From Awful to Good

I only managed a brief visit with Kirsten today, but it was enough for me to know that she is indeed doing better. Kirsten described yesterday and last night as AWFUL, but today after the change of pain medication and the removal of the tracheotomy she is feeling good.

The tracheotomy was remove this morning by Dr P and throughout the day Kirsten has been injecting liquid into her mouth using a syringe, this is designed to get her used to swallowing again. For the time I was there, no issues.. a few coughing or hacking / breathing difficulties, but nothing serious.

The blood transfusion was occurring during my visit, I thought it would have been a quicker process, but the small amount (300ml) is infused over a 4 hour period.

The pain medication has been changed to OxyNorm (oxycodone). It’s an opiate once again (and get be addictive). Anyone interested, check out the link here . Its part of the Endone family of Pain relief medications.

Late Mail…

Kirsten is currently having the second transfusion now, so here is hoping that the Haemoglobin Level are at the right level and she can get on with healing.

Still no visitors yet, but Kirsten will let me know tomorrow how she is feeling.

 

– Darren

2 Steps Back 3 Steps Forward

So i was a little exhausted last night to think about a lengthy post, mainly from playing 90 minutes of soccer in this unseasonal heat.

When i visited Kirsten yesterday the last drain in her neck had been being removed. Kirsten was also being prepared for the tracheotomy to be removed. this process involves deflating a small balloon thing (I cant find the name if it), things encourages Kirsten to control he breathing and swallowing (I think), this is all in preparation for the tracheotomy to be removed.

The feeding had been increased also due to concerns about Kirstens general health, there was also mentions again of blood transfusions to up her Haemoglobin levels.

Kirsten also made the huge adventure to the bathroom, 2 things to point out here.. 1. No Dignity and 2. A mirror

As you can imagine, in her current state, there is precious little things she can do for herself, attending to ones bodily needs requires assistance from nurses. To top it off, this was the first time she had seen what she looked like.. her comments.. WOW!!

The fentanyl continues to make her feel nauseous and generally all round crappy. This continues through into the night and also, as an opiate would, starts to play little mind games. I received a few texts int he middle of the night that I didn’t receive until the morning. (sorry darling)

This morning Alannah and I went out for out usual adventure to Double Bay and our favourite cafe, we had Banana Bread and Orange, and I tried to kick-start my day with a strong coffee (it worked). During our morning tea, i received a cry for help to get her off the current pain relief, a few phone calls later to the Hospital and Dr P, I was assured that this would happen. As it turned out, when i spoke to Dr P, he was 5 minutes from the hospital and would talk with Kirsten about this. Dr P evaluated Kirsten and removed the tracheotomy. The SMS from Kirsten a few hours later.

 

“Doing a lot better. Changed the pain meds (thats a known side effect). Took out trachy (breathing better). Learning to swallow now. Practicing on tea and water. Learning to make some sound”

 

Julie has spent the morning and lunch time with Kirsten. I’ve received a few updates.

1. Kirsten was “eating” warm broth for lunch

2. After deliberation, Kirsten has agreed to the blood transfusion. I know this was something that she hoped to avoid, but in my opinion (for what its worth), anything that puts her on the fast path to recovery I would vote for.

 

All in all, Kirsten is feeling better now that the tracheotomy is out and the pain medication has been changed, to what, i don’t know but will updates once i have the details. She is improving all the time and now that she is able to “eat” broth and sip on tea and water I know her spirits will be lifted, another great sign!

Time to feed Alannah her afternoon tea.

– Darren

progress continues

Im exhausted…

Kirsten is well and continues to make progress.

There have been a few things pop up and a few other things happen but I can write about that later, besides, I will have the correct information tomorrow.

So you can all rest easy, i know Im about to.

 

– Darren

No Visitors please

Hi everyone.

No visitors at the moment please. Kirsten isn’t up for them.

Thanks for understanding.

– Darren

Big Move Today

Today Kirsten was moved from ICU to her Ward Room.

