Very brief and to the point post... I am so tired and not thinking straight... but know if I leave this post till the morning all will be forgotten!
- found out that Logan 'probably' has stage three gastrointestinal GVHD
- they are going to do a double biopsy under a general tomorrow afternoon to check for virus or GVHD
- Logan's weight this evening is down to 73.05kg
- Staff nurse has offered a nurse aide to help me care for Logan at night so I can sleep, but I am not keen to have a stranger tending to Logan's personal needs without me to ensure he feels safe and listened to... we are talking...
- Logan's skin continues to break down all over his body... we are rubbing creams into him 3 x daily to try to prevent open wounds
- Logan continues to vomit and have diarrhea... and is becoming increasingly tired and despondent... it's hard to keep his spirits up and I feel at any moment he is going to tell me to get ######.
Too tired to remember anything else... love to all
Tracy
Monday, October 31, 2011
Transplant Day +21 midday update
Just spoke with the doc... they are sending the gastro team to see Logan and assess him for surgery... a biopsy will confirm or deny (maybe)... the reality of the diagnosis... not sure that the literature supports this, but will get a few opinions.
Also... we are back in quarantine... which means visitors in gowns and gloves and us in gowns and gloves when we leave the room! Also nurses have to wear them which annoys Logan as they rustle loudly and wake him from his short, but necessary, naps! The quarantine has been put in place until they can definitely rule out any viral bugs that may be causing Logan's never ending nightmare with the toilet!
On a good note... Logan and I are changing tact, and are making a list of things that can be used as distraction techniques... a positive attitude must go on...
And Logan ended up sleeping for a little over two hours! yay!
love
Tracy
Transplant Day +21
Three weeks ago today... my boy received his sister's bone marrow... We kinda knew things would be hard... but oh dear... we didn't account for the exhaustion...
Thanks to our amazing nurse, Carl, I was able to have 3 hours sleep last night whilst he sat with Logan... who got basically no sleep. Logan, with support from Carl and I, spent all night with stomach cramps, passing blood, pieces of his stomach and intestine lining, and vomiting. His weight is now down to 73.4kg and they are replacing 4hrly, what his output was for the previous four hours. During the night, Carl gave him platelets to try to slow the bleeding, but this can also cause problems for his VOD as we don't want the veins in his liver to clot more than they already have.
As usual, I text Evan this morning when I felt I needed to put my head down again... He arrived quickly, as usual, then his phone went off with an alarm, and we both realised he has a conference today... so back for a shower. Evan discovered that his conference doesn't start till 10am, so he has popped back here for a short while, making me a coffee and toast... such a sweety!
Big hugs to Dan and Charlee who visited Logan on Saturday arvo fresh from the Armageddon expo, bringing him a goody bag which contained signed posters, badges, a frisbee, and other paraphernalia... They even got a large dedicated and autographed photo (which they didn't have to pay for) from the voice of Bumblebee. Apparently the guy was really nice when he heard it was for Logan. Cousin Chloe was coming to visit on Sunday, but Logan was too exhausted to entertain, he said, so she is hoping to come back today instead.
Speaking of Logan... LOL... the significance of his having one to one nursing is only just coming home to us... we assumed it was because they were low on patients, but in actual fact it is due to his high status as a patient. We also discovered that they are only putting senior nurses with him... not sure how they qualify for that as their ages tend to differ... vary... not sure which word to use!
I imagine, they have also put the words 'difficult parents' on Logan's folder. LOL. But I am passed caring... Every thought we have goes into Logan and Brad and Charlee and how we can make sure we are meeting all of their needs... This tends to make us (me) a little blunt at times, and a little pointed, but I will issue an all encompassing apology later...
Opps... sorry about dashing off like that... just spoke with the docs. Logan is not responding to the steroids as they had hoped he would. They are going to talk with the transplant team about doing a bowel biopsy to confirm the diagnosis. If it is not GVHD, then they need to find out exactly what it is and fix it.... fast!
The doc said, at this stage they are not sure it they are dealing with a blip on the screen, which will last 3 days, or a blip that will last 30 days... We plan to spend Christmas in our own house, so they had better get their act together me thinks!
The boy has now been sleeping an hour and 4 minutes... a small miracle... his Dad just left for his conference and kissed him on the cheek and he didn't even budge.
May I send out a request... Logan's favourite movie is 'RENT' which is about people facing their own demons at the turn of the 21st century. If anyone can find a copy and buy, hire, or steal it... (just kidding), I would be very grateful... Logan gains strength from it... I doubt it is watched very much so we might be able to hire it for a couple of weeks. Hillcrest Video has it I think...
