Day +95: Blissful Pyjama Day

Can I say again how much I love blissful pyjama days?

We did absolutely nothing today.
All day long.
Nothing at all.
We stayed in our pyjamas all day and did nothing.
Nothing at all.

If you were to look up the definition of "bliss" in a dictionary, you'd most likely find a picture of us lounging around in our pyjamas.

Oh, all right, that's a lie, a picture of us in a dictionary, but you get my point.

Day +94: A Much Better Day

TGIF!!!

Today was a much much better day. Sean was feeling better, behaving better, and eating better. I was so thankful for this lift in his mood. I wasn't sure how much more of his bad moods I could take.

Sean wasn't so clingy today, and was actually able to play by himself and exploring the wonders of his toys without getting upset with the littlest setbacks. I was actually able to get on with the things I needed to do without having to carry a baby on my hip or having a pair of hands tugging down my tracksuit pants.

Not only was Sean in a better mood, he was also eating a lot better. Sean ate faster, and the portions of food were bigger too. And he discovered a new love - Tiny Teddy biscuits. As a reward for eating his meals, I gave him 4 to 5 Tiny Teddies as a treat. And Sean loved them.

Day +93: Everyone Out Of Sorts

When will things go back to normal?

Everyone in our house was feeling out of whack. The only explanation I could come up with was that our routines were out of whack after our week in hospital.

We had a really bad night last night. Sean woke just after midnight and refused to go back to sleep. Whereas he would have gone back to sleep after a bit of a pat and a shush, Sean was wide awake, and no amount of comforting could resettle him.

Jonathan and I took turns trying to get Sean back to sleep. 2 hours later, with Sean still awake, we made the executive decision to disconnect the water pump and brought him into our bed. Sean promptly fell asleep, and stayed asleep until 9.30am.

Poor Jonathan. He still had to get up to go to work, which meant he got barely any sleep. I on the other hand stayed in bed with Sean until he was good and ready to get up.

Day +92: The Adults Are Weary

The past week was hard. And things threatened to get a bit harder today.

Both Jonathan and I were feeling the pinch. We were both run down, and fatigued, and hoped we weren't getting sick. Jonathan woke with a sore throat and a bit of a cough, and I felt so strained and limp all day long. I was not in the mood to fight Sean through his meals today, so I tried my best to remain calm while feeding him.

It took what little patience I had left to remain calm while I coaxed small amounts of food into Sean. It was so frustrating; the time Sean took to swallow each mouthful of food would vary between 3 minutes to 5 minutes, by which time the food would turn to complete watery mush. Often, the food would drip out of the corners of Sean's mouth, which was disgusting. I was growing ever more resentful of Sean's refusal to eat his food in a timely manner.

I was so fatigued by afternoon that I literally fell down on the couch and couldn't keep my eyes opened. Fortunately, Sean was happy to play by himself and watch the children's shows I had put on the TV, allowing me a 20-minute kip. Unfortunately, by the time I woke up, a headache had made its way into my head.

There was a bigger headache waiting us in our mailbox.

Day +91: Back to Hospital for Clinic

After spending a week in hospital, we had to go back for Clinic. I will never know why we had to go back.

We arrived at C2N at 8am, and the nurses all asked after Sean. They all asked when we were discharged from hospital, and when I told them "7pm last night", they all shook their heads and wondered why we were asked to be back in Clinic today.

No one, least of all me, understood why we had to come back for Clinic today, especially since we had been in hospital for a whole week, being reviewed by the same doctor we were seeing today.

All I could do, just like the nurses, was shake my head. After all, I wasn't a haematology / oncology doctor specialising in stem cell transplant, so if Dr Barbaric felt that we needed to be back today, then so be it.

Day +90: Home Again, Finally!

We're home!
We're home!
We're home!

So long, Kid Vampire!
So long, endless hours of screaming and screeching!
So long, idiot nurses!
So long, horrible sofa bed!
So long, nasty "garbage" ward!
So long, disgusting hospital food!
So long, irritating doctors who keep us waiting for hours!

So long, suckers!

Day +89: Still Stuck in Hospital

There was no chance of going home today. And I had so wanted to be home in my own bed tonight.

Sean's haemoglobin levels were low, as were his magnesium levels, so he needed transfusions of both. The doctors wanted to keep Sean overnight for observations after the transfusions, so the revised discharged time will be tomorrow lunch time at the earliest.

Boo.

I want to go home. I want to go home. I want to go home. I want to go home. I want to go home!

If I stomped my foot and pouted, will that be enough to get us home tonight?

If only it was that simple.

Day +88: A Whole Day of Nothing

Hospitals are funny places. You lose track of time when you are in hospital. Even more so when you are stuck in an isolation room with no windows to the outside world.

Absolutely nothing happened today. Well, that's not exactly true. Something did happen today. Something good. Tonight, we found the most amazingly glorious Thai place in Randwick. Blue Monkey Thai at The Spot made the most awesome green curry chicken, ever! Our dinner tonight was sensational. Even Jonathan, who was not a huge fan of green curry, said it was amazing! It was so so so good. We now had a new favourite place to eat in Randwick.