I’ll go back to earlier in the day shall I?

I arrived at the hospital to find Kirsten sitting in the chair alongside her bed, she was awake and more alert than the day before, the swelling around the surgical site seems to have peaked and looked the same as yesterday, her lips maybe a little bigger. The nurse joked that some women would pay to have the look like that.. Kirsten managed a smile. Beneath that pain her humour is still alive.

Dr W, The advanced fellow in Surgery who assisted during Kirsten’s surgery dropped by and removed the drain in her leg. Another small win in her recovery. While Dr W was there, he and I had a good conversation about Kristen’s recovery and a few other little things, he also mentioned that Dr P had flashed by earlier and 2 of the 3 drains in her neck were removed. After my brief email conversation with Dr P last night, I thought that I had missed my opportunity to chat, but as i found out later, this wasn’t to be the case.

At about 12:30 both Dr A and Dr P arrived to check on Kirsten. Dr A arrived first and with Dr W’s assistance examined the Fibula Flap and then removed the dressings on Kirsten’s leg to review how it was healing. I believe the words he used were “excellent, we can now move to 4 hour monitoring of the flap”, and with this Kirsten is out of the danger period.

Shortly after this, Dr P arrived and also had the same diagnosis, although did manage to mention his proposed 40km run planned for today :). You see, Dr P has had his on Fibulectomy and loves to boast he was up and running weeks after..

Between both doctors, I received answers to a few questions, the main one being of scarring and the requirement during surgery to do a skin graft. Happy to report this wasn’t necessary, Kirsten will heal with a lovely linear scar down the outside of her left leg, no butt skin on her leg as she was overheard saying one night 😛

Her left leg wont be able to bear any weight for some time, its a pretty serious break (they took out about 10 cm of bone) and needs to be treated just like a broken or fractured leg, 6 – 7 weeks before she will be able to put weight on it. Mick, might need those crutches for a little longer, this time for Kirsten, I hope they have a “tiny” setting 😛

Shortly after this I left Kirsten to rest, not before putting in an urgent request to Julie to drop by our home and grab some of Kirsten’s moisturiser.. thanks Julie, really appreciated that one!

I was visiting a potential client this afternoon when i received a text message from Julie who had been intercepted at the ICU waiting room by some nurses who recognised her. they happily reported that Kirsten had just been moved to her ward room and she could visit as pleased.

So on to some more serious notes.

Kirsten is now able to receive visitors, but I need to ensure some of the following ground rules initially

1. If you have the slightest hit of a cold, infection, sniffle, cough or general “unwellness”, please don’t visit. Kirsten is susceptible to infections at this stage.

2. Please no kids, 2 reasons, the first is that Kirsten is still attached to many tubes and I don’t want any unfortunates issues and second, I want the first child Kirsten to see be Alannah!

3. Dont feel you need to stay if you do visit, Kirsten needs to rest and when she has visitors, she feels like she needs to be attentive.

4. Enjoy the sound of your own voice :), Kirsten can’t respond. Also please don’t mention anything about needles or blood, this makes her extremely uncomfortable and her heart rate just drastically.

5. Please call me (or email) before any visit, and please don’t be disappointed if I ask you not to visit. This is at least for the next 5 – 7 days.

6. If you intend on sending or bring flowers DO NOT SEND LILIES!! Kisten’s allergies are sensitive to them. If they are sent, please don’t be upset to find them on the nurses station

7. If you have never visited anyone who has had this kind of surgery, don’t be squeamish, the tubes and attachments can be a little confronting, these should be removed by the end of next week.

I’m hoping that the nurses in her ward are as lovely as the ICU nurses I’ve had the pleasure to deal with, but I’m a little concerned this may not be the case, there was a slight issue when they moved Kirsten with connecting the breathing apparatus to her, they forgot a tube. At first the nurse didn’t believe her but when she checked at Kristen’s persistence she found this to be the case. You see, Kirsten’s throat had gone dry which had never happened before, so she knew something was up.

