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Treat or Manage?

Middle one's creative side

Sunshine time (although not too much with some of the meds we still have, oh and transplant in general)

We had a really good meeting with our respiratory doctor yesterday. She asked who we were going to use for general paeds in a few months once we move away from being under Dr brain the size of planet's care. I nearly cried. I don't want to see general paeds, I want Dr Brain for as long as we can. He knows little one better than any other doctor and I have always felt completely secure, safe and at peace with him. I am very (or maybe extremely) proud to call him our doctor and I want to stay with him forever, but I think that will not be the case as we move towards the management of little one's ongoing issues.

As transplant gets further away we are moving to the management of little one's issues such as respiratory, ENT, Gastro, physiotherapy, occupational therapy. Booking in regular bronchoscopes, grommets, planning for cleft repair and the change over for the peg. It feels weird but great at the same time. We are at the other end of the BMT process nearing our 12 months post date and I can not believe that it feels like yesterday but 10 years ago all in the one sentence.

One of our previous general paed doctors would say to me when they were trying to figure out what was wrong with little one... 'let's hope that it is treatable and then easily managed'... I understand that sentence more than ever know (maybe not the easily bit though, this young man is a lot of work, although so so so worth it, his happiness, strength and health is the best reward).

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I went to the woods because I wished to live deliberately,

to front only the essential facts of life,

and see if I could not learn what it had to teach,

and not, when I came to die, discover that I had not lived.

Walden, Henry David Thoreau

Hello Surf Ward... It's kind of nice to meet you

 

Back in... Once again hoping for only a few days.

It completely threw me yesterday, I was upset, crying and very very over thinking, worrying and wondering why little one can not have a week without any temp or infection. I go through the whole 'it's not fair for him, why does he have to go through this... It's not fair on the big boys' and then I move through to the I am so grateful for our beautiful doctors, I am so grateful for little one's temperament, I am so grateful for my mother and my sisters, I am so grateful for little one's patience... Overall I am feeling grateful today.

If you asked me that question yesterday afternoon when I was crying hysterically in to my mothers arms on our front lawn as she piled our big boys in for an overnight stay, then I would have answered with a whole lot of 'this is bullshit'. So I am happier with the grateful mood (oh and tired, but that seems to be the common theme at the moment and after 5 hours in DEM, anyone would feel tired).

I am grateful for little one's strength xx

Beautiful Wednesday...

Life will always be a balancing act.

 

Sunday morning

I love Sunday mornings... X

First Plasma Donation

I spent an afternoon at the Brisbane blood bank donating plasma for the first time. It was completely less daunting that I was expecting and was a relaxing afternoon with warm tea, heat packs, a very comfy chair and cosy blanket.

I was amazed about the amount of people donating plasma. The chairs were filled, donation collected and then set up again for the next generous donor. There were suits working on their blackberry's with their arm connected, there were uni students, a taxi driver and what looked like some sort of a tradie. I wanted to thank them each personally as there donations may have been received by little one at some point. I am forever grateful for such an amazing service.

I also think every day of our donor. I dont know how I can put in to words or actions the gratitude we feel for her for saving our sons life. It would have been about 3 days of pain and discomfort, but she has provided our son with a new blood system and a new life.

You can follow this link to the Australian Bone Marrow Donor Registry and see how easy it is to join if you have the capacity. If you were able to see the amazing children going through I think anyone would sacrifice a bruised pelvis (it has been described to us as being punched in the lower back by Jonah Lomu) for a few days. I personally can't wait and would be honoured for a bruised lower back if it means saving a life (although I am very biased and have never felt so passionate about it until it has affected us directly... I didn't even know what bone marrow was until this time last year... I thought it was something you fed your dog)!

I hope that if i can raise enough awareness for even a few more people to join the Registry and allow our doctors the best tissue typing option matches for their patients, I will be thrilled!

 

 

Mid week day off

Possum proofing the vege patch. Very much the vege learners and have planted lettuce, tomatoes and cabbage. The mint grows even when our boys dig it up, so that is staying strong and absolutely thriving.

Early night for all x

Home again

We made it home again on Sunday morning.

The days have been beautiful August Brisbane days and the sunshine is amazing... It's so nice to be outside again.

With no central line, we have been able to bath him properly for the first time since last September and he even had his first shower! It took him a while to get used to and then his little face seemed so relaxed with the hot water on his back... First time for everything even though it's a little late. He is doing things his own way and I am slowly learning to think about new normals and milestones.

