Too, Too Tired

Today I am tired.

I am tired of a bed that is so hard it hurts my shoulders.

I am tired of eating lean cuisine at 10pm in said hard bed.

I am tired of shopping at the quickee mart.

I am tired of water-saving shower nozzles that wet the back of my head and the back of my knees simultaneously leaving the rest of my body dry, yet somehow soak the bathmat which is outside behind a closed glass door. (with our giant brains and opposable thumbs, surely this is not the best we can come up with to save the planet… come the revolution… come the revolution!)

I am tired of seeking a laundromat to wash our clothes.

I am tired of walking back and forth up the hill to the hospital with people who have squeaky shoes and forget the keep left rule.

I am tired of eating crappy food because it is easier than trying to find something decent.

MOST OF ALL, I am tired of being so damned far away from my people.

EVEN more than that, I am tired of watching my son lose all the colour in his face every time he’s asked to do something. He is very compliant. He will swing his legs to the edge of the bed, take a deep breath, stand himself up, take bigger steps, lift his legs, lower his legs, blow in the tube and have a needle. He will do it all without complaint, but it hurts him and it exhausts him. I just sit and watch. I am tired of feeling useless.

Still going….

Yesterday Philip was able to move from intensive care to the ward. This was earlier than expected, but he was doing so very well. The scenario, as always, is baby steps and last night he had a fever and so took a small step back. Nothing of great concern, but we were so thrilled with his recovery so far that we had lulled ourselves into thinking that it would be a breeze.

I am amazed at his fortitude. I had thought that he would be a sooky, whingy patient, but he is being incredibly resilient. He is so much like me. He is asking a million questions. He spoke to us very knowledgably about his progress and care yesterday. Some Pippy quotes:

“Each night I receive an injection to prevent blood clots. It is easy for a blood clot to form when you are laying still. It is much better to prevent them than to have to cure them.”

“My blood pressure dropped last night. It made me quite woozy and pale.”

“My lung capacity is quite good for someone who has just had chest surgery. I just need to work on expanding it over the next few days.”

“I am numb from here to here (on his chest). That is the best place for an injection.”

“The anti-biotics are injected directly into the IV. You can feel them going in, that’s OK though. It means that they are working.”

Every one of these statements is a question that he has asked. The staff has been so patient in responding to everything. He is using medical jargon like a pro.

Quick Update

The surgery is over and went really well. The doctor is delighted with the results and his chest looks amazing – completely different (like a real boy’s). We had to buy a mirror so Philip could see his new body.

He is feeling no pain at all.  (Incredibly, seeing he just had eight ribs effectively broken!) The epidural is doing its work. He has just drifted in and out of sleep today as his body recovers.  He is in intensive care and will remain there for the next few days. This is a good thing. He is getting lots of attention. We saw the post-surgery x-ray and were astounded. One doctor listened to his chest and said that he could hear no evidence of a heart murmur. This information alone gives us enormous peace of mind and confirms to us that we made the correct decision.

I am grateful for all of the messages of support, even though I have not managed to find the time to respond to all of you. Melinda, he loved the pinata joke (it doesn’t hurt to laugh when you are so full of drugs!). Kirsty he was delighted by mag-neat-o in his spotty pyjamas. (you are a clever girl, although he thought that perhaps Ali had done the brilliant illustrations)

Ashleigh made it safely to Paris. It took 37 hours. When she spoke to us she sounded small and exhausted. Her body clock will be way out of synch and no doubt take a few weeks to sort itself out. She better hurry up though, because we want to see a photo of the house where she is staying. As we all know…it’s all about what we want!