Sean's temperature was stable and well below 38°C all day long, which was great news. The blood tests showed that Sean may be in need of a blood transfusion, but the doctors would wait for the results from tomorrow's tests before proceeding with a transfusion if required. Sean's magnesium levels were definitely on the low side, so the doctors gave him an injection to boost his levels. In light of the latest information, we were told that we would not be going home until 8.45pm tomorrow at the absolute earliest.

Day +87: Two Steps Forward, One Giant Step Back

A much better day was had today, as we all managed to get some much needed sleep.

Amazingly, Kid Vampire slept last night. Yes, he slept, at night, and pretty much through the night. The long sleep he had during yesterday must have whet his appetite for more sleep last night, and the entire ward including patients, carers and staff were grateful for the respite.

Trust me when I say that we were not the only people suffering from Kid Vampire's screaming and screeching through the night. Kid Vampire was so loud that whenever he started up his complaining, it woke all the other kids in the ward. I was not the only patient's carer who wanted to shut Kid Vampire up, and certainly was not the only person to have complained about his behaviour. No wonder his mother did not want to be seen on the ward.

It wasn't an incident-free night though, with Sean spiking a fever of 38.5°C at 4.30am, around the same time the NG tube was blocked. The nurses and I tried our very best to unblock the tube, but our efforts only made Sean even more awake than before, so after two different pumps and various flushes later, we abandoned the idea of the continuous feed and switched off the machines. After some cuddles, Sean went back to sleep and stayed asleep until 7.30am.

Day +86: Febrile To The Max!

The only word to describe the mood in our room today was febrile.

Kid Vampire screamed sporadically throughout the night. After waking Sean at 11.30pm last night, Kid Vampire stopped screaming, as if he was glad that someone else was now screaming in the ward and he could have a rest. It took me until 2am to resettle Sean, before the damn heart rate monitor alarm started ringing loudly. The peals of the alarm woke Sean again, and for the next hour, Sean cried and cried and cried. It took another hour to get Sean to calm down to the point where the heart rate monitor did not sound, and he finally went back to sleep at around 3am.

Kid Vampire started screaming again almost as soon as Sean fell back asleep, which kept me awake for some time. I was beyond exhausted and passed out for what felt like a minute before Sean woke again. The nurses who came in to take Sean's bloods woke him at 6.15am and by this point, there was nothing I could do to get Sean back to sleep. Excellent. Another night with 3 hours of sleep. A total of 9 hours of sleep over the past 3 nights. Bloody awesome.

Day +85: Will the Kid Vampire Ever Shut Up???

I had forgotten just how noisy the "garbage" ward was.

So noisy. So so noisy. And it didn't help that we were in a room next to a kid that didn't stop screaming.

That's right. The kid screamed. And screamed, and screamed some more. If he wasn't screaming, he was screeching. If he wasn't screeching, he was shouting. If he wasn't shouting, he was screaming. And it went on, and on, and on. All yesterday afternoon. All last evening. All night. And all through the night.

The kid in the room next to us has two settings: loud and off. If he was awake, which was the majority of the time, he was loud. We only experienced the "off" setting for about 3 hours today. And he was only in the "off" mode because he passed out. After screaming and crying all night, I was not surprised he passed out.

Day +84: Readmission

Almost.
We almost made it to Day +100 without incident.
Close but no cigars.
We missed it by THIS much.

Sean was readmitted to the Sydney Children's Hospital today, after he spiked a fever of 38.2°C. There were a number of factors that the doctors considered - Sean may have been sick with a virus, he may have had a bad reaction to the IVIg, or a bit of both.

Any way you looked at this, Sean was going to have to spend a couple of days in hospital while the doctors worked out what was wrong with him. Yay.

NOT.

Day +83: Hangover Monday

Another day in for me and Sean, and it seemed Sean definitely needed it.

Sean seemed a bit out of sorts today; much more clingy, and definitely a lot less interested in eating. It took forever to feed him any of his meals, and all of his boluses of milk took ages as well, as his NG tube felt like it was blocking up. It was awfully frustrating to see Sean struggle against his food. After sitting for hours on end, trying to coax a relatively small amount of food into Sean, Bad Mummy here was in no mood to comfort and cuddle him during non-feeding times.

As if he was trying to tell me something, Sean slept for 3 hours during his "nap" today. I didn't mind him sleeping for 3 hours, but it was a bit unusual for him to be down for that long.

Since Sean didn't wake until well after 2pm, there was no point heading out to the shops. We stayed at home and in our pyjamas for the rest of the day. Wherever I went, so too did my little shadow.

Day +82: Sunday At Home

I wish every weekend was like this one.

After a fun day yesterday, followed by an amazing night last night, today was a blissful day spent at home, in our pyjamas, doing nothing at all.

