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.

Day +75: A Truce & An Apology

A wise woman once shared with me her golden rule to a successful marriage.

She said she never went to bed angry with her husband, even if it meant saying she was sorry even if she thought it was her husband's fault, or letting things go when he didn't even realise she was mad.

She said she always tried to go to sleep at peace with her husband, so the next day can have its own battles, and not leftover ones from the night before.

Next year, she and her husband will celebrate 40 happy years of marriage.

Last night, I tried to do that - apologise and call a truce with Jonathan. And while we were both still a bit upset about what happened yesterday, we didn't go to sleep angry with each other.

Day +74: The Biggest Barney of All Time

Funny how one glib comment could trigger an all shouting, all plate smashing, all storming out Barney that almost ended a marriage.

The Barney was not pretty. And it happened in front of children. One of the children was old enough to understand what the heck was going on. The other child was old enough to sense there was something wrong.

It was not my finest hour. I should never have lost it like that, in front of people or otherwise. But Jonathan's glib comment triggered an explosion in me, and made me a fire-breathing monster with steam blasting out of my ears.

The seething resentment that I had been feeling was exacerbated by the comment, and if my blood wasn't boiling before, it was surely red hot now.

And all I wanted was a small lie-in. An undisturbed, uninterrupted lie-in with no one else in the bed. A bit of alone time to rest, by myself, in my bed. My time off from being a mum and a wife. My bit of "me" time. Apparently, that was too much to ask for.

Day +73: Friday Before The Long Weekend

Friday before a long weekend, and I don't want the weekend to start.

As part of the Consent Orders, we must take M for the entire long weekend if it was a sleepover weekend. That meant that instead of only having M from Friday night till Sunday night, she would stay with us from Friday night till Monday night. We were forced to agree to this condition late last year, because the Evil Witch was adamant she would not sign the Consent Orders if we didn't agree to this. I was never happy about this condition, but at the time, we were running out of money to pay the legal fees, and we were completely out of patience with the Evil Witch. So we agreed, and this weekend was the first long weekend since the Consent Orders were signed.

As was usual on a Friday, Jonathan was working from the Ermington office, so I made sure he got me and Sean out of bed early enough to get some breakfast into Sean before we drove Jonathan to work. We had not had a chance to buy the groceries and food we needed for the weekend, and the plan was for us to drop Jonathan at work, and then head to the supermarket to do the grocery shopping.

One very full shopping trolley later, we headed home. It was not easy getting doing the shopping by myself - it was a chore to get all the bags in the car, and it was a nightmare getting the bags from the car into the house, and even worse while trying to put everything away, all with a very active toddler who wanted to help. In future, I will consider buying the groceries online over doing the shopping by myself again.

Day +72: 2 Hours Late!

For much of today, we were 2 hours late. The day is now almost over, and we have only just caught up.

The pleasant surprise this morning was Sean sleeping in until 9.30am. I was enjoying my sleep so much, I had no idea it was so late by the time Sean woke and sang to himself, patiently waiting for me to go to him.

Jonathan had kindly unhooked the milk pump before he left for work, and although Sean looked like he would wake at the time, he closed his eyes and went back to sleep. I vaguely recalled Jonathan leaving for work, and when I heard Sean's singing, I knew it was later than usual, but did not realise it was so late in the morning.

Waking up at 9.30am had its advantages - I felt well rested, my body was able to function and move almost immediately (my body was now taking up to 5 minutes to "warm up" every morning before it would respond to my brain's commands to move my legs and hoist myself out of bed), and the house was a little bit warmer at that time.

Day +71: Clinic on a Wednesday

A change is as good as a holiday, so they say. Today, we had a change of routine. Today, being a Wednesday, we went to the hospital for our Clinic.

Last Thursday, Dr Trahair asked us to move our Clinic day this week to Wednesday, as he was going to be running a Clinic away from Sydney on Thursday. Given we had a week's notice, there was no problem accommodating the change of date, so we booked it in with the ward and booked Sean's usual treatments with the nurses.

At weigh in today, Sean's weight was down by 150g. Not pleasing at all. Our food struggle was taking its toll. When I raised this with Dr Trahair, he said that it was common amongst transplant patients to have little to no appetite while still having cyclosporin. Dr Trahair hoped the situation would improve itself soon enough, as he was hopeful that we should be able to start weaning Sean from the cyclosporin after Day +100.

July 5 cannot come soon enough right about now.

Day +70: Mechanics are Full of Crap!

Dear Kmart Auto,

Today, you lost yourself a customer, who will be sure to tell everyone about her horrendous experience with you and recommend they all steer clear of you.

What started off as a good experience on Sunday has now turned very sour. Firstly, I never received a promised phone call from your staff yesterday to provide me with a quote for the servicing. Then, when I arrived this morning at the pre-arranged time, the car was not booked in for all the things that needed to be done.

And then, this afternoon, when I went to collect my car, your incompetent staff came up with the biggest pile of garbage and excuses and tried to pull the wool over my eyes. All your staff had to do was own up to a stupid thing that his underling shouldn't have done, remonstrate the idiot that did the stupid thing that was clearly seen by the customer, and apologise profusely with a promise to never do it again. But no, your staff felt the need to try and explain away the stupid action with the dumbest lies I'd ever been fed. Good one.

