Logan received a large brown box in the mail today... he opened it up and inside was a treasure trove with a card attached. After the humerous well wishes, a poem was written... relating to the items enclosed:
Dear Logan
We hear you are having a rough time (coconut roughs)
That maybe you have bitten off more than you can chew (Zombie Chew)
That you might even have a chip on your shoulder (Pringle)
And now you are ready to go nuts (Deluxe nut mix)
Could this be true?
Nah - without letting the cat out of the bag (Kitkat)
Even though we know this is no piece of cake (Madiera cake)
We know that you can roll with the punches (Roll-ups)
Because you are one of a kind! (One square meal)
Blow a big raspberry at the challenge (Raspberry twister)
And keep up the good fight
We hope to catch up with you soon (Tomato sauce (Ketchup))
Hugs and kisses (Hersheys kisses)
The Schippers (Shapes! (tho was expecting a boat))
Thanks guys... you had us laughing for ages..... and Logan is looking forward to having them when he can eat again...
Oh... and thanks for the coffee (for the grown-ups)... you even remembered that I have decaffinated!
Wednesday, October 19, 2011
Awesome Website
Recommend this awesome website as the 'what you want to know' guide about transplants.
www.marrow.org
It is American, but pretty much the same. Happy reading.
Tracy
www.marrow.org
It is American, but pretty much the same. Happy reading.
Tracy
Transplant - Day 9 - I think I'm in love...
Last night Sophie gave me the best night I've had in at least two weeks (sorry Evan)... a gorgeous brunette, Sophie gave me what I needed... and let me sleep through the night...
All night long, Nurse Sophie cared for Logan, getting to his machines before they beeped and making sure that Logan had everything he needed from about 12.30am, until I woke and 8.30am... what more could a mummy want?
Worth her weight in gold, I think I will recommend her for promotion and an increased holiday break!
Anyhoo... I digress again... This blog, is of course about Logan, so Logan we shall talk about.
This morning the docs came around, followed by the pain team. The docs said that Logan is doing as he should. His mucositis is becoming severe, but manageable - no infection, touch wood. The mucus build up in his throat and mouth often make him cough, and his mouth is sticky and raw at the same time. His liver is slightly enlarged, so they are going to do a scan (they come to the room), and I will keep you posted on that (no pun intended) His billirubin is 40 instead of 20, but that's not too bad cause jaundiced people can be in the hundreds. They just need to monitor the liver and its trends. He is retaining fluid, and went all night without peeing, consequently they have given him more pee juice this morning, which hasn't done anything yet! His hands and feet are often burning, and the rash has spread to his thighs, elbows and upper arms (which are not burning yet). His diarrhea has eased off, though he still gets the stomach pains from time to time. They kind staff have located ear plugs for him and Evan bought him an eye mask (we couldn't find his fancy one at home), so he is able to get more rest in our noisy ward. Even though we are in isolation, the noise is more than enough to keep him awake. There is a toddler a few doors down who screams day and night, and is terrified of everyone that goes into her room... it's awful to listen to, but they cant get near her to give her the pain relief she needs... If it was me, I think I'd sit on her and jab her in the butt! Poor thing.
Digressing again... anyhoo, Logan sleeps as I type this, with his feet poking out the end of the bed (to stop them from burning under the blankets) and his hands on top (for the same reason)... not sure what we are suppose to do when the bits in the middle start to burn, cause I sure dont want have everything exposed to the elements! The doc says it is definitely engraftment and they are just waiting for his blood counts to begin to come up now... unfortunately his red cells are down at the moment so another transfusion is required today, or tomorrow. They have run out of lines for the moment.
Logan's nose tube is now permanently disengaged and only used for meds. He prefers me to give them, as I dont rush it, so I have learnt to do this. It includes drawing stomach juices up, testing it to make sure it is acidic (as sometimes the tube can come up and pop into a lung) with a test strip, then slowly pushing in whatever med they say followed by a flush. The usual med is something I affectionately call ouzo, though they assure me its not. It has a similar name! I have become quite good at it and will put up a pic next time I do it.