So, lets hope this was a one-off issue and that her time in the ward is as comfortable as when in ICU in terms of care received.

Tash, if you read this, the lasagna was awesome!.. Rod you have something to live up to 🙂

I also think that Alannah is starting to realise that mummy isn’t around at the moment, I will have to keep an eye on this, but I’m not sure I can be mummy. She is definitely much more clingy.

– Darren

Recovery – By the Book

This post will be short and sweet, and will provide an update to how Kirsten is recovering.

I met one of the surgeons who assisted Dr P and Dr A on Monday, He was the on again and off again elusive Dr S (I think that’s Kirsten’s pseudonym for this surgeon) and he was very positive on Kirsten’s recovery to date.

He said that the drains in her neck will probably be removed tomorrow, along with the drain in her leg.

The tracheostomy will remain for a further 5 – 7 days and will be removed while Kirsten is in the ward.

The Arterial Lines connected to Kirsten will be removed once she moves from ICU to her room, and I’ve informed Dr S about Kirsten’s phobia of needles and if possible, can he leave the venous lines in as long as possible. He said this was possible, but they do need to be changed, so I only hope they are prepared for what could happen. I might talk to them and ask that I be present if this happens.

Dr S also mentioned that Kirsten’s haemoglobin levels are a little on the low side, which can be expected from major surgery, but they will monitor it and make the decision is a blood transfusion is required to get the level up again.

Physiotherapy continues, while I was there (and just as Julie arrived) they moved Kirsten from the bed to the chair. Still hard work for her and I could tell, she was sleeping more after the move. Kirsten’s pain levels still remain high, but manageable.

Dr P is in town tonight and I’m hoping that I can catch up with him after he see’s Kirsten, in fact, I might just message him right now…… Back..

Dr S believes that Kirsten may be able to be moved out of ICU tomorrow, but when Kirsten and I briefly spoke about this, she would like to remain in ICU for as long as possible, why, well each ICU patient has their on ICU nurse and a team of support staff behind them. In the ward, there are 4 patients per nurse, I know the level of care will be the same in each location, but the level of attention will be different in the ward. Knowing this, and knowing Kirsten, if she is positive about her recovery she will be all the better, for me this means her staying in ICU for as long as possible.

Julie started reading to Kirsten today a favourite book from when Kirsten was younger, called Pastures of the Blue Crane, to be honest, Kirsten didn’t seem to like or dislike it, but I believe the soothing tones of someone talking at her allowed her to relax just that little bit more. She tries to stay awake to be with us, but after the umpteenth time of use telling her to rest, I think she is now listening 🙂

– Darren

Small Steps = Great Victories

Today as you have read, Alannah and I spent the morning walking Double Bay visiting cafe’s and the bank. This meant that I got to visit Kirsten this afternoon.

Kirsten’s mum (Julie) took the opportunity to visit in the morning and had good things to report back on Kirsten’s recovery, the best news of the day is that the Lymph nodes are clear therefore no radiology is required.. YAY!!! 1st small step = 1st great victory

I’ve had a few questions from people asking about the outcomes of some of the possible complications or “on the fly” choices the surgeon’s may have had to make.

The first one is on the Mandibular branch of the facial nerve. I tried to call Dr P. to ask this simple question, but found him busy in another surgery, so, unperturbed I used my backup strategy.. email his receptionist and wait for an answer. I’m a patient person, I can wait for many things and I was surprised how much I needed to know this answer. Dr P. replied and his answer gives me confidence but really is a classic fence-sitting response.. and I quote..

“We are confident the mandibular branch of the facial nerve will be ok.

