Sonshine

The need for shoes

13/11/12

The ruddy fever is back, only stayed away for a day. Yesterday we took him down to our 'Auckland house' it was so nice, I felt the teensiest bit normal. Cooked a meal for everybody, but then Joshua started losing the plot and we had again to leave again.. he was febrile.

The temperature stayed away for about 18 hrs. Then it snuck back, just a 38.2 to start with at about 4pm. We got him back upstairs and they started talking IV fluids and I was pushing him to drink, and then of course there was a projectile puke.... oh well, it meant he went for a shower without a fight anyway!

I could take him for a shower without a punch up, so to speak! Then over night he went to 39 again and then on the ward round they start talking about blood cultures, urine specs and chest xrays again. Patrick does reassure me they wont do another Lumbar puncture. It's just really depressing.

The hero on the ward is Rob, the house surgeon, a quiet unassuming bright young Englishman, who is out here for a year. He is so lovely with me, he listens to my objections and tries to compromise with me. I really appreciate the way he cares. He doesn't railroad me, just says 'this is what we would like to do, but I would like your approval' unfortunately my veiw is always the same, 'don't stab my son!'

Its still a bad time, Joshua is still very flat. I have a new child, there is pre-surgery Joshua and post-surgery Joshua. My mood goes with his and at the moment it's two very grumpy people spending 24/7 together.

This is what it's like.. Joshua wants me all the time, he never wants me to leave, but he's miserable. His only control is saying 'no'. So he says 'no' to everything, but because he's febrile, I have to push fluids and try and get him to eat. So we are constantly at war, and then of course there is the stuff that he won't let the Nursing Staff do, that I have to do, like giving him pamol in his butt and enema's and things like that. So he lashes out a lot at me and the staff and I just want to run away. It's a whole new co-dependent relationship, this beautiful little child who should be at home, running around screaming and yelling. We've always been 'inside voice Joshua" now his voice is so quiet he has to repeat himself several times before I hear him. I swear it's breaking me.

I've had to many days in a row now without the 'sonshine' the glow of the happiness that radiates warmth to me from my son. We go down to 'the school house' to take Daniel to school, but Joshua doesn't want to stay, he says he wants to go back to the hospital. We have physio looming. At physio yesterday he lay on the floor and kicked and screamed. I ask Mike for a time out, I go up to St Lukes and mooch for two hours. I'm having a bad day, the constant fevers, threats of bloods, not drinking, not pooping, and the poopy mood, it's all getting to me.

As always I find solice in a shoe shop. If I was a size 10 it would be in David Lawrence, but I'm not, so it's just as well I have damn gorgeous feet (even if the polish is chipped). So shoes it is for me. I find a 'turkish shoeshop, and I swear they look like lollies to me. I snaffle up a pair of wedges with lots of pretty colored flowers across the bridge. From the ankles down I could be Liz Hurley. From the ankles up it goes pair shaped very quickly, but I like my feet. I am concerned however that if we are here until July... that could be a lot of shoe therapy!

When I return, Joshua is a little better, Physio wasn't as bad today as it was yesterday. He's still febrile though. I have to take him back to the ward at 3pm because he's 39 c and I know they won't be happy about that. He also hasn't pee'd for about 16 hours, very worrying. He's been asleep in the buggy the last hour.

I get him upstairs to find the buggy is drenched, so he's finally peed, I start changing his pants and make a nice steamy delivery as well, so I'm most happy about that after four days with no action! So our day improves. I'm so happy to see just a little improvement, I needed it badly. So when Rob comes to see me later to say that he wants to do some bloods, just as a prick, because he's up to 38.5, I deal with it.

In my flash shoes of course.

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Toni | Reply 19.11.2012 23.20

Just catching up with everything. You really are having a bumpy ride. wish you were closer so we could do something to help but your web sight has been great.

Connie Lee | Reply 14.11.2012 22.45

I smiled at your shoe fettish :P
its the little things we that we usually take for granted that in these tough times give our spirits a little bit of a lift x x

Jared Gallagher | Reply 14.11.2012 21.17

Hi Cousins, our thoughts are with you let us know if you need anythin, you guys sound like you r handling things very well in hard times, love to you all.

Speedy Signs & EmbroidMe Rotorua | Reply 14.11.2012 17.52

Keep the head held high Annmarie and Mike. Good to hear Joshua is perking up.

Fay Henderson | Reply 14.11.2012 17.46

Annemarie, you write so well Dear, you will have to send your story to the NZ Womans Weekly. It sounds like it is really tough for you. Chin up dear xxxxx

Leanne | Reply 14.11.2012 16.58

Hi Anne-Marie, it sounds like you are doing an imazing and difficult job as mum of a sick wee boy. If you need a visit or a hand with anything, please call.x

Don Gunn, Rotorua | Reply 14.11.2012 13.52

Hey guys,
Thinking of you at this difficult time- be strong and know that there is alot of support and aroha out there for you all.

Camille Acord | Reply 14.11.2012 08.28

Sending our thoughts, love and prayers your way. I'm so sorry to learn of Joshua's illness, and pray for the best outcome for him and your family.

Caroline Andrews | Reply 13.11.2012 22.45

you are walking bravely in your 'flash shoes' - one foot after the other... one footstep at a time...
thinking of you all.

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Latest comments

13.07 | 21:33

Hi Anne-Marie - I found out about all this following a link someone liked on FB. I think of you all often. You brightened my life xxxxxx to you all.

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04.06 | 18:38

That was and amazing story so pleased you are all doing well Kind Regards Sandra Rohrlach

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08.03 | 17:48

Well done to all. Annemarie I did send a friends request on FB for "Josh updates" a couple of days ago(Mike Wish) but no reply.
Cheers to all from WA

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25.09 | 20:01

We are staying at CCF Arrowtown, and we read about your family in the guestbook. You can read about our medullo journey at www.rorygardiner.co.nz. xox

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