January 2012 In Pictures

Round 2: Here We Go Again

Here we go again. We are now "those" people who have the Sydney Children's Hospital Emergency Department on speed dial.

After 4 days of being a bit off coloured, during which Sean would randomly throw up a meal, my gut instincts told me to take him to hospital. So, just after 10pm on 28 January, and after calling to forewarn the nursing staff of our impending arrival, we packed everyone and everything into the car and headed to the SCH ED.

Upon arrival, we were shown straight away to an area completely devoid of other patients. The doctors and nurses assessed Sean, and after a little encouragement from us, the ED doctor on duty called Dr Paul Gray, our immunologist who we considered the "head" of our medical team. During the 10 days we'd been home since our discharge on 17 January, Dr Gray had called every second day to check on Sean. Dr Gray gave us his mobile number and told us to use it as often as we needed to, and since we were sitting in the ED, and even though it was nearly midnight, we felt a call to him was justified.

Home Time!

After 12 days of doctors, nurses, poking, prodding, needles, antibiotics, and countless samples of blood, snot, skin, wee and poo taken from Sean, we were finally allowed to go home.

It felt like today would never come, and even as the morning dawned and Jonathan arrived, it still didn't feel like we were ever going to be allowed to go home.

We only had one task for the day - and that was to take Sean home. We waited for various people to come and do their things - Sean needed another cannula so he could have another IVIg infusion, and Dr Gray still needed to give us a few things before we could go home.

Not a lot happened over the weekend. Dr Gray paid us a visit on both days, which made us feel quite special. Our gorgeous nurse Amy didn't work weekends, but we had some lovely nurses looking after us. We were so very lucky to get Amy for much of our stay, as we felt the continuity of care was very important for Sean. With us in such good hands, Jonathan felt confident about going back to work, which he did yesterday.

Things Are Looking Up

As each day passes, we are seeing Sean's health improve under the watchful eyes of doctors and nurses.

By the time our email to Jonathan's parents was written and sent, Sean was completely free of wires and tubes and lines. The oxygen tube was the first to go, followed closely by the probe to monitor his oxygen saturation levels and his heart rate. Last but not least, the cannula was removed and Sean finally had the use of his left hand again.

I learned a very important lesson yesterday - Wikipedia should not be read at 5am when one is upset. And another - sleep is good.

Learning To Live With SCID

We'd been in hospital for nearly a week, and we were told today that we were unlikely to be home for another week.

There were so many samples to be taken for tests today. Sean had to be "drained" again, by an incompetent doctor who couldn't read, which resulted in Sean being stuck twice in the space of 30 minutes. The poor little man was already so upset with the first needle, and was even more traumatised after the second. Sean was rapidly becoming a pin cushion; we are lucky though that Sean has good veins, both in his arms and in his hands. If Sean had bad / poor veins, the process of drawing blood and administering medications would be that much harder.

Sean was still quite severely underweight, and the doctors talked about inserting a nasogastric (NG) tube into Sean to give him more nutrients. Poor thing - we so didn't want this to happen, me in particular, as I can still vividly recall my own experience with an NG tube. I was 5 years old, having just had emergency surgery to remove my ruptured appendix, and the doctors had to insert an NG tube in to me. The feeling of the cold slithering plastic that snaked up my nose and down my throat has stayed with me all these years. I can also remember, like it was yesterday, the doctors and nurses performing nasogastric aspirations on me during that time, but thankfully, this was something Sean did not require.

Dazed & Confused

After yesterday's news, we spent much of today feeling a bit dazed and confused.

Although we were still very sad, we needed to pick ourselves up and get back on our feet, and continuing moving forward. We had plenty of questions to ask, and there were plenty of professionals to answer them. We are slowly but surely realising what an incredible team of doctors we have.

Throughout the day, we both had moments where it was just too much for us. We both had a cry over the fact that Jonathan knew how to drive from home to the hospital on autopilot, and Gloria knew how to spell "immunoglobulin" without using the auto-correct function. These are things we both could have happily lived the rest of our lives not knowing, but, alas, they are key things in our new life now.