On discussion with the pain team today, Logan finally agreed to have a base dose of morphine (1mg) pulsing through, as well as the top ups that he does with his manual pump (2mg), which have also been increased so that he can push it every 5 minutes instead of 10. They said kudos to him for using his meditation, which they see as being really effective, and praised him on his inner strength. But they also suggested if he combines it with morphine, it will enable him to relax more, and get better benefits from his inner strength.
If I may go soppy for a while (really this part is for Mum's only), it is so hard to watch him lie there. He is often in so much pain. I can't hug him, or hold him as it makes things worse, and even a peck on the cheek can hurt. They say it will be worse before it gets better... but still he does not complain, or moan... he does not argue and throw tantrums... he just accepts and goes into himself in a sort of meditative way. He is my baby... and this is not how it is suppose to be... and I want him to get on-line and send me a really sarcastic comment and make me laugh again!
OK!... that's all the self pity allowed!(everyone else can start reading again now) Now... a big thanks to my darling friend who laminated all Logan's pics that his friends drew when he first got sick, and sent them up here to put on his walls. They look amazing. Thanks to Nana and Grandad who send him cards once or twice a week... he loves getting them and proudly hangs them on his wall... Thanks to bed sis Amanda, who painted some artworks for him and sent those... he loves them. Thanks to Canteen, who visit Logan daily to see how he is and if they can do anything for him. Thanks to the Child Cancer who visits every couple of days, and brought some grocery vouchers and a phone topup for Evan. Thanks to Leukemia and Blood Foundation who gave us a grocery voucher. Thanks to Brad and Charlee who are looking after the house at home. Thanks to the people who stop by home from time to time with goodies for Brad and Charlee, so they dont feel alone and do actually eat a decent meal from time to time.
A big shout out to all of you lovely people who continue to keep us in your thoughts and love... we are blessed to have you...
Until then... keep smiling
Tracy
All night long, Nurse Sophie cared for Logan, getting to his machines before they beeped and making sure that Logan had everything he needed from about 12.30am, until I woke and 8.30am... what more could a mummy want?
Worth her weight in gold, I think I will recommend her for promotion and an increased holiday break!
Anyhoo... I digress again... This blog, is of course about Logan, so Logan we shall talk about.
This morning the docs came around, followed by the pain team. The docs said that Logan is doing as he should. His mucositis is becoming severe, but manageable - no infection, touch wood. The mucus build up in his throat and mouth often make him cough, and his mouth is sticky and raw at the same time. His liver is slightly enlarged, so they are going to do a scan (they come to the room), and I will keep you posted on that (no pun intended) His billirubin is 40 instead of 20, but that's not too bad cause jaundiced people can be in the hundreds. They just need to monitor the liver and its trends. He is retaining fluid, and went all night without peeing, consequently they have given him more pee juice this morning, which hasn't done anything yet! His hands and feet are often burning, and the rash has spread to his thighs, elbows and upper arms (which are not burning yet). His diarrhea has eased off, though he still gets the stomach pains from time to time. They kind staff have located ear plugs for him and Evan bought him an eye mask (we couldn't find his fancy one at home), so he is able to get more rest in our noisy ward. Even though we are in isolation, the noise is more than enough to keep him awake. There is a toddler a few doors down who screams day and night, and is terrified of everyone that goes into her room... it's awful to listen to, but they cant get near her to give her the pain relief she needs... If it was me, I think I'd sit on her and jab her in the butt! Poor thing.
Digressing again... anyhoo, Logan sleeps as I type this, with his feet poking out the end of the bed (to stop them from burning under the blankets) and his hands on top (for the same reason)... not sure what we are suppose to do when the bits in the middle start to burn, cause I sure dont want have everything exposed to the elements! The doc says it is definitely engraftment and they are just waiting for his blood counts to begin to come up now... unfortunately his red cells are down at the moment so another transfusion is required today, or tomorrow. They have run out of lines for the moment.
Logan's nose tube is now permanently disengaged and only used for meds. He prefers me to give them, as I dont rush it, so I have learnt to do this. It includes drawing stomach juices up, testing it to make sure it is acidic (as sometimes the tube can come up and pop into a lung) with a test strip, then slowly pushing in whatever med they say followed by a flush. The usual med is something I affectionately call ouzo, though they assure me its not. It has a similar name! I have become quite good at it and will put up a pic next time I do it.