Have also just discovered that my big boy (Brad) has been basically living alone, as Charlee spends most of her time with Dan. If any of you have spare places at your dinner table, or time to stop by for a coffee and a play on the playstation, please help a Mum to reach out to her son... We are stretched too thin... I miss them both terribly, and Brad refuses to read this blog... he finds it too depressing...
On a positive note (so there Brad), Logan has now been asleep for 1 hour and 12 minutes! A newish record!
Just got Logan's bloods from our nurse Sabrina...
Hb 127 (yay)
platelets 22 (will need another transfusion due to blood being passed)
White cells 3.43 (yay)
Neutraphils 2.54 (yay)
Bilirubin 46 (boo - hopefully this is due to the diarrhea)
I am going to ring a friend of mine who is a Gastroenterologist (yes I mean you), and ask about this gastrointestinal GVHD and the implications of a biopsy... knowledge is power!
Logan has now been sleeping for 1 hour and 41 minutes.... yay....
Send 'solidifying' prayers to my boy...
love and hugs
Tracy
Thanks to our amazing nurse, Carl, I was able to have 3 hours sleep last night whilst he sat with Logan... who got basically no sleep. Logan, with support from Carl and I, spent all night with stomach cramps, passing blood, pieces of his stomach and intestine lining, and vomiting. His weight is now down to 73.4kg and they are replacing 4hrly, what his output was for the previous four hours. During the night, Carl gave him platelets to try to slow the bleeding, but this can also cause problems for his VOD as we don't want the veins in his liver to clot more than they already have.
As usual, I text Evan this morning when I felt I needed to put my head down again... He arrived quickly, as usual, then his phone went off with an alarm, and we both realised he has a conference today... so back for a shower. Evan discovered that his conference doesn't start till 10am, so he has popped back here for a short while, making me a coffee and toast... such a sweety!
Big hugs to Dan and Charlee who visited Logan on Saturday arvo fresh from the Armageddon expo, bringing him a goody bag which contained signed posters, badges, a frisbee, and other paraphernalia... They even got a large dedicated and autographed photo (which they didn't have to pay for) from the voice of Bumblebee. Apparently the guy was really nice when he heard it was for Logan. Cousin Chloe was coming to visit on Sunday, but Logan was too exhausted to entertain, he said, so she is hoping to come back today instead.
Speaking of Logan... LOL... the significance of his having one to one nursing is only just coming home to us... we assumed it was because they were low on patients, but in actual fact it is due to his high status as a patient. We also discovered that they are only putting senior nurses with him... not sure how they qualify for that as their ages tend to differ... vary... not sure which word to use!
I imagine, they have also put the words 'difficult parents' on Logan's folder. LOL. But I am passed caring... Every thought we have goes into Logan and Brad and Charlee and how we can make sure we are meeting all of their needs... This tends to make us (me) a little blunt at times, and a little pointed, but I will issue an all encompassing apology later...
Opps... sorry about dashing off like that... just spoke with the docs. Logan is not responding to the steroids as they had hoped he would. They are going to talk with the transplant team about doing a bowel biopsy to confirm the diagnosis. If it is not GVHD, then they need to find out exactly what it is and fix it.... fast!
The doc said, at this stage they are not sure it they are dealing with a blip on the screen, which will last 3 days, or a blip that will last 30 days... We plan to spend Christmas in our own house, so they had better get their act together me thinks!
The boy has now been sleeping an hour and 4 minutes... a small miracle... his Dad just left for his conference and kissed him on the cheek and he didn't even budge.
May I send out a request... Logan's favourite movie is 'RENT' which is about people facing their own demons at the turn of the 21st century. If anyone can find a copy and buy, hire, or steal it... (just kidding), I would be very grateful... Logan gains strength from it... I doubt it is watched very much so we might be able to hire it for a couple of weeks. Hillcrest Video has it I think...
Have also just discovered that my big boy (Brad) has been basically living alone, as Charlee spends most of her time with Dan. If any of you have spare places at your dinner table, or time to stop by for a coffee and a play on the playstation, please help a Mum to reach out to her son... We are stretched too thin... I miss them both terribly, and Brad refuses to read this blog... he finds it too depressing...
On a positive note (so there Brad), Logan has now been asleep for 1 hour and 12 minutes! A newish record!
Just got Logan's bloods from our nurse Sabrina...
Hb 127 (yay)
platelets 22 (will need another transfusion due to blood being passed)
White cells 3.43 (yay)
Neutraphils 2.54 (yay)
Bilirubin 46 (boo - hopefully this is due to the diarrhea)
I am going to ring a friend of mine who is a Gastroenterologist (yes I mean you), and ask about this gastrointestinal GVHD and the implications of a biopsy... knowledge is power!
Logan has now been sleeping for 1 hour and 41 minutes.... yay....