It really was the start of our new life, with Sean receiving his first intravenous immunoglobulin infusion (IVIg) today. The doctors and nurses monitored him ever so closely, to watch for any negative reactions or side effects. Thankfully, it all went smoothly, and Sean seemed happy to sit quietly while the infusion took place.

News & Initial Diagnosis

For the second time in less than a week, our hearts broke, with news of an initial diagnosis on our precious little man.

After being subjected to a myriad of blood tests, and having endured a number of people poking and prodding him, drawing blood and taking various other samples, the doctors were finally able to tell us what they have discovered so far. It appeared Sean has Severe Combined Immunodeficiency (SCID). This disease is a life long illness that will require regular treatment to keep Sean alive. We had never heard of this disease, but over the next week or so, we were to learn all about it.

We learned today that Sean was also suffering from a form of pneumonia - the doctors rattled off some acronyms, and PCP (which we later found out stood for Pneumocystis jiroveci Pneumonia) were the 3 letters that kept coming up. Sean's compromised immune system led to this infection, which would now need to be treated with antibiotics.

Public Ward, Private Pain

After spending the last 2 days squirrelled away in a single room with a seal on the heavy door, today, we were to see how "the others" lived in hospital.

The private room we had meant we were able to process our pain in our private way. We had gotten familiar with the nursing staff and they knew what we needed even before we asked for it. This morning, we were told we would be moving to a general ward, as all the tests came back showing Sean had nothing contagious. As the hospital only had 8 beds for kids with infectious diseases, and we were taking up one of those beds and didn't need it, we had to move.

We approached the nursing staff and asked to be put into a private room, but they said the chances of us getting a private room were slim to none. As we were waiting on so many more test results, the best thing to do for the time being was to be in a general ward. We hoped we would end up in a small configuration, sharing with only 1 or 3 others, but alas, we ended up in a ward with 6 bays.

Tears At The Supermarket

We continued our stay in the infectious diseases ward, under quarantine in case Sean had something contagious. The rounds of tests continued, but we had less doctors visiting today.

At Jonathan's insistence, I went out for a walk, if nothing else than to get some fresh air and get away from the hospital. The sun was warm on my skin when I walked outside, and slowly, I made my way up the hill towards the supermarket, following Jonathan's directions he had given me as I left the room. I was no more than 100m away from SCH when I wanted to turn back and get Jonathan to go and get our lunches. But, knowing he would be disappointed in me, I continued my walk towards Coles.

Coles was located in a small shopping arcade that also housed a few other shops. I had to walk past a Chinese grocer before getting to Coles. I stopped to have a look for some of my usual comfort food, and food that was easy to prepare and eat in the hospital room. I picked up a few large cups of instant noodles, and wandered around the shop for a little while. The tears were hot behind my eyelids, and threatened to spill down my face, but I managed to pull myself together and pay for my items before continuing to Coles.

For a minute or two, stepping inside Coles returned me to normality. It was like someone had flicked a switch, and my brain went from worrying about Sean to trying to work out what we needed at home for lunches and dinners. I looked at all the fresh fruit and vegetables, and started towards the broccoli when, all of a sudden, someone flicked the switch again, and I remembered Sean was in hospital, and was likely to be there for at least another few days. And then I remembered Sean was sick. And I lost it.

The Day Our World Turned Upside Down

On 5 January 2011, our world was turned upside down.

Life as we know it would never be the same.

Over the course of the next 12 days, we were to find out that our perfect little man was even more special then we already thought.

After months of being a bit "off coloured", it took an early childhood nurse 5 minutes to confirm my observations - that Sean was sick; not just plain sick, but very sick. Jonathan and I had notice a change in Sean since around mid October, after we returned from our holiday in New Zealand. Sean's appetite was slowly disappearing, and he was steadily losing weight. By mid December, Sean had changed from our happy, active, engaging and sociable little boy to a clingy, listless, easily irritated and sooky baby, who needed to be held 24/7.

Sean is ONE!

Happy birthday, our darling Sean.
Daddy and Mummy love you so much!