals.

8am Breakfast: Weetbix
10am Bottle
11.45 Lunch:  Fruit puree
(sleep)
2pm Bottle
3.30 hard/biting food like a baby cracker
5pm Dinner: Mashed veges
7pm Bottle

Swap "bottle" for "snack and drink" and I could be talking about any child, ages 6 months onwards right? What's the big issue? You are a mum, feeding your child is your main responsibility for goodness sake. Suck it up, Princess, it's what you signed up for. Only it isn't. Every mouthful of food that has gone into his mouth for the last 2.5 years, I (apologies Husband: we) put there. There is no "Here is your breakfast sweety, have fun with that and try to get any on the floor" or handing him a cracker/ bread/ piece of fruit and hoping that the majority of it doesn't end up in his ear or hair, like Brooklyn's seemed to. The simple act of giving him a cracker is a 15 minute sit down exercise for us. The idea that it might (probably?? I don't know) be the case forever, it's daunting.

Then it leads on to the other scary thoughts.
PEG feeding. Forever?
Nappies. Forever? (I don't know, I haven't even mentioned this to his docs)
Sleepless nights. Forever?
Carseats. Forever?

Every single new baby, every pair of siblings playing together, every premmie hitting a milestone no matter how delayed, makes me feel like an evil person because it makes me that much more aware and jealous of what I don't/ won't have in my life. It is not the way my mind is used to working. I am not naturally a "poor me" person, I don't get jealous and I am usually pretty good at focussing on what I do have and not what I don't and I hate myself when I have that reaction.

I feel like I am in a parallel world. Quite often I feel like I will end up back in the "real" one and everything will be normal. Nico will grow up and grow out of all this, move out of home and have his own life, connected to but indepedent from us, as every parent wishes for their child.

When the truth of it all hits, like it did today... it feels like someone has thrown me from a plane without a parachute: I can flail my arms arms around and believe that I can teach myself to fly, I can claw at the air trying to climb back to the plane but ultimately I am just going to hit the earth with one giant thud.

Hope.

Again, there has been a big lapse in time between posts. Things have not been the best. There have been the usual ups and downs of Nico's sleep/ daytime unsettledness continue and the passing of my mother in law, much loved Nana Shona relatively unexpectedly.

I made the trip to Auckland alone with the children, my husband having left for Christchurch the day prior. Just getting tickets organised at such short notice, just before Christmas was a very time-taxing (and expensive) exercise in itself, let alone figuring out the logistics of negotiiating an international airport with a 3 year old, 2 year old in a wheelchair, booster seat for on the plane and luggage. I dropped the kids of in Auckland with my parents and flew to be by my husbands side 10 hours later.

Throwing my family into the maze of looking after a PEG fed, immobile and non-verbal 2 year old was not something that could be avoided but thankfully they came out the other side fairly unscathed with a small insight into our lives they hadn't really seen on visits.

Apart from that there had been no major events until last week when we had our visit to Royal Childrens Hospital to meet with a paediatrician in the developmental medicine department. We stumbled upon this unit when I called Cerebral Palsy Support Network to find out if there were any paeds who specialised in CP or at leaast had a bit of interest in it. His previous doctor had done next to nothing in a year; all I got for my $100 appointments was "How are things? What is happening? Ok, come back in 2-3 months and we will see how it's going"  >> Fast forward 2-3 months >> "How are things? Oh still the same? Ok, come back in 2-3 months and we will see how it's going"  etc etc. Some how it took me about 16 months to pull the plug on him. I was over Nico and myself being put in the too hard basket, and/or being labelled "the neuro baby and his neurotic mother" and needed action.

Foyer of RCH (from rondo.com)

So FINALLY Feb 3 rolled around and I packed our little miracle into the car at 9am for the hour trek to RCH. It only just opened at the new site in December and it was A-MAZING. It is ultra modern and welcoming. There is little hospital-like in there, it has more of a theme-park meets modern office meets spaceship. Of course the aesthetics of a hospital is superfluous  like that orange swirl of liquid top chefs decorate your plate with before placing food. It gives a good first impression but if the chef couldn't cook, it wouldn't be much use. The paed we met with, who used to be head of the Developmental Medicine team, was beyond a Master-Chef.

I repeated all of Nico's vast history (which fills 5 x oversized medical folders at Monash Medical Centre) and my own feelings of frustration and being left to fend for ourselves. She spoke to him, observed him, felt his excruciatingly tight muscles and told me what I already knew: He is a bright boy trapped inside himself. It is not going to be a case of finding one piece of a puzzle to have it all fixed. It was going to a long process and a combination of things causing his unsettledness. But she cared. And she got balls rolling. She made a list of things she wanted done. Medication change to relieve his aching muscles. A multitude of blod tests including but not limited to: full blood count, vitamin and mineral levels, tests for kidney and liver function and an abdominal ultrasound. She believes that these will all come back normal (except maybe iron and vitamin d deficiencies)

When we got down to how we coped, I had a meltdown... nothing new... happens every time i come within 10 metres of a medical professional (and parking security attendants at hospitals i found out later in the day, but that is a different bolg post. One I will write entitled "Most embarrasing/inappropriate/uncomfortable moments I have had a meltdown") I explained in a high pitched, staccato manner befitting of a 3 year old who has lost their prized possession, that we had no practical support, no family within a 4 hour plane trip and how we stumbled through daily life feeling like we weren't really living.

She got on the phone and made a call to Very Special Kids. It is defined as a childrens hospice on its website but its a place where parents can leave their children with medical professionals on a semi regular planned basis to take a break from the 24 hour demands of a child with high medical needs. It is what we have been screaming for for over a year. A break that lasts more than 4 hours, a break where we can pretend to have something resembling a normal life that does not include tubes and meds and trying to ease muscular contractions of epic proportions that make your heart break into a million pieces. A break from being woken at random 1-4 hourly intervals. They will put Nico's case to their meeting next Friday and we will know what kind of support they are willing to offer. I am hoping for a weekend a month, I will be ecstatic with a weekend every 2 months and I will be grateful for anything at all.

I left RCH on a high, feeling a change in the air that could not come too soon. Relief that it had not been a waste of time, relief that we have someone on our side and hope that Nico may be able to start being happy for more than the occasional day here and there.

And to close: A few of my pics as to assure you that as miserable of a picture I have painted about our life pre-RCH, we do have good days, and we do have moments of normality:

Enjoying summer

He sleeps!!