On discussion with the pain team today, Logan finally agreed to have a base dose of morphine (1mg) pulsing through, as well as the top ups that he does with his manual pump (2mg), which have also been increased so that he can push it every 5 minutes instead of 10. They said kudos to him for using his meditation, which they see as being really effective, and praised him on his inner strength. But they also suggested if he combines it with morphine, it will enable him to relax more, and get better benefits from his inner strength.
If I may go soppy for a while (really this part is for Mum's only), it is so hard to watch him lie there. He is often in so much pain. I can't hug him, or hold him as it makes things worse, and even a peck on the cheek can hurt. They say it will be worse before it gets better... but still he does not complain, or moan... he does not argue and throw tantrums... he just accepts and goes into himself in a sort of meditative way. He is my baby... and this is not how it is suppose to be... and I want him to get on-line and send me a really sarcastic comment and make me laugh again!
OK!... that's all the self pity allowed!(everyone else can start reading again now) Now... a big thanks to my darling friend who laminated all Logan's pics that his friends drew when he first got sick, and sent them up here to put on his walls. They look amazing. Thanks to Nana and Grandad who send him cards once or twice a week... he loves getting them and proudly hangs them on his wall... Thanks to bed sis Amanda, who painted some artworks for him and sent those... he loves them. Thanks to Canteen, who visit Logan daily to see how he is and if they can do anything for him. Thanks to the Child Cancer who visits every couple of days, and brought some grocery vouchers and a phone topup for Evan. Thanks to Leukemia and Blood Foundation who gave us a grocery voucher. Thanks to Brad and Charlee who are looking after the house at home. Thanks to the people who stop by home from time to time with goodies for Brad and Charlee, so they dont feel alone and do actually eat a decent meal from time to time.
A big shout out to all of you lovely people who continue to keep us in your thoughts and love... we are blessed to have you...
Until then... keep smiling
Tracy
Tuesday, October 18, 2011
Transplant Day +8 - Evening Edition
As the sun sets across Auckland City, I cast tired eyes at Logan... who in turn is trying desperately to sleep. He is wearing a blindfold, and ear plugs, but they dont seem to be having an effect.
Last night was a rather long one. Logan and I conned Evan into staying in the hospital with us and doing a 'shift' with me. To be fair, Evan has offered several times to swap with me, whilst I sleep at Ronald, but I haven't chosen to take him up on his offer.
Last night, we both slept in Logan's room... good thing it is fairly large. Evan settled down on the lazy boy chair, and courteously gave me the bed. However, sleeping was not to be on the cards. Just after I settled in at 10.30pm, Logan's blood pressure shot up. This was taken several times to check, and the doctor was called. He also appeared to be in the positives on his fluids... which meant that he had retained more than he had expelled... 2 litres to be exact. Fluid retention is often the cause of high blood pressure, so a drug called foruzamide (and I have no real idea of how to spell that), is given to encourage peeing.
Anyway, at some time in the wee hours, when his blood pressure had gone down, and his feet had stopped burning, and his tummy had stopped cramping, and his medicine machine had stopped beeping, I climbed into bed.
Evan's shift started at 4am, and so, kind soul that I am, I gave him my bed and climbed into his chair as he helped Logan to the bathroom. Mmmmm... comfy chair. I commenced to sleep quite well, knowing that Evan was on duty and I was not. Evan spent the rest of the early hours assisting Logan... It was so nice to have some sleep. It's not till you get to have a straight sleep (4am - 8.30am) that you realise how constantly waking and dozing makes you feel like crap!
Today, Logan has been really tired. Unlike Evan and I, who were able to take turns, Logan was up most of the night, on and off, having his obs done, having cream put on various parts of his body, and generally having a crap night.
