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.