Day -6: A Little Bit Febrile

fe·brile /ˈfebrīl/

Adjective:
1. Having or showing the symptoms of a fever.
2. Having or showing a great deal of nervous excitement or energy.

I think we were all a bit febrile today.

Day -7: And So It Begins

And so it begins.

Sean and I left our home this morning for the last time in a while, and headed to the Sydney Children's Hospital to start the arduous road to what we hope will be a cure for the Severe Combined Immunodeficiency.

We still had so much to do this morning when we woke up - we still had to finish packing, and I had wanted to alter the length of 2 pairs of pants I was hoping to take to the hospital to wear. Jonathan had set up the sewing machine for me last night, but we ended up spending the night watching TV and enjoying each other's company. After feeding Sean his breakfast this morning, I got on to altering the pants. It took us 20 minutes to find all the bits and pieces for the sewing machine that were still in the linen press, but once I got going, it only took 15 minutes to get the job done.

The last of our big list of things were packed and we ended up with a large suitcase, a smaller suitcase, a bag full of Sean's toys and a bag full of food, not to mention some last minute items that were thrown into Jonathan's backpack that he was going to take to and from the hospital. There was also the foam overlay for the uncomfortable sofa bed and my pillow to add to the pile of stuff we were taking with us. The boot of our car was full by the time Jonathan finished loading everything in.

New Chemotherapy = More Information + Date Change

Yes, today IS Monday, and we are still at home.

There has been a slight change of plans. We are going into hospital TOMORROW.

It all came about last Friday, when I received a phone call in the morning from Laura, asking if we could go back to the hospital for another chat with Dr Trahair about Sean's chemotherapy. We teed up an appointment at 4pm, so as to allow Jonathan to work until 3.30pm and leave the office for the afternoon to join us for the meeting. Last Friday was also Jonathan's last day of work for the next 4 weeks - he had arranged for time off with his managers so he could be at the hospital with us during the most difficult time.

The "Big Talk", AKA The Talk We Had To Have

I feel numb.

And scared.

But mainly numb.

It's been 30 hours since the doctors gave us the "big talk", and we are still trying to process the flood of information that was poured into our laps yesterday afternoon.

Late last Friday afternoon, after Sean was discharged from hospital (after the doctors inserted the central line), Dr Gray called us to change the "big talk" from this afternoon to yesterday afternoon. We were also informed in this conversation that the lead physician was not going to be Dr Tracey O'Brien, but Sean's case will now be managed by Dr Toby Trahair.

Tubes & Lines & A Whole Lot of Tears

We had a déjà vu moment today, when we were handed a bundle of screaming nude baby wrapped in soft bunny rugs. Only today, the screaming baby brought tears of sadness and heartbreak, and not tears of joy and exhilaration.

You see, the last time someone handed me a bundle of screaming nude baby wrapped in soft bunny rugs was the day Sean was born. Sean was born via an emergency C section, so Jonathan was able to see Sean and take all the photos before the doctors bundled Sean up and brought him to me for cuddles. No words could describe how happy and excited and over the moon I felt when I held my perfect little man in my arms that day.

Today, I felt sad and scared and heartbroken.

Transplant News & Nasty Surprises

Today is the last day our beautiful boy will be free of tubes and lines for quite some time.

Tomorrow, we will hand over our gorgeous little man to the doctors, who will insert a central line and a nasogastric tube in the lead up to the transplant. Sean will sport these fetching accessories for the next few months; potentially until Christmas time.

Up until last Friday (2 March), we weren't aware that the central line and the NG tube would stay in Sean post-transplant. Up until the Sunday before last (26 February), we didn't have any real idea what would happen with Sean as far as the transplant and the conditioning therapy were concerned. And up until last week, the dates for our hospital admission and the transplant were moving every time we spoke to someone from the Sydney Children's Hospital. Jonathan and I were getting more and more anxious about the whole thing, and every time we spoke to Dr Gray, we were told that "the big talk" with Dr O'Brien would happen around about 13 March, with a view to us being admitted straight after the talk.

February 2012 In Pictures

Our Vanilla Boy

Our darling little man has a brand new accessory. A nasogastric tube.

After much discussion, and several attempts to delay the inevitable, we went to hospital on the afternoon of Monday 20 February to have a nasogastric tube inserted into Sean's stomach. All morning, I had dreaded this horrific procedure, as I can still recall the discomfort of my very own nasogastric tube when I had my appendix taken out. I was 5 years old. And I've never been able to forget that horrific experience.

Sean must have sensed something was going to happen, for he was quite clingy and whingey all day long, and he took extra time to eat his breakfast and lunch, which really tested my patience. During Sean's morning nap, I cooked a mountain of my special rainbow fried rice, and divided them into 4 portions, 2 to be taken to the hospital for our dinner, and 2 to have at a later time. Jonathan went to work in the morning, with a view to meeting us at the hospital afterwards. We'd packed an overnight bag on Sunday night, so after lunch, we headed off to the hospital.

Planning For The Immediate Future

Lovers around the world celebrated Valentine's Day today, with chocolates and roses and dinner dates. We celebrated today as a family, visiting the Sydney Children's Hospital.

Yesterday, Dr Gray rang us to check on Sean, and I mentioned that Sean was having an "off" day. When he pressed for more details, I told Dr Gray that Sean was a bit more clingy than usual, and he was generally not as happy and active as he had been. Feeding Sean had also become quite laborious, often the task would take an hour to get a decent amount of food into the little man. Prior to Dr Gray calling, I had attributed this shift in mood to Sean's teething - all four of his molars were cutting through, and Sean had become more drooly over the last few days. As Sean didn't have a runny nose, nor a cough, nor a temperature, nor had he suffered any vomiting or diarrhoea, I didn't think it warranted a trip to hospital.

I did, however, think it was necessary for us to visit a speech pathologist to get some helpful hints and tips and tools to get Sean to eat his meals faster. So Dr Gray's call yesterday was timely, as I had wanted to gauge his willingness to allow us a trip to the speech pathologist. Alas, when I told Dr Gray of Sean's mood swing, he made an appointment for us to visit him in hospital for a check up, with a view to revealing some news relating to Sean's life saving treatment.

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!