He did try to make up for it today, but unfortunately, that was not to be. He is so exhausted, he can barely stay awake on the loo, but is so over tired that he keeps jerking awake in bed. When he does sleep, he is having amazingly vivid dreams, which he quite enjoys, but also wake him up. He often has difficultly telling the difference between reality and dream, and asks me questions to see which is real. The last question he asked me was "do you recall Dad telling us about the toilet paper incident?" Which I didn't, so he decided he was in the real world with me. Me, I would be totally freaked out, but he just finds it amusing...
Anyhoo, the docs are happy with how he is going. He has also developed some petechial hemorrhaging on his arms, and stomach. His platelets were very low again, down to 13 today, and he has small nose bleeds as well. Provided he stays put in bed, and doesn't fall over (touch wood), he should be fine... but bleeds are not uncommon.... rather something they keep an eye out for.
Tomorrow, all going well, Logan should be having a couple of surprise visitors from Hamilton. One will be staying the night, so I hope he sleeps well tonight!
Well, I have run out of stuff to say, (I know... shocker!) so TTFN... love and hugs to all...
Tracy and whanau
Last night was a rather long one. Logan and I conned Evan into staying in the hospital with us and doing a 'shift' with me. To be fair, Evan has offered several times to swap with me, whilst I sleep at Ronald, but I haven't chosen to take him up on his offer.
Last night, we both slept in Logan's room... good thing it is fairly large. Evan settled down on the lazy boy chair, and courteously gave me the bed. However, sleeping was not to be on the cards. Just after I settled in at 10.30pm, Logan's blood pressure shot up. This was taken several times to check, and the doctor was called. He also appeared to be in the positives on his fluids... which meant that he had retained more than he had expelled... 2 litres to be exact. Fluid retention is often the cause of high blood pressure, so a drug called foruzamide (and I have no real idea of how to spell that), is given to encourage peeing.
Anyway, at some time in the wee hours, when his blood pressure had gone down, and his feet had stopped burning, and his tummy had stopped cramping, and his medicine machine had stopped beeping, I climbed into bed.
Evan's shift started at 4am, and so, kind soul that I am, I gave him my bed and climbed into his chair as he helped Logan to the bathroom. Mmmmm... comfy chair. I commenced to sleep quite well, knowing that Evan was on duty and I was not. Evan spent the rest of the early hours assisting Logan... It was so nice to have some sleep. It's not till you get to have a straight sleep (4am - 8.30am) that you realise how constantly waking and dozing makes you feel like crap!
Today, Logan has been really tired. Unlike Evan and I, who were able to take turns, Logan was up most of the night, on and off, having his obs done, having cream put on various parts of his body, and generally having a crap night.
He did try to make up for it today, but unfortunately, that was not to be. He is so exhausted, he can barely stay awake on the loo, but is so over tired that he keeps jerking awake in bed. When he does sleep, he is having amazingly vivid dreams, which he quite enjoys, but also wake him up. He often has difficultly telling the difference between reality and dream, and asks me questions to see which is real. The last question he asked me was "do you recall Dad telling us about the toilet paper incident?" Which I didn't, so he decided he was in the real world with me. Me, I would be totally freaked out, but he just finds it amusing...
Anyhoo, the docs are happy with how he is going. He has also developed some petechial hemorrhaging on his arms, and stomach. His platelets were very low again, down to 13 today, and he has small nose bleeds as well. Provided he stays put in bed, and doesn't fall over (touch wood), he should be fine... but bleeds are not uncommon.... rather something they keep an eye out for.
Tomorrow, all going well, Logan should be having a couple of surprise visitors from Hamilton. One will be staying the night, so I hope he sleeps well tonight!
Well, I have run out of stuff to say, (I know... shocker!) so TTFN... love and hugs to all...
Tracy and whanau
Monday, October 17, 2011
Transplant Day +7 - Evening edition
What a lovely day... Paul and Yvonne came visiting, fresh from their adventures in Europe... and it was the first time, since Rosemary visited, that I have seen him animated. Though obviously still in pain, he amped up his morphine, and sat up and chatted for over two hours. Several times we asked him, if we should go for a walk and let him sleep, but he always replied in the negative.
Logan's trips to the bathroom have been less frequent since they removed him from the feeds. They want to rest his gut for at least 24hrs before restarting him on small amounts. Having said that, he is still having about 4 cups of water a day, and one or two cups of milo, so is doing well.
