Friday newsday

I had a long chat with Roshni last night, she says that if I continue to improve as I have been, I could be home mid next week.

I am trying not to get too excited, because anything could happen between now and then, but I am still really thrilled.

And a little bit scared.

A lot has happened since I was last at home, I was still pregnant, still hopeful. I had been on bedrest for ages, but I hadn’t been sick. Now I feel like a different person. Mothering Inigo has made me a different person, and now mothering Archie and Aubrey has changed me again.

It will take a long time to adjust to this new normal.

Still having fevers

But still optimistic. I am going to beat this!

And today, when my fever went above 38 again, I asked a nurse to check with the docs to see if they wanted to do another blood culture (previously they have taken 2 tubes of blood every time I went over 38, which sometimes happened a few times in one day). Today the doctor said, “no, I don’t want to take any more blood from that poor woman”.

See, they are looking after me!

Medical update. Still waiting for an official call by the infectious diseases department as to how long they think I will need to be in IV antibiotics. If it’s only a week or so, we will keep going with cannulas, but if it will be more than a few weeks they will want to try again for another PICC line. You can probably guess which way I would prefer!

Again, my sense of humor has mostly returned after a short holiday on Monday. Thanks for all your messages of support.

Here is a picture of my beautiful Inigo, sleeping without a care in the world at Grandmas house a few days ago. I am going to try to add in a few pics to break up the endless text and misery 🙂

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A bit better today

Today, I didnt spike a fever until 6pm – thats over 12 hours between fevers, a record since all this started. And, when it did come, it peaked at 38.2, much better than the 39s I have been getting!

I am thrilled. Am due another chat with the Infectious Diseases team tomorrow, will update again after that.

And I would like to say a special thank you to the members of the Inner city knitters guild who made a group donation to the smocking guild on behalf of Archie and Aubrey. We were given a beautiful gown to dress Archie in for the last time, made with love by volunteers from the smocking guild, and it meant so much to Mark and I to have such a special garment to dress our precious baby in. The donation will pay for materials to help the volunteers to continue their work. Lets hope they dont spend it ALL on poxy pastels.

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Lara’s crappy day

More fevers. Docs decided to drain ooze.

Another cannula tissued. I think it is my mutant clotting factor that keeps blocking them and fluids start going into my tissues (instead of the vein), leaving large, painful bruises. Docs decided to put in a PICC line.

Was told I could have both done together under a twilight sedation – ie, I would be off my head when it happened. I signed a consent form.

PICC line nurse came and told me that it couldn’t be done all together. That I couldn’t have the twilight sedation, but it wouldn’t be that painful, and it would be all over within half an hour. She lied.

It was painful, and it took ages. And it failed.

She got from below the crook of the arm, to the armpit, and then it wouldn’t go any further. After over an hour of stinging local anaesthetic, poking, prodding, pulling, and quite serious pain, she was forced to give up and pull everything out.

By that stage I was almost hysterical, and they left me alone to chill out for a while. And I had missed Oprah.

Poor dad was almost as traumatised as I was, so a few hours off was a huge relief.

Eventually the douchecanoe* came to wheel me down for my next procedure. I asked the nurse that accompanied me about the sedation, and she said she would ask when we arrived.

On arrival, I was told that “we don’t do that here”, and “it’s not an option”. At this point, the pain was getting worse and my temperature was rocketing. I had also missed two doses of antibiotics, so the feelings of fear, pain, and extreme sadness were almost overwhelming.

So I cracked it. I refused to consent to the procedure until I was able to speak to my doctor. I got cranky about being patronised, being told that I was being a wuss, that I was causing trouble, that I was compromising my medical care.

Fuck that. I know my rights, and I know what I am capable of withstanding. And I know I am not a wuss. There are many things you can say about me, but I don’t think anybody has the right to call me a wuss – especially after these last few weeks.

So eventually the gorgeous Armani arrived (part of Team Lara), and arranged some valium for me, as well as another cannula – so at least they can get antibiotics into me while we argue about the PICC line again.

I got the valium (tablets), and 30 mins later went in for the procedure. The valium had not yet taken effect, but I was feeling a little calmer.

Under ultrasound, they found the pocket of ooze has shrunk, and there was no point doing an aspiration. Then they did a CT scan just to be sure.

Tomorrow we will look at the result of the CT scan and have another confab. More news as it comes to hand.

But I would like it on the record that being needle shy after everything I have been through does not make me a wuss.

And I would like to say a huge thank you to Steph, who despite having three kids of her own, has been by my side so much this last week, and I honestly don’t know how I would have go through some of those days without her humour and strength.

*Speaking of the douchcanoe – both Steph and mum met him today, and bot agree with my assessment that he is generally a kind man who means well, and there is no benefit in reporting him.

