This song has carried Jon and I through the last couple of months.
http://
The whole album (which is AMAZING) can be downloaded here for free. I highly recommend it.
Monday, October 31, 2011
Sunday, October 30, 2011
Tutorial: Baby Origami
Things are...let's not use the 'Q' word...LESS NOISY here at the moment so I thought I would take a moment to introduce you to my new favourite pastime - baby origami!
No, that is not folding babies. It is folding things around babies. Silly.
This is a wrapping style that I learned during our first PICU stay. The reason it is so fantastic is it can wrap a baby for comfort and security but still allow easy access (and if necessary a visual line) to their chest.
DISCLAIMER - this wrap is not suitable for every special needs baby in every situation. Use common sense and a nurse - your nurse generally has more of a clue than some chick on the internet. But as a parent in a hospital situation I know how valuable it can be to take an active part in the day to day care of your baby and I have WOWED a few nurses with this wrap...on that note....
We will start with our subject - the beautiful Kaylee
Just for a little bit of perspective, see those green straps next to her shoulders? They go around most babies' waists. I will be using a flannel the same dimensions as a cloth nappy (OK, it IS a cloth nappy) for this demonstration but if your baby isn't fun size you may have to get something a little bigger.
Place the baby slightly to one side of the middle of the wrap. If you are planning to lay the baby on their side, make the short side the same side you will be laying them on. Make sure all leads and tubes are going downward toward bub's feet without any kinks or nasty tangles. Alternatively, you could have the leads and wires etc going upward over your baby's shoulder, it all depends on what and where they are placed. If in doubt, ask a nurse.
Take the corner of the short side and fold it down over the baby's arm like SO.
Then take the straight edge of the short side and fold it across the baby. You may have to hold that first fold down while you do this, it depends if your baby is flailing around yelling blue murder or peacefully sleeping. Be careful to leave the chest exposed.
Tuck the edge you just folded across your baby firmly under your baby's side like SO.
Now take the corner of your long side and fold it down over your baby's other arm like SO.
Then fold the long side across your baby and tuck it firmly under their side like SO.
Again being careful to leave the chest exposed.
Now the baby's arms will be held firmly next to their body which helps calm some babies and prevents their Moro reflex from waking them once they're asleep.
The lower part of the wrap will be like a long tube. Gently flair the bottom of the tube so it looks a little like a mermaid's tail. Singing "Under The Sea" from The Little Mermaid at this point is entirely optional but highly recommended.
Now fold the mermaid's tail up toward the baby's head. If the tail completely covers the chest area you may choose to fold it back on itself to expose the chest. Be careful of leads and tubes (yes, because that is something I need to remind you of I am sure.)
Tuck the corners of the mermaid's tail in and you now have a well wrapped baby.
The best thing about this method is nurses can check respirations, chest wound sites, monitor dot placement etc without unwrapping the baby. Also, it can be used when the baby is under a warmer because the chest and temperature probe can be left exposed.
Now go and amaze your friends at dinner parties! Well, it will work if they are paediatric nurses...
And hence we draw to the conclusion of possibly the wordiest tutorial on how to wrap a baby ever written complete with dodgy, poorly lit pictures (hey, I do words, not pictures!). You're welcome!
No, that is not folding babies. It is folding things around babies. Silly.
This is a wrapping style that I learned during our first PICU stay. The reason it is so fantastic is it can wrap a baby for comfort and security but still allow easy access (and if necessary a visual line) to their chest.
DISCLAIMER - this wrap is not suitable for every special needs baby in every situation. Use common sense and a nurse - your nurse generally has more of a clue than some chick on the internet. But as a parent in a hospital situation I know how valuable it can be to take an active part in the day to day care of your baby and I have WOWED a few nurses with this wrap...on that note....
We will start with our subject - the beautiful Kaylee
Just for a little bit of perspective, see those green straps next to her shoulders? They go around most babies' waists. I will be using a flannel the same dimensions as a cloth nappy (OK, it IS a cloth nappy) for this demonstration but if your baby isn't fun size you may have to get something a little bigger.