The rain finally cleared to a lovely sparkling sunny day, but the air was still cold and everything was still damp from the heavy rains. We could have gone out, but we decided a day in was best for all of us.

We spent the day doing as little as possible. Jonathan played his game on PS3, I played around on the laptop, and Sean played with his toys and around the both of us.

Today was blissful. I'd love more days like today, and definitely more weekends like this one.

Day +81: A Lovely Unexpected Dinner Party

We had an awesome meal with some friends today, but it wasn't who we expected.

Early this morning, we received some bad news from Charmaine about the health of her family members. Christian had brought home a cold from day care earlier in the week, and as he got better, Charmaine caught the bug and was laid low. She was just getting better and was feeling well enough to socialise today, when Sam started showing symptoms of the cold. In light of Sean's lack of immune system, we felt it best to postpone our lunch to another day.

As much as Charmaine and I missed each other, we all felt it best that Sean was not exposed to any cold or flu-like germs for the time being. We made arrangements to have lunch next weekend, and hoped everyone will be well enough by then to be in the same room.

The day was dawned cold and miserable, and it rained all day long. It was best for those who were not feeling well to stay in bed all day.

Day +80: A Whole Day of Nothing

What a nothing day today turned out to be.

Not that I minded. Well, I did, for a little while, but in the end, it was fine to have a nothing day.

With Jonathan working from the Ermington office, we were all "allowed" a bit of a sleep in. One of the wonderful things about Jonathan working from the Ermington office was that it was so close to home - his office was a 15 minute drive from home, which often meant we didn't have to get out of bed until 8am, sometimes even later.

I had wanted to go out to the shops after dropping Jonathan at work, but that meant we had to be out of bed, dressed, and Sean fed before taking Jonathan to work. That didn't happen this morning. Everyone stayed in bed for much longer than anticipated, and by the time we got dressed, it was too late to try and feed Sean any breakfast.

Day +79: Clinic Day + Early Mark!

Today had to be the quickest visit to the hospital for Clinic EVER!

I barely had time to get everything out and get Sean fed and watered before we were given permission to leave. It looked like we were finally getting these pesky hospital visits down to an art form.

We arrived at 8am, to be greeted by a pair of closed doors. The nurses were still having their morning meeting to discuss the patient load for the day, but soon, the doors were thrown open and we were ushered into an isolation room.

The nurses were super quick with what they had to do with Sean today, so we were able to get on with breakfast in record time. Dr White was quick with her examination of Sean, and before we could say "boo", Dr Trahair was in the room doing his review as well.

Day +78: A Visit from Aunty Caitlin!

Sean and I had the most lovely visit from our gorgeous friend Caitlin today!

It was so lovely to see Caitlin. It had been months and months and months since we had seen Caitlin. The last time we saw Caitlin was when I still owned the apartment in St Leonards, when she was still working for the concierge service contracted to the building. Caitlin had left that job shortly after I sold the apartment, after securing an amazing job designing high end carpets and rugs for the rich and famous.

For the past year, Caitlin had been working hard at her job, and with everyone being busy with various things, we had not been able to catch up for a very long time. The last time Caitlin saw Sean was when he was a few months old and a little lump. Caitlin had very much wanted to see Sean again, and late last week contacted us to see if we could meet up for a play date.

I had been following Caitlin's adventures on Facebook, and had seen in recent weeks that she had left the amazing job designing high end carpets and rugs for the rich and famous. Caitlin had some time on her hands at the moment, so we arranged to have her drop in for lunch and a good catch up today.

Day +77: Someone Has Missed His Cot!

Sean must have really missed having his day sleep in his cot over the past few days. Today, he reclaimed his cot and slept like a boss.

For over 3 hours. Boom!

I wasn't too surprised that Sean showed his cot who's boss. He didn't have a good nap in the cot on Friday after our big grocery shopping expedition, he was being dragged to Chatswood in the walking stroller on Saturday, and he napped in the smaller stroller on Sunday as well as yesterday, with both of the naps being short and sweet.

Even though today was Tuesday, it was still our first day after the weekend, and as with every other week, today was our "recovery day".

Day +76: A Lovely Lunch with Friends

I loved today, and I really could have more days like today.

With the Queen's Birthday long weekend drawing to a close, we were happy to be spending the day relaxing with good friends David and Kirsty. At their little boy Lachlan's birthday party last weekend, Kirsty and I tentative arranged a get together with our families and Chuck and Kyung for today, since Chuck and Kyung thought Lachlan's party was this weekend. After finally getting in contact with Kyung, we found out they were both working this weekend, so Kirsty and I went ahead with our plans to catch up.

The weather was horrendous, so if we didn't have plans, we would have been staying home all day anyway. Kirsty and I were still finalising our plans for today over the last couple of days, so she was well aware of the Barney on Saturday. I was grateful we had somewhere to go today, as I didn't feel like a day at home. Besides their fun and friendly company, Kirsty was offering cocktails and her sympathetic ear, which sounded like a really nice way to spend a cold rainy afternoon.