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Medical update

A few people on facebook asked for more info on what was happening medically. Feel free to skip this if you are weak of stomach or easily upset. I wish I could 😉

There is a collection of fluid in the lining of the uterus underneath the wound site. They were hoping the antibiotics would get in to the encapsulated infection, before the infection got into the bloodstream. But no such luck – my blood is growing something, which means I am going septic.

The first (and most conservative) type of surgery is to use ultrasound to guide a needle into the pocket of ooze and try to drain it out. A D&C on a uterus that has been through so much is likely to be risky.

That being said, we are now at the point that if they dont do something to stop the fevers, I am risking brain damage, and even death. This is not something to freak out about, but it has gone beyond seroius, and is now very serious.

I am now 9 days post surgery, and they are trying another, very hard core antibiotic as a last ditch attempt to avoid surgery. Apparently this one can have some side effects, so I might be in for an interesting night.

As for how one person can deal with so. much. crap? I dont know. But think the Oxycontin helps.

The douchecanoe

Thanks for all your supportive comments about the wardsman, but I don’t want to make a complaint. Firstly, because it was the best laugh I have had in weeks, secondly because I am pretty sure he was horrified by what he had said, and I am sure he will think twice before opening his gob again. Thirdly, I do think he had special needs, and the last thing I want to do is for him to suffer over something that was really trivial for me – really, really.

And the final reason – I have a burning need to have a big whinge to the hospital about something much more important. On Saturday morning, just after we had said goodbye to Archie, and were still in a heightened state of shock and trauma, a doctor came in and said (in a very offhand manner), “we are going to give you something to dry up your milk”. Luckily I was still lucid enough to ask for more info. I wanted to talk to a Lactation Consultant and get more detail before I made a decision. But is was a Saturday, and there is no LC available on the weekends. Because women stop having breastfeeding problems on the weekends, right?

So I rang an ABA friend who is an LC, and imposed of her professionalism, and asked her the question. She can’t give me medical advice, but she can give me general information. Like – Dostinex can cause headaches and seizures. And for a very long time, women have been managing lactation suppression naturally. Since not much of this pregnancy has been natural (except the conception!), I decided I wanted to let my body cry its milk tears, and let my body deal with it. Of course, this decision has consequences too – you can suffer from engorgement, pain, and sometimes mastitis. Being an ABA counsellor, I was able to read the ABA Lactation Suppression booklet, and I knew what to do, and what warning signs to look out for.

After about five days, I felt I was going OK on my own, but I thought it was a good idea to chat to an LC, and perhaps ask her to examine my breasts for warning signs of infection (because I need another infection, right?). The nurse that I asked happened to be an LC, she asked a few quick questions about how my boobs felt, and then she left and came back a few minutes later with a bag of ice to put into each bra cup.

Helpful, and it relieved a bit of pain, but still no-one has examined my breasts, or talked to me about how the process is going. And of course I don’t blame my lovely nurse – she has been particularly awesome, even staying behind after her shift had ended to change my sheets because she knew I had been sweating. It’s not the nurses, it’s the hospital system! Please, if you have time, go to One2Four and sign their online petition. I can tell you from experience (week 4 now!), that the nurses are massively overworked, and yet you still couldn’t hope to find a more lovely, caring and gentle group of women (I have not had one male nurse yet).

So it wasn’t until yesterday when I had a visit from my lovely independent midwife Robyn, that someone actually checked my breasts. And yes, I can do my own checks, but there are bits of them I can’t see!

And since I can’t see the hospital spontaneously changing their policy, this will happen to many more women unless I complain and get a review process started.

And I think that is more important than a man with foot in mouth disease.

P.S. Temp is on the way up again. Don’t freak out, it is what I expected. What we are looking for is a gradual downwards trend, not a miracle cure (unless you can line one up for me Sally?).

Sensitivity training video – the “before” scene

The scene – the hospital room of a woman who has recently given birth to two dead babies. Present, the woman, a friend of hers, and the two year old child of the friend.

A wardsman enters to take the woman for a chest x-ray.

Wardsman (to woman, indicating two year old): He’s a bit big for a newborn!

Woman: No, that is my friends toddler.

Wardsman: Where is your baby?

Woman: My baby died.

Wardsman: Oh. Oh well, it could have been worse, it could have been twins.

Woman: It was twins. They both died.

Wardsman: Oh. Sorry about that. You know, my dog is always peeing on the carpet, but I can’t toilet train him, he’s too old. What do you think I should do?

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This is pretty much a word for word transcript of a conversation I had this week. It seems unbelievable, but I assure you, I have a witness that was a lot more lucid than I was at the time, and she assures me that my recollection was correct. He also kept talking about his dog and cat peeing on the carpet the WHOLE WAY down to X-RAY, where he then left me alone for a minute, and then came back and harassed me about the pee until I was saved b the X-Ray technician.

At least I have a sense of humour!