Place the baby slightly to one side of the middle of the wrap. If you are planning to lay the baby on their side, make the short side the same side you will be laying them on. Make sure all leads and tubes are going downward toward bub's feet without any kinks or nasty tangles. Alternatively, you could have the leads and wires etc going upward over your baby's shoulder, it all depends on what and where they are placed. If in doubt, ask a nurse.
Take the corner of the short side and fold it down over the baby's arm like SO.
Then take the straight edge of the short side and fold it across the baby. You may have to hold that first fold down while you do this, it depends if your baby is flailing around yelling blue murder or peacefully sleeping. Be careful to leave the chest exposed.
Tuck the edge you just folded across your baby firmly under your baby's side like SO.
Now take the corner of your long side and fold it down over your baby's other arm like SO.
Then fold the long side across your baby and tuck it firmly under their side like SO.
Again being careful to leave the chest exposed.
Now the baby's arms will be held firmly next to their body which helps calm some babies and prevents their Moro reflex from waking them once they're asleep.
The lower part of the wrap will be like a long tube. Gently flair the bottom of the tube so it looks a little like a mermaid's tail. Singing "Under The Sea" from The Little Mermaid at this point is entirely optional but highly recommended.
Now fold the mermaid's tail up toward the baby's head. If the tail completely covers the chest area you may choose to fold it back on itself to expose the chest. Be careful of leads and tubes (yes, because that is something I need to remind you of I am sure.)
Tuck the corners of the mermaid's tail in and you now have a well wrapped baby.
The best thing about this method is nurses can check respirations, chest wound sites, monitor dot placement etc without unwrapping the baby. Also, it can be used when the baby is under a warmer because the chest and temperature probe can be left exposed.
Now go and amaze your friends at dinner parties! Well, it will work if they are paediatric nurses...
And hence we draw to the conclusion of possibly the wordiest tutorial on how to wrap a baby ever written complete with dodgy, poorly lit pictures (hey, I do words, not pictures!). You're welcome!
Saturday, October 29, 2011
20 signs I've been here too long!
You know your child has been in hospital too long when...
1)....you can tell ten things about a new nurse instantly from the colour of his/her scrubs and style of his/her shoes.
2)....your hands don't feel 'clean' until there is hand sanitiser involved.
3)....you have stopped licking your fingers when cooking/eating because hand sanitiser tastes gross.
4)....you know that a good nurse will stop a mediocre doctor from killing a patient but if a mediocre nurse came on shift you'd be afraid to go and pee for 8 hours.
5)....you know which alarms to worry about and which ones you can switch off and tell the nurse about later and which ones you switch off and ignore.
6)....you know what each "code" means when it is called over the PA system.
7)....the nurses tell the patients of new admissions to ask you if they can't find a nurse and they want to know something.
8)....your family and friends need a dictionary of medical terms to understand you.
9)....you firmly believe your morning mocha should qualify for a medicare rebate
10)....you wonder if the seemingly permanent twitch in one one of the bags under your eyes will burn off the calories from your medicinal mocha.
11)....you know which floor of the hospital contains which speciality off by heart.
12)....you can find your way around the hospital. At all.
13)....you threaten to beat anyone who uses the "Q" word (quiet).
14)....you know which hospital 'rules' you need to obey, which ones you can bend and which ones you can totally ignore.
15)....you have at least three good friends who have children with life threatening conditions.
16)....four or more of your child's doctors know you well enough to tell you that you look awful.
17)....you not only know the names of most of your nurses, you also know their hobbies, favourite books and movies and children's names.
18)....you have ever helped the cleaner as a form of stress relief.
19)....the nurse comes in to see that you have taken full obs and written notes.
20)....you consider 3 tubes and 5 wires attached to your child to be completely manageable, in fact, almost normal!
Here's to going home soon.
And here's a bonus 5
21)....you know which days to avoid the cafeteria
22)....you know what times to avoid trying to get a coffee (the cue between 8-9 weekdays is INSANELY long)
23)....you are on a first name basis with staff from at least five different departments
24)....you consider it a good thing if appointments etc. are running late because you know it means your child isn't the most urgent case.