Send 'solidifying' prayers to my boy...
love and hugs
Tracy
Sunday, October 30, 2011
Transplant Day +20 - the hard yards continue
Seems things may get harder before they get easier....
Todays stats:
white cells 3.72
neutraphils 3.0
platelets 39
Bilirubin 51 (due to dehydration we hope... it needs to be less than 24)
For a short period yesterday, Logan appeared to rally and settle... but it was all just an illusion.... designed to lull us into a sense of false security. We spent the night (the whole night) bouncing between bed and bathroom with me sometimes being unable to wake when he needed me and the nurse taking over. It definitely appears to be gastrointestinal GvHD. The literature is not to positive, but like everything it comes in differing scales. Our evening nurse last night (who I think is part angel), explained it's variables to me and the possibility of it lasting months with the time between bouts becoming longer and the length of each bout becoming shorter. No-one explained this to us, so it was important for us to know. The steroids he is on 'may' be decreasing the cramps, but it is hard to tell. He is taking much higher doses than recommended, of buscapan. But it's all that is helping. The morphine is useless.
Since yesterday morning, Logan has had a nurse 1-1. It has been especially excellent when trying to co-ordinate his pain, and meds, and bathroom visits and bed changes. Sometimes it even takes three of us! But just like a pregnancy, which can also be an awful experience for some, this is time limited (hopefully) and we will endure. Evan and I spend a lot of time thinking of ways to cheer up Logan... he has reached an all time low, and being the eternal optimist that he is, I think it is an emotion he is finding difficult to come to terms with.
Speaking of Evan, he was called on deck just after 6am, when I reached my limit. It's great that Ronald McDonald house is so close... he can be here in minutes. In the 2 1/2 hours that I slept after this, Logan visited the bathroom 6 times and each time always lasts at least 20 minutes... so you can imagine his exhaustion.
I have been awake since half 8(ish), and it's now 9.50 and Logan continues to sleep... it's his longest nap in ages. He poor bowel, apparently, has lost its lining, and it ability to do it's rhythmic squeezy job properly. This has resulted in Logan's bowel turning into a water slide... actually, cancel that picture... it's not pretty.
Oops... that will teach me, he just woke again and we did another rush to the bathroom.
I'll leave you with these pics...
Hugs to all, and to all.... ow! brain hurting... cant think of anything interesting to write....
TTFN
Tracy
Todays stats:
white cells 3.72
neutraphils 3.0
platelets 39
Bilirubin 51 (due to dehydration we hope... it needs to be less than 24)
For a short period yesterday, Logan appeared to rally and settle... but it was all just an illusion.... designed to lull us into a sense of false security. We spent the night (the whole night) bouncing between bed and bathroom with me sometimes being unable to wake when he needed me and the nurse taking over. It definitely appears to be gastrointestinal GvHD. The literature is not to positive, but like everything it comes in differing scales. Our evening nurse last night (who I think is part angel), explained it's variables to me and the possibility of it lasting months with the time between bouts becoming longer and the length of each bout becoming shorter. No-one explained this to us, so it was important for us to know. The steroids he is on 'may' be decreasing the cramps, but it is hard to tell. He is taking much higher doses than recommended, of buscapan. But it's all that is helping. The morphine is useless.
Since yesterday morning, Logan has had a nurse 1-1. It has been especially excellent when trying to co-ordinate his pain, and meds, and bathroom visits and bed changes. Sometimes it even takes three of us! But just like a pregnancy, which can also be an awful experience for some, this is time limited (hopefully) and we will endure. Evan and I spend a lot of time thinking of ways to cheer up Logan... he has reached an all time low, and being the eternal optimist that he is, I think it is an emotion he is finding difficult to come to terms with.
Speaking of Evan, he was called on deck just after 6am, when I reached my limit. It's great that Ronald McDonald house is so close... he can be here in minutes. In the 2 1/2 hours that I slept after this, Logan visited the bathroom 6 times and each time always lasts at least 20 minutes... so you can imagine his exhaustion.
I have been awake since half 8(ish), and it's now 9.50 and Logan continues to sleep... it's his longest nap in ages. He poor bowel, apparently, has lost its lining, and it ability to do it's rhythmic squeezy job properly. This has resulted in Logan's bowel turning into a water slide... actually, cancel that picture... it's not pretty.
Oops... that will teach me, he just woke again and we did another rush to the bathroom.
I'll leave you with these pics...
 |
| The CanTeen quilt that Charlotte has been given made up of CanTeen scarves creates a colourful impact in Logan's room and reminds him of his sisters love when things are crap! |
 |
| Logan's whole body has begun to peel. This picture doesn't show, but his whole body is going quite brown and then peeling. (And I do mean his whole body). |
 |
| I know Logan... you hate me posting photo's of you sleeping... but this one is soooo cute! Humour me! |
TTFN
Tracy
Saturday, October 29, 2011
Transplant Day +19 - the hard yards
Sleep... who needs it...