Only time will tell.”
Dr P. will be in Sydney on Thursday, so I hope to catch up with him in the morning to have a good chat on his general thoughts on Kirsten’s surgery and recovery.
2nd Small Step resulting in a Great Victory.
I received quite a shock when I first arrived to Kirsten’s ICU room, upon first glance the bed was empty.. EMPTY!!! it took me a few seconds to realise Kirsten was sitting in a chair beside the bed. As I was told by her, and the ICU nurse, this is the first steps in her physical recovery. The nurse informed me that Kirsten was given the option to have one more day in bed before attempting the move, but Kirsten being who she is shook her head and took her first steps in her physical recovery. All she wrote when I spoke with her about it.. HARD WORK!
Not long after I arrived, she needed to get back into bed, and this seemed to exhaust her. Her pain she said was 7 out of 10 and pretty much for the rest of my visit she slept and pushed that little green pain relief button. I could tell when she would stir from sleep as her heart rate would jump to the high 80’s due to pain and then drop almost immediately after the “hit” of Fentanyl.
3rd Small Step resulting in Great Victory
We did have a little set back if you could call it that, Kirsten did need to have the canine tooth removed from her left mandible. Dr P. considered the tooth too close to the tumour and they had plenty of fibula to compensate.
Small loss, but could you really call it that when its your health in question?
Kirsten seems in good spirits when she is with us, always concerned about Alannah so the first thing I talk to her about it everything that I can remember Alannah doing, saying (yelling really) or being a part of, this does bring a smile to her face and her eyes light up, so I feel good about bringing her some joy in her current world.
Quick thanks to a good friend of mine who dropped in this morning with probably 2 – 3 weeks of prepared meals for Alannah, I got word tonight from Julie that the Risotto was a hit!!

A little fun this morning

Alannah and I went for our usual cafe visit and we then went off to the bank to cash a cheque we received from the council for the deposit we place on the hall used for Alannah’s birthday party. While at the bank, the teller gave Alannah a little present

Little Devil

24 hours later

WOW, what a difference 24 hours makes! That is 24 hours after the completion of Kirsten’s surgery.

I will start this update from this morning, it started as the usual chaos in getting Alannah up, changed and out the door to day care, albeit a different day to her usual Friday. It must have been a little confusing for our little darling but she stepped up to the plate like a veteran and off we went. (I think she thought it was early morning cafe time).

We arrived at day care and that’s when I think Alannah realised that something really was up, she clung to me and didn’t want to let go, thankfully her favourite carer was there to help calm her down.

Off I went about a few morning tasks, trying to fill the void of time before I am allowed to visit Kirsten.. Mail from post office, CHECK, dry cleaning, CHECK.. coffee.. CHECK (boy I needed that one) then home only to realise about an hour had passed……..

I received a phone call from the ICU about 9am telling me that Kirsten had woken up and was asking for me and when was I coming in? During the call Kirsten also managed to ask about her photo’s of Alannah in her ward room, great to hear that she was so awake. The ICU nurse said she would make arrangements for me to enter earlier than the permitted time of 11am so off I went to the hospital.

First stop.. Kirsten’s ward room to pick up a few pictures of Alannah

Second stop.. ICU waiting room… Stopped in my tracks… ICU door troll said I couldn’t enter and would have to wait until her doctors had finished checking up on her.. I nearly lost it… but managed to remain calm, it would have been nice to have a chat with Dr A who was checking on her.. but alas, not this day.

I was finally permitted in, rushed to her room only to stand in her blind spot, you see her sight was all foggy from the pain medication. So we rearranged to room a little to have the pictures of Alannah at the end of the bed where she could look at them constantly. Once settled, a small precession of nurses came to check out our pretty little Alannah, they say she looks like me.. HAHAH!!

So enough rambling, on to what you all want to know.

Kirsten woke around 7:30am this morning and was able to respond positively to all the doctors pokes and prods, the ICU nurse told me she is progressing as expected, following the experts guide to Recovering from a Mandibulectomy and Fibulectomy, the Fibula Flap is also taking nicely, so far so good! After this initial diagnosis, she was hooked up to the feeding bag. The feeding bad is a lovely protein liquid administered through the nose directly to the stomach.