25)....you have unintentionally memorised the roster of the cleaners, ward clerks and kitchen personnel.
1)....you can tell ten things about a new nurse instantly from the colour of his/her scrubs and style of his/her shoes.
2)....your hands don't feel 'clean' until there is hand sanitiser involved.
3)....you have stopped licking your fingers when cooking/eating because hand sanitiser tastes gross.
4)....you know that a good nurse will stop a mediocre doctor from killing a patient but if a mediocre nurse came on shift you'd be afraid to go and pee for 8 hours.
5)....you know which alarms to worry about and which ones you can switch off and tell the nurse about later and which ones you switch off and ignore.
6)....you know what each "code" means when it is called over the PA system.
7)....the nurses tell the patients of new admissions to ask you if they can't find a nurse and they want to know something.
8)....your family and friends need a dictionary of medical terms to understand you.
9)....you firmly believe your morning mocha should qualify for a medicare rebate
10)....you wonder if the seemingly permanent twitch in one one of the bags under your eyes will burn off the calories from your medicinal mocha.
11)....you know which floor of the hospital contains which speciality off by heart.
12)....you can find your way around the hospital. At all.
13)....you threaten to beat anyone who uses the "Q" word (quiet).
14)....you know which hospital 'rules' you need to obey, which ones you can bend and which ones you can totally ignore.
15)....you have at least three good friends who have children with life threatening conditions.
16)....four or more of your child's doctors know you well enough to tell you that you look awful.
17)....you not only know the names of most of your nurses, you also know their hobbies, favourite books and movies and children's names.
18)....you have ever helped the cleaner as a form of stress relief.
19)....the nurse comes in to see that you have taken full obs and written notes.
20)....you consider 3 tubes and 5 wires attached to your child to be completely manageable, in fact, almost normal!
Here's to going home soon.
And here's a bonus 5
21)....you know which days to avoid the cafeteria
22)....you know what times to avoid trying to get a coffee (the cue between 8-9 weekdays is INSANELY long)
23)....you are on a first name basis with staff from at least five different departments
24)....you consider it a good thing if appointments etc. are running late because you know it means your child isn't the most urgent case.
25)....you have unintentionally memorised the roster of the cleaners, ward clerks and kitchen personnel.
Friday, October 28, 2011
A general update
Kaylee has been having little spells of her heart slowing down. It isn't terribly dangerous at the moment, it is just something to watch and look into so we've been doing that for a few days now. It seems to be related to her reflux so next week her NG tube is being switched for an NJ tube. That means that instead of going into her stomach her food tube will be placed so it goes into her small intestine. It doesn't require any surgery or anything, just a radiographer so it can be checked properly. On a day-to-day basis it will mean that Kaylee will be on continuous feeds with a "kangaroo pump". It will be interesting having to keep her plugged in once we are home! But it is manageable and it is not an uncommon thing to have to work around.
We are heading into a long weekend and the ward is always delightfully quiet over the weekend. Kaylee and I will be moving into an isolation room tomorrow so rather than having a four bed room to ourselves we will get a one bed room to ourselves. The biggest thing this will mean for us is it guarantees our privacy and guards our quiet which will be lovely.
Kaylee's IV antibiotics finish on the 3rd of November and it will be fantastic to get rid of the central line. It is in an awkward place and I am constantly paranoid about it getting messed up when she fills her nappy or bumped when I change her or pick her up.
Yesterday I ended up leaving the hospital at 1am by the time I had finished everything I wanted to do here and expressed so I am pretty tired today. I ended up going back to Ronald McDonald House to do some laundry and having a nap for an hour or so this afternoon. I am tired and somewhat cranky and completely ready to go home! Soon...
We are heading into a long weekend and the ward is always delightfully quiet over the weekend. Kaylee and I will be moving into an isolation room tomorrow so rather than having a four bed room to ourselves we will get a one bed room to ourselves. The biggest thing this will mean for us is it guarantees our privacy and guards our quiet which will be lovely.