His rash is a bit worse today, and they are pretty sure that engraftment is beginning. Topical steroids were prescribed to ease the burning on the pads of his feet and back of his hands. It appears to give some relief.
They have also given him some stuff which is like runny red jelly - xylocaine - which he swirls thru his mouth to create a numb feeling... pleasant for as long as it lasts.
Logan's bedside pole is beginning to look very impressive... he now has three drips, one of which has his special feed into the vein, and the others for meds and fluids, and a forth box with morphine. Makes for some heavy duty maneuvering in the night...
Tonight, Evan will be staying up at the hospital with me. Logan will be having drugs through the night, and we are going to split the hours between us so I can get some sleep. I find it hard to leave Logan, so this is a good compromise. Knowing Evan's tinny luck, Logan will sleep through the night which will get him wondering what all the fuss is about!
We have a lovely nurse this evening who is trying so hard to co-ordinate all Logan's medicines so that we wont be up every five minutes... it will take a miracle, but we will take what we can get.
Anyhoo... We shared a lovely home cooked meal with Paul and Yvonne on the ward this evening. Paul and Evan cooked for us down at Ronald McDonald, then brought it up here to eat. It was a treat to eat with friends.
Logan was sound asleep when we went back to the room, so they headed off, homeward bound to Hamilton. We miss them already... it is hard to say goodbye to Hamiltonians.
Hope you enjoy the photos... just a couple to whet the appetite...
Catch ya on the flip side... MWAH!
Logan's trips to the bathroom have been less frequent since they removed him from the feeds. They want to rest his gut for at least 24hrs before restarting him on small amounts. Having said that, he is still having about 4 cups of water a day, and one or two cups of milo, so is doing well.
His rash is a bit worse today, and they are pretty sure that engraftment is beginning. Topical steroids were prescribed to ease the burning on the pads of his feet and back of his hands. It appears to give some relief.
They have also given him some stuff which is like runny red jelly - xylocaine - which he swirls thru his mouth to create a numb feeling... pleasant for as long as it lasts.
Logan's bedside pole is beginning to look very impressive... he now has three drips, one of which has his special feed into the vein, and the others for meds and fluids, and a forth box with morphine. Makes for some heavy duty maneuvering in the night...
Tonight, Evan will be staying up at the hospital with me. Logan will be having drugs through the night, and we are going to split the hours between us so I can get some sleep. I find it hard to leave Logan, so this is a good compromise. Knowing Evan's tinny luck, Logan will sleep through the night which will get him wondering what all the fuss is about!
We have a lovely nurse this evening who is trying so hard to co-ordinate all Logan's medicines so that we wont be up every five minutes... it will take a miracle, but we will take what we can get.
Anyhoo... We shared a lovely home cooked meal with Paul and Yvonne on the ward this evening. Paul and Evan cooked for us down at Ronald McDonald, then brought it up here to eat. It was a treat to eat with friends.
Logan was sound asleep when we went back to the room, so they headed off, homeward bound to Hamilton. We miss them already... it is hard to say goodbye to Hamiltonians.
Hope you enjoy the photos... just a couple to whet the appetite...
Catch ya on the flip side... MWAH!
 |
| Logan's mucositis begins in his mouth |
 |
| Logan after his nasal tube was installed |
 |
| Paul having a laugh with Logan |
 |
| Yvonne laughing at Paul, laughing at Logan |
 |
| The mucositis worsens, you can see the red rawness on the left of the tongue |
 |
| The red rash on his feet is painful and burns |
 |
| The rash on his hands looks quite angry |
Sunday, October 16, 2011
Transplant Day +6
A brief entry today... maybe... I do tend to waffle...
Thanks to the visitors Logan has had over the weekend... Paul and Sue, Charlotte and Dan and Michael and ???? (oooh I feel bad cause I cant remember her name... sorry pretty girl), and today we were graced with the presence of Brigitte and Manda (who took me for a drink) he he he.