The pain relief drug being administered is called Fentanyl (this is the same one that kept her asleep) and is now being slowly withdrawn to bring Kirsten to a greater awareness, but also has a self-administering system.. all it takes is one little push of the green button and WHACK!! in it goes that extra little kick of relief.. one little side effect, it can cause vomiting, which, precisely 10 minutes into my visit happened to Kirsten. I must say, not a fun thing for me to see, how do you react to something like that when you know you are helpless to resolve the issue.. anyways, the nurses cleaned her up and took the opportunity to clean all her dressings too.

For those that have a slightly perverse interest in the surgery (I admit, I’m one of them), I got to see all the stitching and drains and blood and everything about the surgical site, quite fascinating if you have the stomach for it.

Kirsten is able to write notes and is able to ask questions so we had a good little conversation between her Fentanyl induces dozes. But she did instruct me to be honest on HER Blog, and am doing so, hence the story above. Kirsten has vowed that this will be the only time she gives me a vomiting story to blog about. (I do have more, but mum’s the word)

One thing I forgot to mention last night is that the lovely Nurse R informed me after some prodding that Kirsten didn’t need a blood transfusion, small victory for her, she found it “icky” to have someone else’s blood in her, but not he leg in her mouth 🙂

So I left the hospital and spoke to Kristen’s parents who had a visit planned for later in the day at 3pm (ICU opening hours again for visitors), gave them directions to ICU.. quite simple really, get out of the lift, turn left to the ICU waiting room….  I received a call from the ICU nurse at 3:10pm with questions from Kirsten about her parents whereabouts.. even in her state she is on the ball!.. I called them.. they were in the waiting room on level 1, but not the ICU.. 2 phones, 3 conversations on the go (I had work on hold) and managed to ease Kristen’s mind about her parents whereabouts.

During her parents visit, the ventilator connected to Kirsten was removed and she is now breathing by herself, albeit from the tracheostomy.

I’ve received strict instructions that I must include the following in tonight’s blog post

1. Her chest is clear. (i can only assume fluid in her lungs is a concern here)

2. No Blood transfusions (mentioned above)

3. She is off the ventilator (mentioned above)

4. This is interesting, her blood pressure is being measures via an arterial line directly attached to her main artery to the heart via her arm (I think). Her blood pressure is being measured at 110 over 50 and the pressure with which the blood flows is around 70, minimum accepted is 50. (I may need to clarify this second statement as I received the information 4th hand). You can learn all about it here… really you can LEARN it 🙂

Let me clarify, the last point above is my best guess, I can clarify it tomorrow if anyone’s interested, or someone may be able to comment on it here accurately

My conclusion for the day..

If Kirsten is able to wake up, asks many questions and be satisfied with the answers she is receiving 12 – 24 hours after the surgery, I’m quietly confident she will come through this early stage mind in tact and at ease with the process. All we need to hope for now is that the Fibula Flap continues to remain healthy and she will be on the fast track to healing and then home!

– Darren

Let the healing begin

I’ve just gotten back from ICU, and let me tell you, no matter how prepared you are or how much you play it over in your mind, you can’t be prepared for that first sight of a loved one in the post operation state that Kirsten is in. I like to think that I’m made of hard stuff and can handle any situation but it took me a few seconds to compose myself.

I had a good conversation with her ICU nurse, Nurse R. Nurse R ran me through all the tubes, cords, cables and wrappings that Kirsten current has attached and also spoke to me about Kirsten’s operation as much as she understood, she even spoke lovingly to Kirsten as she went about her tasks.

I did take the obligatory photo that i know Kirsten will want to use (how focused it is for her is another thing), so once she is compos mentis she can post all about it.

I must mention that she does have her phone with her, but in ICU it’s not meant to me turned on, so if you have any messages for Kirsten, please email her, or pass them my way and I will be sure to pass them on.

The ICU unit is pretty special, it’s very impressive and its great to see she has her own “room”, in my eyes, I couldn’t have had it any other way.

She is in good hands, the surgeons will check on her every morning and evening until they are confident the surgery was successful. I’m confident, the ICU nurse and ICU doctor seem confident.

Let the Healing Begin!!

– Darren