Kaylee's IV antibiotics finish on the 3rd of November and it will be fantastic to get rid of the central line. It is in an awkward place and I am constantly paranoid about it getting messed up when she fills her nappy or bumped when I change her or pick her up.
Yesterday I ended up leaving the hospital at 1am by the time I had finished everything I wanted to do here and expressed so I am pretty tired today. I ended up going back to Ronald McDonald House to do some laundry and having a nap for an hour or so this afternoon. I am tired and somewhat cranky and completely ready to go home! Soon...
Thursday, October 27, 2011
M & D University
I bet you didn't know I am studying full time at the moment.
I am attending M & D University - that's Moses and David University.
Both these leaders got a rigorous training before taking on their famous roles.
Both of them spent time as shepherds, in royal court (David as court musician, Moses as an adopted son of Pharoh's daughter), David was a guerilla warrior and mercenary while being pursued by Saul, Moses was the son in law of a tribal leader and priest who possessed great wisdom and insight. These experiences prepared them to take on arguably the two most influential positions of the old testament. The skills they learned during those years - about 40 for David and 80 for Moses - served them well as they led Israel and shaped history. One day I am going to write a book examining the skills Moses and David would have learned during these periods and how those skill would have served them in their more well known roles - but for now I will leave it up to your imaginations and go on with talking about me - because this is all about me, check the name of the blog.
One day my role as mother will be less intense in terms of the time and physical effort it needs. I had thought that perhaps when my kids are grown and independent I may take on another job of some type. I change my mind about what kind of job about as often as a five year old does. My top ten at the moment are: lactation consultant, foster parent(perhaps specialising in caring for kids with special needs), play therapist, hospital teacher, special needs teacher, social worker, poly-culture farmer, occupational therapist, child psychologist and writer/poet. Curiously, other than hospital teacher, all of these were jobs I was thinking about before Kaylee arrived.
Almost every day I am learning skills and collecting knowledge that would help me in any and all of these occupations. From the basic skills such as time management, creating working relationships with diverse people and assertiveness to the more specific skills and knowledge set of lactation, hospital life and dealing with special needs children - I am learning more every day than I ever did in a whole semester at university. I don't know for certain what job God has in store for me, I am just trying to pay attention to the lessons being brought to me and pass each course I take.
I think sometimes if we pay attention to the lessons of being a shepherd or a home maker or whatever is going on in our lives RIGHT NOW rather than worrying about getting a piece of paper or promotion, we will find ourselves prepared for much greater thing. Things that have an eternal impact.
That's what I think anyway.
I am attending M & D University - that's Moses and David University.
Both these leaders got a rigorous training before taking on their famous roles.
Both of them spent time as shepherds, in royal court (David as court musician, Moses as an adopted son of Pharoh's daughter), David was a guerilla warrior and mercenary while being pursued by Saul, Moses was the son in law of a tribal leader and priest who possessed great wisdom and insight. These experiences prepared them to take on arguably the two most influential positions of the old testament. The skills they learned during those years - about 40 for David and 80 for Moses - served them well as they led Israel and shaped history. One day I am going to write a book examining the skills Moses and David would have learned during these periods and how those skill would have served them in their more well known roles - but for now I will leave it up to your imaginations and go on with talking about me - because this is all about me, check the name of the blog.
One day my role as mother will be less intense in terms of the time and physical effort it needs. I had thought that perhaps when my kids are grown and independent I may take on another job of some type. I change my mind about what kind of job about as often as a five year old does. My top ten at the moment are: lactation consultant, foster parent(perhaps specialising in caring for kids with special needs), play therapist, hospital teacher, special needs teacher, social worker, poly-culture farmer, occupational therapist, child psychologist and writer/poet. Curiously, other than hospital teacher, all of these were jobs I was thinking about before Kaylee arrived.
Almost every day I am learning skills and collecting knowledge that would help me in any and all of these occupations. From the basic skills such as time management, creating working relationships with diverse people and assertiveness to the more specific skills and knowledge set of lactation, hospital life and dealing with special needs children - I am learning more every day than I ever did in a whole semester at university. I don't know for certain what job God has in store for me, I am just trying to pay attention to the lessons being brought to me and pass each course I take.