Communication

At five o’clock tomorrow morning we all walk out our front door. The next time we are here in our family home together transformations will have occurred in both of my children. This is a positive thing. After a crappy few weeks there will only be growth. I marvel at the optimism of the human race, because quite frankly this week has been truly sucky for a number of reason. Yet we are still talking, joking and laughing. (by the rule of threes, you know three bad things happen in a row, we are now about to start on a good cycle)

SO… communication, keeping in touch. Ashleigh has started a blog. There is nothing on it yet, but she will post photos of stuff in France. Photos to make me jealous and proud. She thinks that she won’t have to ring me quite so much if she blogs, but HA, like that’s going to be OK! I’ve already bought a phone card that lets me ring her mobile in France from my home phone for just 2.5cents per minute. I have thirteen hours of talk time in my hot little hand right now! That should last at least a fortnight…

There is a story behind the name of her blog. I bought a learn to speak French CD and ‘le guide est tres gentil’ is one of the phrases. It means that the guide is very nice. I tried to impress a French exchange student with the phrase, telling her that I would use it when I went to France. She looked at me with a deadpan face and said, “Yeah… I don’t think you’re going to need that.” CUT DOWN, by a seventeen year old exchange student!

The hospital has an email a patient page. If you would like to send a message to Philip after between Tuesday and Sunday I’m certain that he will appreciate it. If it involves fart humour all the better, although I’m not yet sure if it will hurt to laugh. (why does every surgery make it hurt to laugh when laughter is the best medicine?)

Apart from that I may blog sporadically over the next couple of weeks. I thank all of you for your generosity, kindness and gentle good humour. You are an amazing bunch of bloggers, so I’ll leave a song for you.

Just purse your lips and whistle that’s the thing….

Old Man’s Pyjamas

Today it occurred to me that my son generally sleeps in a singlet. Perhaps he should have a button up pyjama shirt if he is having chest surgery. Off I went to a major shopping centre. I visited five different shops, but there were no button up pyjamas for boys to be found! Eventually I visited a chain store of men’s clothes. In the whole massive, overstocked shop they had just two pairs of small men’s button up pyjamas.

They are hideous, they look like old man’s pyjamas. I showed them to my son who said, “Well, at least they’re not pink.”

I bought them out of necessity. I don’t think that fashion will be a high priority for him for the next two weeks. I feel like crying over the pyjamas, everything is making me sad now…

A Civic Reception in a Rain Squall

We have had 300mm of rain in one night. A low pressure system crossed the coast above us causing wind squalls and heavy rain. Castle Hill is usually a barren rock in the middle of the city, but today it is shrouded in cloud and sprouting waterfalls where none previously existed.

 

On just the day to stay at home and sew, we had to go to a Civic Reception at the Mayoral Rooms for the Outbound Rotary Exchange students. There was some water lying on the road as we headed into town, but it wasn’t too bad. My daughter was interviewed by local radio, TV and newspaper, making her a multi-media star.

Look at that poise!

By the time we came home (an hour and a half later) small puddles had become wide lakes. I would have just stayed somewhere high and dry until it all dried up. My Pete, however, decided to be action man and  just drove right through. Can you even see where the road is and where the footpath dips away?

I’m in the passenger seat, almost wetting my pants everytime we hit a hole in the road…

We did make it home, but I had to go and lie down.

Quelle Surprise

The invitations were issued:

Red, white and blue abounded:

The friends and family patiently waited:

The guest of honour had not a clue:

Speeches were made, toasts were drunk, a quilt was signed:

There are still six days until she leaves. We surrounded her with love last night, she’ll carry us with her to Europe. You can’t outgrow something sewn under your skin.

Blogmeets (part 2)

While we were in Sydney some very brave bloggers elected to meet with me. There are lots of rumours going around that all bloggers are either hairy men or axe-wielding nutters. I can vouch for Blue Mountains Mary and Aunty Evil though.

We met with Mary and her son for Yum Cha lunch in Chinatown. We would never have even found this place without Mary’s local knowledge. Afterwards we went to the Powerhouse Museum. Mary’s son took a shine to my son and led him around the highlights of the museum while Mary and I marvelled at the Princess Diana exhibit. Mary generously gave my daughter a bag of scarves to take to France.

