Day +164: Good Riddance, Central Line!!!

From this...



To this...



It's gone!
It's gone!
IT'S GONE!!!

Our son has finally returned to his natural state. No more ugly plasticware anywhere on his body.

YIPPEE!!!

Day +121: Nasogastric Tube, BE GONE!

From this...



...to THIS!!!



It's gone!
The ugly yellow tube is gone!
The pesky tube that caused so much trouble is gone!
Gone!
Gone forever!

My beautiful boy with his beautiful face is no longer adorned by this awful ugly plastic tube.

HIP HIP HOORAY!!!

One tube down, one more to go. I can't wait till the doctors finally remove the central line. I hope it won't be too much longer.

Good riddance, ugly yellow nasogastric tube! Be gone, you awful bane of my existence! Hallelujah!

Day +107: Deisolation!

Word of the day: Deisolate.

de·i·so·late [dee-ahy-suh-leyt]

verb (used with object), de·i·so·lat·ed, de·i·so·lat·ing.

To remove from isolation.

It's official! Day +107 and about bloody time. WOO HOO!!!

Day +100: We Made It!!!

We did it!
We made it!!!
100 days since transplant!
Woop woop!

This is a major milestone for us. At Day +100, we are now officially "out of quarantine". This means a bit more flexibility and scope for me and Sean as far as where we can go, and although we still have to be vigilant about staying away from sick people, Sean is now to mix with the general public again.

All in all, we were blessed with the smooth road that Sean's been on since we were discharged from the hospital post transplant. We had only ONE return visit to hospital, very late in the piece, and there were no signs of Graft Versus Host Disease since transplant, which was amazing. We are constantly reminded by all the doctors and nurses that most BMT kids bounced in and out of hospital on repeated readmission post transplant, and all suffer from some degree of GVHD. But not our boy. Our little man is a superhero!

Day +99: See Sean Eat!

After the horrendous day we had yesterday, I wanted to focus on something good today. And Sean was happy to oblige.

The boy ate. And ate. And ate some more.

It was a sight to behold. That fussy child we had been dealing with all these weeks vanished. In his place was this ravenous child, who ate everything that was put in front of him, and more!

Sean's appetite was back with a vengeance. And I was so glad to see it. At one point, I wondered who this hungry child was and what he had done with my fussy eater of a son?! The answer: this hungry child ATE the fussy eater.

The fact that Sean was now eating well again put me in a good mood, and I set about doing the things that didn't get done yesterday with a smile on my face. We went out to the shops to buy a few things from Big W, picked up some groceries from Woolworths and got some fresh vegetables from Golden Banana.

A bit of a nothing day was had otherwise. But wait. Tomorrow is a HUGE day for us. One more day to go!

Day +98: 9.30AM is NOT Midday!

Why do we bother making an appointment to see a doctor when the doctor is NEVER on time?

Seriously, Dr Barbaric is the world's worst time manager I have ever had the displeasure of meeting and/or working with. Of all the times we have had to see her for Clinic, she has been on time less than 5 times. LESS than 5 times. Every other time, we were made to wait for up to 90 minutes to see her.

And today was no exception. But today was the worst experience of all. We didn't see Dr Barbaric until nearly midday. Two and a half hours AFTER our appointment.

AAAAAAARRRRRRRGGGGGGGHHHHHHH!!!

Day +97: Our Big Day In

With a sigh of relief, I know the light at the end of the tunnel is getting brighter by the day.

Unfortunately, someone forgot to remind the little man to just hang in there. Sean slept poorly overnight, waking a few times. Jonathan and I took turns to try and resettle Sean, who would fall back asleep for 20 or so minutes before waking and needing to be comforted again. At 5am, we decided to bring him into our room. We really should have done it a lot earlier.

Once in the safety of our arms, Sean slept. Soundly. As did I. Too exhausted to try and keep up the façade of having a morning routine, Sean and I continued to sleep until 8.45am.

As if the extra sleep was just what the doctor ordered, Sean didn't fight with me during meal times today. He continued to eat well, albeit slowly, but we were learning to take things one at a time. For now, if he was eating, we didn't mind the slow pace.

I wasn't up to doing much during the course of the day. The disjointed sleep was really wreaking havoc with my body, so I chose to spend the day indoors with Sean. My only achievement today, besides feeding and watering the little man and keeping him happy and occupied, was making a huge pot of potato and leek and bacon soup. Wow. So tasty! I was very impressed with my efforts!

We have Clinic tomorrow. We will be seeing Dr Barbaric tomorrow as Dr Trahair is away. Dr Barbaric is notorious for being late, so here's hoping we will be seen to as close to our appointment time as possible.

Day +96: Sean Is Eating Again!

18 months ago, we were holding a brand new baby. Today, that baby has turned into a toddler.

A toddler who is full of life, and giggles, and smiles, and cuddles and kisses.

A toddler who is full of mischief, and cheeky glints in his eyes.

A toddler who is full of adventure, and energy to climb on to all of our furniture.

A toddler who is full of wriggles, and just won't sit still.

And today, Sean is a toddler who is full of food, and is eating so much better again.

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.