I think sometimes if we pay attention to the lessons of being a shepherd or a home maker or whatever is going on in our lives RIGHT NOW rather than worrying about getting a piece of paper or promotion, we will find ourselves prepared for much greater thing. Things that have an eternal impact.
That's what I think anyway.
A (part of a) day in the life...
6:30 - alarm goes off and I drag myself out of bed and prepare for the day.
7am - I check in with the night nurse about how the night went, meet the next shift nurse and express the ocean of milk trying to explode out of my chest
8am - Feed, change, massage and tidy up Kaylee, chat with our nurse and plan my day
9am - hang about to talk to the ward doctor, case manager nurse and any other random people I need to talk to. Listen in on rounds
10am - have breakfast and express a little more then deliver my milk downstairs (it gets delivered back to ward thickened and measured) and find that I forgot to put a sticker on one of the bottles. Take it back up to the ward with me an put it in the fridge until later. Meet up with some other heart Mums in the parent room over the once a week Heart Kids morning tea.
11am - Try Kaylee at the breast with the help of the lactation consultant. She does very well and manages to get 5ml on her own. I set the rest of her feed going through her tube.
12 n - Change the dressing on Kaylee's central line. Sticker the bottle of milk I forgot earlier and deliver it. Pick up my lunch from the basement kitchen. Settle in for some lunch with Kaylee.
1pm - eat lunch while I write e-mails to the kids next to Kaylee's bed.
2pm - Set Kaylee's feeds going and check her over. Talk to our Case Nurse and the ward doctor (our doctor one the pool on what colour the Queen would wear to open the new hospital building! Pink is our favourite colour in Cardio - we encourage the children to stay pink.). Sit and blog for a little bit before going to express again.
Plans for the rest of the day include: Expressing, meeting up with a friend who is dropping off some food for me, putting Kaylee to the breast again, walking to the post office to get some post packs to send my warm tops home (the weather has changed and I want to save luggage space), having tea, changing and feeding Kaylee and more expressing. I usually leave the hospital about 10pm and start it all again tomorrow.
I may have a little nap in the chair at some point today.
Long days, but the view makes it all worthwhile.
7am - I check in with the night nurse about how the night went, meet the next shift nurse and express the ocean of milk trying to explode out of my chest
8am - Feed, change, massage and tidy up Kaylee, chat with our nurse and plan my day
9am - hang about to talk to the ward doctor, case manager nurse and any other random people I need to talk to. Listen in on rounds
10am - have breakfast and express a little more then deliver my milk downstairs (it gets delivered back to ward thickened and measured) and find that I forgot to put a sticker on one of the bottles. Take it back up to the ward with me an put it in the fridge until later. Meet up with some other heart Mums in the parent room over the once a week Heart Kids morning tea.
11am - Try Kaylee at the breast with the help of the lactation consultant. She does very well and manages to get 5ml on her own. I set the rest of her feed going through her tube.
12 n - Change the dressing on Kaylee's central line. Sticker the bottle of milk I forgot earlier and deliver it. Pick up my lunch from the basement kitchen. Settle in for some lunch with Kaylee.
1pm - eat lunch while I write e-mails to the kids next to Kaylee's bed.
2pm - Set Kaylee's feeds going and check her over. Talk to our Case Nurse and the ward doctor (our doctor one the pool on what colour the Queen would wear to open the new hospital building! Pink is our favourite colour in Cardio - we encourage the children to stay pink.). Sit and blog for a little bit before going to express again.
Plans for the rest of the day include: Expressing, meeting up with a friend who is dropping off some food for me, putting Kaylee to the breast again, walking to the post office to get some post packs to send my warm tops home (the weather has changed and I want to save luggage space), having tea, changing and feeding Kaylee and more expressing. I usually leave the hospital about 10pm and start it all again tomorrow.
I may have a little nap in the chair at some point today.
Long days, but the view makes it all worthwhile.