Aunty Evil was extrodinarily generous and picked us up from the hospital and drove us to a shopping centre. I live in a place where everything is fifteen minutes away. Aunty Evil drove for one hour to get us and one hour home again. That is an outstanding effort! We ate lunch and laughed together.

The funny thing about meeting with blogger is that, without realising it, you attribite a voice to them. When you actually hear them speak it is a little bit freaky. It takes a moment to attach that voice to the personality that you know. On both days I felt like I was just picking up with a conversation that had already begun. It certainly didn’t feel like a first meeting. I knew things about them and they knew things about me which were meant that a lot of that getting to know you stuff was done. We were able to fill in some gaps about each other and create a context for each other.

I am amazed how far they went out of their way for us. I am humbled by their generosity and their kindness.

My Pete said to me afterwards, “You know, it seems that bloggers are really just normal people.”

That is a noble attainment – congratulations, you are normal.

Surgery (post 1)

The actual purpose of our trip to Sydney was to visit a thoracic surgeon. My son has a severe pectus excavatum which requires  a surgical correction. Basically, his ribs and sternum are growing in toward his spine. At the moment he has about an inch between his sternum and spine. This has caused his ribs to touch his heart and push it to further to the left. He has a greatly reduced lung capacity. The human body is a very clever thing. It may just be that his organs adapt to the shape of his rib cage, but it could also be that later in life he has heart problems caused by the stress of this condition.

(This bit will be a bit gross, just warning in case you are squeamish)

To correct this my son will have a surgery called the Nuss procedure. A metal bar will be contoured to the correct shape for his chest. This will be done the day before surgery, then the bar will be sent to be sterilised and prepared for surgery. During surgery a small incision will be made each side of his ribs and a hole drilled through his ribs. The metal bar will then be threaded through, under his bones, avoiding his heart, lungs and major arteries. Once the bar is right through it is literally just flipped – forcing his ribs to take the correct shape. His bones will go from concave to convex in one flip of the metal bar. A camera will then be used to make certain that the bar is in the right place and that no damage has been done to any other internal organ. A three inch long section of the metal bar will extend outside his ribcage on each side of his body, just underneath the skin. This will be curved to the shape of his body and fixed to his ribs to secure the bar into place.

This is going to hurt like all holy hell. At the moment his ribs are mostly cartilage in the front of his chest. They don’t set into bone until he has finished growing. This makes it the ideal time for the correction surgery and less painful than if he had already set bone. Despite saying that he will require serious pain management. He will spend the first four days after surgery on an epidural. He will then be transitioned onto strong pain killers. It will take about six weeks for the bones to settle into their new positions and he will require some measure of pain management for the duration of that process.

You can see why it was so important to us to find the right doctor. It is a major surgery and a life-shaping moment in my son’s life. We LOVED the surgeon in Sydney. He was kind and immensely knowledgable. He listened and answered questions, he provided mountains of information. We feel quite secure about allowing him to touch our son. He wants to do the surgery right away. Initially he said next week, but we need to get our daughter off to France first. We have booked our son into the Westmead Private Hospital for surgery on the 22nd of January. My son commented afterwards that he preferred to get it done quickly. I can appreciate that- the longer you think about something the worse it becomes.

So in just over a week we return to Sydney for about two weeks. We take our comfortable, happy boy and subject him to pain. It is the right thing to do. The long term benefits far outweigh the short term pain. I would take this surgery for him if I could. I would bear this pain for him if I could. All I can do is hold his hand and provide him comfort. I have written about the surgery in a very matter of fact manner because I need to be in control of all of the  information. I cannot be in control of anything else. I will hold his hand and I will be his advocate, but I’ll cry for my baby every night.

I’m Back

Hello! We’re home. I love my house. It smells just right, it sounds just right (until Sussanah and her kids get here), it is JUST right!

I have a lot to say on several topics about our few days away. I don’t really like long posts. I get distracted from them easily. SO…I will be posting a few shorter posts, each devoted to its own topic over the next couple of hours. Sorry if it clogs up your bloglines, but it is better than a super long post which makes you bored half way through.