Hopefully

I am hoping and praying that this will be the case...

At the moment it feels like we are a bit swamped.

He is amazing and our big boys are amazing, but some days are harder than others. The simple task of dressing the little one can irritate me with his oxygen tubing, but then I remind myself of how far he has come and it is know only one tube and it makes me realize that our journey is far from over, but getting easier every day...

And a few less tubes!

The Ekka comes to the Royal

 

The Ekka has started in Brisbane and they visited the Royal on Tuesday. Little one received a big showbag of toys, but sadly I missed out on a Bertie Beetle bag or a Sticks and Pops bag... I really think they should be bribing the parents too hehe!

I went down to see the baby animals on the front lawn... little one slept through the entire visit.

Our roomy at the moment received an iPod touch from the Hannah's Chance Foundation. She was so excited and cried... I had only seen her cry with nausea so it was nice to see how happy she was and to see a smile on her cute little face. What a beautiful and very simple way to bring a distraction and smile to an 11 year olds face. All of these amazing foundations really do make a difference in our lives, our roomy has been blissfully distracted for most parts of the day, so thank you to Hannah's Chance for making our roomy so happy and that her days have been a little easier to deal with.

A milestone by default?

Little one had his central venous line removed today.

Photo of his line from May 2012 (lumens wrapped up)

When our doctor told me this morning, I cried. It has been the first time that I have cried openly (in front of doctors) since August last year. It was a red faced ugly cry and I don't know where it came from. I am not sure whether it was relief as we start many sentences with, 'when his line comes out we can... bath, swim etc' or 'it will be so nice when his line comes out' as it will indicate to us anyway that active treatment and management from his transplant is coming to an end. Or I wonder if my tears were from a worry that he will need it for ongoing care, bloods and levels and will need to have a peripheral cannula every time he gets sick or needs bloods done.

Central line and new peg

The bacteria that grew last week were causing him temps and breathing distress and the line needed to be removed. His neutrophils went to 18 and his marrow has responded perfectly to fight an infection. Which is the best news.

 

Of course, I have cried tears of exhaustion, sadness, loss, excitement, relief and every other emotion in between but they have been in my own space. In the car on my way home, to my beautiful husband, to my Mum, but particularly to myself in ahot shower. It felt very odd having a teary moment over something that would seem so small, but at that moment in time it felt huge.

Little one is also having a blood transfusion this evening. He will hopefully wake up pink, energetic, yet with a very sore and swollen chest. A huge bruise (hematoma) has already come up and from a distance it looks like a camel hump on his chest.

Busier than what it has been for a few months... No feed up yet until blood is done.

My head is exhausted tonight, so I am going to sleep. Today has been a very slow blur. I am forever and more than ever on days like these grateful for the amazing strength of little one and for our doctors and nurses that make everything feel so honest yet comfortable.

Bit of an off day

 

Little one is having a rough day. Temps of 38.9 and a lot more vomiting. His temp is going down slowly, but he is not himself and breathing too fast for our liking... Not his normal fast, but faster than his normal.

Big one is fighting a head cold and middle one has bumped his head to add to his existing bruise and cut one of his sucking finger fingers.

Trying to keep them all quiet and restful... It's just one of those days. They all smile through it and I love them beyond words for it. Little ones mood is all smiles but I think he is not feeling all that great.

I am looking forward to a more direct plan with respiratory this week. I am thinking he will need a blood transfusion tomorrow as his red blood has not had a chance to catch up from the weeks blood cultures, vancomycin levels and blood counts. He hasn't had a transfusion since early April, so it's a little reminder that I am putting a little too much expectation and pressure on little one (in my mind anyway). I am going to ease back and let him dictate what he wants to do instead of pushing him with his exercises and awake time.

Today I am grateful for

A room with a view...

A hot shower...

The strength of my children...

Another 9 days

Fingers crossed IV antibiotics will be complete in 9 days time. This is our longest visit since May... We are still settling back in to organizing the big boys and keeping everything normal-ish for our little family.

9 days may not seem like a lot but after so many other days in, I am more than ready to have little one in his home and catching up on all the things he has missed out on. I'm trying to keep him in his normal routine with play time, exercises, bath time and his day time sleep. He responds better to his routine (not unlike his somewhat routine orientated homebody mother)!

 

Even More Distractions

Dreaming of making our shoe box house in to a beautiful cape cod/modern country dream boat of a home (after winning the lotto?).

House of Turquoise

Desire Empire

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