Logan still full of sh## today. They reduced his feeds during the day and cut them entirely at 10pm. They feel he is expending more energy going to the bathroom getting rid of the food than he is having it. They will discuss with us the other option tomorrow, being a TPN (something, something, nutrition).
Logan is snoring quietly as I type this (something unusual for him) and he has begun to have a raspy cough. Will probably have a chest xray in the morning.
He has developed a viscous red rash on his hands and feet which may be Graft vs host. It is early but we will see what the team says tomorrow. He says it burns so I have been rubbing cream on it. He is sleeping with his blanket across his bed rather than down to leave his feet free.
Logan managed to drink 4 cups of water today... YAY!
Evan with my brother watching the rugby tonight... I said he could stay there and come back in the morning... but Logan said no, he wanted him back here in case I needed him, (shock horror) so Evan agreed and said he would see us bright and early in the morning.
Anyhow, this is suppose to be brief. I have photos but too tired to post them. Maybe tomorrow...
Sweet dreams all... and a big shout out to Helen and Chris who tried to SKYPE me tonight, but had no sound!
TTFN
Thanks to the visitors Logan has had over the weekend... Paul and Sue, Charlotte and Dan and Michael and ???? (oooh I feel bad cause I cant remember her name... sorry pretty girl), and today we were graced with the presence of Brigitte and Manda (who took me for a drink) he he he.
Logan still full of sh## today. They reduced his feeds during the day and cut them entirely at 10pm. They feel he is expending more energy going to the bathroom getting rid of the food than he is having it. They will discuss with us the other option tomorrow, being a TPN (something, something, nutrition).
Logan is snoring quietly as I type this (something unusual for him) and he has begun to have a raspy cough. Will probably have a chest xray in the morning.
He has developed a viscous red rash on his hands and feet which may be Graft vs host. It is early but we will see what the team says tomorrow. He says it burns so I have been rubbing cream on it. He is sleeping with his blanket across his bed rather than down to leave his feet free.
Logan managed to drink 4 cups of water today... YAY!
Evan with my brother watching the rugby tonight... I said he could stay there and come back in the morning... but Logan said no, he wanted him back here in case I needed him, (shock horror) so Evan agreed and said he would see us bright and early in the morning.
Anyhow, this is suppose to be brief. I have photos but too tired to post them. Maybe tomorrow...
Sweet dreams all... and a big shout out to Helen and Chris who tried to SKYPE me tonight, but had no sound!
TTFN
Saturday, October 15, 2011
Transplant Day +5 - Morning Edition
Think I will rename Logan Rumpelstiltskin... cause all he does now is sleep. Well actually, more to the truth, he has turned by the clock 16 years... he is either pooping, sleeping, or being bottle fed! And yes I did say bottle (tho he will probably kill me for this later). They give him a fresh 'bottle' every four hours that attaches to his nasal tubey thingy... it's straight from the fridge, and cold, but he gets around 80mls and hour now, of high protein food.
Last night was somewhat messy for him and I, in a routine sort of way... Every two hours, almost like clockwork, his stomach cramped and he had to go to the bathroom. This now requires the unplugging of four different machines... three from the machines themselves, and one from the wall (the morphine). As the boy is usually in a hurry to get to his destination, a plan was hatched to ensure speed. The machines moved to beside my bed, and at Logan's cue I was to jump up and assist him in the unplugging, then when he returned, I was to reattach him. Neither of us allowed for the fact that I sleep extremely deeply... (it was how I trained my babes to sleep thru the night so young... just didnt hear them). Anyhow, the first time he woke, he couldn't rouse me, but luckily managed on his own... The second time, he yelled at me, and I left out of bed. Unfortunately, I also was having difficulty staying awake whilst waiting for him, so sometimes he got stuck behind the heavy door bathroom trying to wake me up to let him out again. But, in true Waikato style, we managed to get through to dawn... At about 7.30am, I text Evan and asked him to come up and take over, as I was exhausted and he relied 'great to hear', which I took to mean, that he was glad that I was finally letting him help. What I didn't know, was that he was responding to another text, then promptly went back to sleep! At 8am, apparently, he woke and checked his phone, discovering the actual text, and high tailed it up here. I didn't even know he was here till 9.15 when Logan woke for his scheduled pitstop.