Day +69: An Inside Day

I love Mondays.

I know that sounds odd, but I have grown to love Mondays. On Mondays, I do not make plans to be anywhere, with anyone, to do anything, at any time. On Mondays, Sean and I stay indoors, and recover from the previous week. On Mondays, I catch up on my TV watching, magazine reading (sometimes), blogging (also sometimes), and rest.

Sean too likes Mondays. On Mondays, Sean knows we are going to be at home all day long, and takes the opportunity to sleep in his cot during his nap time very seriously. So much so, that often, on Mondays, Sean will sleep at least 3 hours during his nap.

Today was no exception. Today, with the weather being so cold and miserable outside, we had a lovely day in, rugged up and resting, recovering from the busy week that was last week.

Day +68: Car Troubles

After a long week, none of us wanted to go out today. But, we didn't have a choice. The front passenger side tyre needed to be replaced, or at least have a qualified tyre specialist to look at it, as it had been getting increasingly flatter every time we drove the car. This morning, it was completely flat.

While Jonathan replaced the deflated tyre with the emergency tyre from the boot, I looked up a tyre retailer to visit to purchase a new tyre.

Jonathan did some more research after breakfast, and decided we should head to Kmart Auto at Castle Hill instead. His reasoning was that Kmart Auto was in Castle Towers, a large shopping centre that could keep all of us entertained while we waited for the tyre to be assessed. There was a chance the tyre could be patched and repaired if the puncture was only small, which would cost a fraction of what a new tyre would be.

Very carefully, we drove to Castle Hill and checked in with Kmart Auto. Glenn, the store manager, booked everything in for us and told us it would be a couple of hours. We went to the shops and wandered around for a while, with Sean happily sleeping in the pram while we had some lunch.

I found the most fabulous dumpling place at the Food Court - Lok Lok Dumpling Bar. I love dumplings, and this place offered xiao long bao - little parcels of heaven made of pork mince, encased in wonton wrappers that when steamed, created a gorgeous slurp of broth within the parcels. I loved trying to pick up the dumplings without breaking the wrapper, dipping them in a little bit of vinegar, and putting the whole thing in my mouth in one tasty bite. Of course, I would always tried to be careful and anticipate the hot broth that would inevitably spurt from the dumpling, but more times than not, the broth would burn my tongue. It was a small price to pay for eating these delightful morsels.

The xiao long bao from Lok Lok Dumpling Bar was good, but it wasn't worth the 15 minute wait while being served by inept staff. Oh well. I may give them another try, if I was ever in the area again. After all, it was the beginning of lunch time and the staff seemed new and unsure of how everything worked.

While we waited for our tyre to be fixed (yes, the puncture was small so they were able to patch it up for next to nothing), we explored the shops. Castle Towers was a very large shopping centre and we knew we wouldn't have time to look through all the shops. We went to the toy shop, Target and Kmart, and that was pretty much all we had time for in the end. Glenn called us to let us know the car was ready, so we trekked back down to Kmart Auto to collect our car.

Ever the salesman, Glenn noticed that our car was overdue a service, and asked if we'd like to book it in. Jonathan felt that Kmart Auto was our best bet, as I could wait for the car in the shopping centre, instead of being stranded at the Volvo dealership while the car was being serviced. After some discussion, and a thorough check of our warranty conditions - I was afraid that using a non-Volvo repairer to service our car would void the warranty, but upon close examination, we only needed to take the car to a qualified repairer - we booked the car in for Tuesday at 10am for a service, wheel rotation and realignment, and away we went home.

In the end, it was just as well that we took the tyre to Kmart Auto. Now we can finally get the car serviced, and I get to wander the shops at Castle Towers. Talk about two birds and a stone!

Day +67: Lachlan's 2nd Birthday Party

After such a sad week, I needed a bit of cheering up, so it was timely that Lachlan was having his 2nd birthday party today!

Lachlan is the much loved son of one of my oldest friends in the world, David and his gorgeous wife Kirsty. Lachlan turned 2 about three weeks ago, but due to some unforeseen circumstances, David and Kirsty weren't able to host the birthday party until today.

Long story short, Sydney Water decided to turn their house into a big dunny - sewer pipe in the easement adjoining their property became blocked and subsequently burst, flooding the house and badly trashing one side of the house. David, Kirsty and Lachlan spent a couple of weeks in a serviced apartment while rectification works went on in the house, and even now, a month later, they were still waiting for various things to be fixed.

Day +66: A Sad Sad Day

Tears in Heaven
by Eric Clapton

Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
'Cause I know I don't belong here in heaven

Would you hold my hand
If I saw you in heaven?
Would you help me stand
If I saw you in heaven?
I'll find my way through night and day
'Cause I know I just can't stay here in heaven

Time can bring you down, time can bend your knees
Time can break your heart, have you begging please, begging please

Beyond the door there's peace I'm sure
And I know there'll be no more tears in heaven