Tuesday, October 25, 2011
I was standing at the lift this morning and my ward doctor told me I looked exhausted. This confirmed to me that I did, indeed, need a mocha! On the way to get one I passed the stalls that are in the foyer fundraising five days a week for the hospital and I saw it. The same stall that I bought clips from that day a few weeks ago when I found out I was going home to Tasmania. I lost the clips in Hobart a day or two later which had upset me somewhat so I was THRILLED to find them again. Small things. Here they all are clipped on to the card the ward clerk in Launceston made for me. Hopefully we will be going home soon.
Kaylee tried drinking from a bottle for the first time ever. She did beautifully for her first go, considering she had a general anaesthetic yesterday and open heart surgery a week and a half ago! Today was a day when she did everything she was meant to and nothing she shouldn't.
Our room mate left for South Australia today so we have our room to ourselves and I am sleeping here tonight, next to my girl. I am getting her feeds ready and doing all the "Mum" things - and loving every minute!
Monday, October 24, 2011
Perfect ten
Central line? I poke me tongue out at your central line.
The risks involved in any procedure give me the willies and of course the anaesthetist needs to describe them all to me just before she goes in. As she goes off I am expecting to come back to, at best, a groggy, unhappy baby - at worst another stint in PICU, or worse.
I went down to discover a bright, happy baby gazing around like nothing had even happened with a beautiful, clean and tidy femoral line in her left leg.
Sailed through with a perfect ten.
Just for something different.
Also, if the lovely person who sent me some food today is reading this, can you leave a comment and let me know who you are? In the haze of surgery I didn't quite catch who it was who left the two yummy meals for me!
Sunday, October 23, 2011
Always Knock On Wood
Today we were changing the dressing on Kaylee's central line. For those who do not know, this is a line into a major artery by which we can give Kaylee drugs. I had never been a big fan of this particular line into Kaylee's neck. Put aside the fact that a great hookin' tube was coming out of my daughter's neck, it has been oozing blood, wiggling around and carrying on from the beginning. Today the sutures that were holding it in gave way and the whole thing came out. While there was a bit of blood, there was no immediate danger to Kaylee when this happened however it has made the next bit a whole lot more complicated that it was!
Kaylee needs a central line because her course of antibiotics (which goes until November 3rd) is delivered through it. Getting a peripheral line (a line into her arm or leg) into Kaylee is hard and they stop working usually within a few days and we can't constantly be putting new ones in because that will cause scar tissue to build up and make it even harder to get a line in - seeing as she will need at least two more surgeries before her first birthday we need to preserve all the line access we can get!
So we are giving Kaylee's meds a different way until tomorrow when a cardiac theatre will be available to put in her line under a general anaesthetic - making the third general she has had so far. It isn't hugely dangerous but is also not without it's risks. The fact that she will have oral antibiotics overnight (and NASTY ones at that) also bugs me as it will muck up her gut flora.
So what have we learned boys and girls? We have learned never to say "Tomorrow we will try suck feeds.". It seems to always end in tears! Every time we have said it so far, something has happened to stop it!
Kaylee needs a central line because her course of antibiotics (which goes until November 3rd) is delivered through it. Getting a peripheral line (a line into her arm or leg) into Kaylee is hard and they stop working usually within a few days and we can't constantly be putting new ones in because that will cause scar tissue to build up and make it even harder to get a line in - seeing as she will need at least two more surgeries before her first birthday we need to preserve all the line access we can get!
So we are giving Kaylee's meds a different way until tomorrow when a cardiac theatre will be available to put in her line under a general anaesthetic - making the third general she has had so far. It isn't hugely dangerous but is also not without it's risks. The fact that she will have oral antibiotics overnight (and NASTY ones at that) also bugs me as it will muck up her gut flora.
So what have we learned boys and girls? We have learned never to say "Tomorrow we will try suck feeds.". It seems to always end in tears! Every time we have said it so far, something has happened to stop it!
My Miss Crazy Hair
I gave Kaylee's hair a good scrub yesterday thinking I may tame it.
It seems there is no taming that mop!
It seems there is no taming that mop!
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