Back to Logan... he still has a fever, which they are treating with high dose antibiotics and and panadol... his treats it with sleep. His adrenal gland is not coping with all the stress and is going into withdrawl again as they try to wean him from the steroids, which is in turn dropping his blood pressure to scary depths. It was something over 29 this morning... AHHHHHHHH!!!!! more fluids! Anyhow they have again increased his steroid dose, but this in itself is dangerous as having steroids increases the chance of developing a fungal infection that he would have no ability to fight... They are giving him antifungal drugs and crossing fingers and toes.
There is to be a conference to be held in Auckland shortly called S.I.O.P.. which means Congress of the International Society of Paediatric Oncology... (think they dont know how acronyms work)... where everyone who is anyone in oncology comes for conference lectures and discussions... The children and parents on our ward are making the centre pieces, which are little craft critters (bees, butterflies, bugs, and flowers etc), so I am in my element... Logan is too tired and Charlee made a couple of things then was bored, so I am getting into it... beats spending my spare time reading or on the computer.
Oh and lastly... I have rigged up a SKYPE. We have access to it as long as we are in the hospital room, thanks to Canteen (please give generously). So just look up my name and I will add you as a friend, then we can chat... and that goes for Logan's friends too. But you will have to use my name. If you to want to SKYPE, just text first, in case chaos beats you to it.
love and hugs to all
Tracy
Last night was somewhat messy for him and I, in a routine sort of way... Every two hours, almost like clockwork, his stomach cramped and he had to go to the bathroom. This now requires the unplugging of four different machines... three from the machines themselves, and one from the wall (the morphine). As the boy is usually in a hurry to get to his destination, a plan was hatched to ensure speed. The machines moved to beside my bed, and at Logan's cue I was to jump up and assist him in the unplugging, then when he returned, I was to reattach him. Neither of us allowed for the fact that I sleep extremely deeply... (it was how I trained my babes to sleep thru the night so young... just didnt hear them). Anyhow, the first time he woke, he couldn't rouse me, but luckily managed on his own... The second time, he yelled at me, and I left out of bed. Unfortunately, I also was having difficulty staying awake whilst waiting for him, so sometimes he got stuck behind the heavy door bathroom trying to wake me up to let him out again. But, in true Waikato style, we managed to get through to dawn... At about 7.30am, I text Evan and asked him to come up and take over, as I was exhausted and he relied 'great to hear', which I took to mean, that he was glad that I was finally letting him help. What I didn't know, was that he was responding to another text, then promptly went back to sleep! At 8am, apparently, he woke and checked his phone, discovering the actual text, and high tailed it up here. I didn't even know he was here till 9.15 when Logan woke for his scheduled pitstop.
Back to Logan... he still has a fever, which they are treating with high dose antibiotics and and panadol... his treats it with sleep. His adrenal gland is not coping with all the stress and is going into withdrawl again as they try to wean him from the steroids, which is in turn dropping his blood pressure to scary depths. It was something over 29 this morning... AHHHHHHHH!!!!! more fluids! Anyhow they have again increased his steroid dose, but this in itself is dangerous as having steroids increases the chance of developing a fungal infection that he would have no ability to fight... They are giving him antifungal drugs and crossing fingers and toes.
There is to be a conference to be held in Auckland shortly called S.I.O.P.. which means Congress of the International Society of Paediatric Oncology... (think they dont know how acronyms work)... where everyone who is anyone in oncology comes for conference lectures and discussions... The children and parents on our ward are making the centre pieces, which are little craft critters (bees, butterflies, bugs, and flowers etc), so I am in my element... Logan is too tired and Charlee made a couple of things then was bored, so I am getting into it... beats spending my spare time reading or on the computer.
Oh and lastly... I have rigged up a SKYPE. We have access to it as long as we are in the hospital room, thanks to Canteen (please give generously). So just look up my name and I will add you as a friend, then we can chat... and that goes for Logan's friends too. But you will have to use my name. If you to want to SKYPE, just text first, in case chaos beats you to it.
love and hugs to all
Tracy
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