Logan and I are both running on empty. The poor boy was up all night as his body continued to elimate fluid from all exits! Nothing seemed to help the pain and by 6am, the reinforcements (Evan) were called in to lend support to a very grim day. Logan's weight is down to 73.95kg this morning, which under normal circumstances, one would be particularly pleased about, but unfortunately we are unable to keep anything into the boy. The doc's have now changed all his med to IV, thank god. We requested a doc last night to change his pain meds to IV but no-one came... I explained my displeasure about that this morning... as I would!
Anyhoo, a visit from the consultant (another one that we hadn't met before), Stephen, brought fresh information. Logan's bloods that were taken during the night have come back fine. His temp has gone down, and so has his blood pressure. It took quite some prodding but we eventually discovered that they were planning to give him high dose steroids as they felt he possibly has gastrointestinal Graft versus Host Disease. This was a bit of a shock to Evan and I who had not realised that this was one of the possibilities. Sometimes up here I feel like a mushroom... kept in the dark and fed bullshit! But moving on... They gave Logan a rather large dose of these steroids mid-morning and his cramps seem to be abating. We have also had no more vomiting (TOUCH WOOD!!!!!).
Logan's nurse today has Logan all to herself... a random occurrence! Which is probably just as well as having all his meds now on IV takes quite a bit of time to administer. She has been cracking Evan and I up though. She appears to be every bit as OCD as me... she is lining up his drips machines and straightening his wires... we are giggling because just a few minutes earlier I was getting in a flap because the stripes on Logan's bed cover weren't straight! Back to the nurse... she came in a little while ago with a couple of pills. Several times we tried to tell her that pills were not going to be a happening thing and that they could all be chartered IV. She informed us of his blood pressure pills, that the doc the other day said he wasn't even on! Great communication up here! She left one pill with us, taking the other one away to be charted IV. Wishful thinking on her part me thinks.
Once again, as I sign off, the boys sleeps... to describe what he actually went through last night would be too depressing... just picture your worst every hangover mixed with your worst ever tummy bug and you should get the picture...
Oh... last thing... even though his platelets are 19, they are transfusing him today. Unfortunately he has been loosing blood during his bathroom visits as well, so they are hoping to clot whatever it is that he has ripped and get it healed. Fingers crossed!
Hugs to all, and to all, a happy weekend!
Tracy, Evan and the Logster!
EDIT FROM CHARLOTTE:
Dan and I came and visited around dinner time too! And we bought Logan some signatures from Armageddon (an entertainment expo in Auckland) and a big Battlefield 3 poster to decorate his wall.
The lovely people from Child Cancer Foundation gave Logan a bead for me. He presented this to me during our visit. It is a lovely blue and green one. I'll post a pic of all my beads on my bracelet when I get home :)
Love to all,
Charlotte
Logan and I are both running on empty. The poor boy was up all night as his body continued to elimate fluid from all exits! Nothing seemed to help the pain and by 6am, the reinforcements (Evan) were called in to lend support to a very grim day. Logan's weight is down to 73.95kg this morning, which under normal circumstances, one would be particularly pleased about, but unfortunately we are unable to keep anything into the boy. The doc's have now changed all his med to IV, thank god. We requested a doc last night to change his pain meds to IV but no-one came... I explained my displeasure about that this morning... as I would!
Anyhoo, a visit from the consultant (another one that we hadn't met before), Stephen, brought fresh information. Logan's bloods that were taken during the night have come back fine. His temp has gone down, and so has his blood pressure. It took quite some prodding but we eventually discovered that they were planning to give him high dose steroids as they felt he possibly has gastrointestinal Graft versus Host Disease. This was a bit of a shock to Evan and I who had not realised that this was one of the possibilities. Sometimes up here I feel like a mushroom... kept in the dark and fed bullshit! But moving on... They gave Logan a rather large dose of these steroids mid-morning and his cramps seem to be abating. We have also had no more vomiting (TOUCH WOOD!!!!!).
Logan's nurse today has Logan all to herself... a random occurrence! Which is probably just as well as having all his meds now on IV takes quite a bit of time to administer. She has been cracking Evan and I up though. She appears to be every bit as OCD as me... she is lining up his drips machines and straightening his wires... we are giggling because just a few minutes earlier I was getting in a flap because the stripes on Logan's bed cover weren't straight! Back to the nurse... she came in a little while ago with a couple of pills. Several times we tried to tell her that pills were not going to be a happening thing and that they could all be chartered IV. She informed us of his blood pressure pills, that the doc the other day said he wasn't even on! Great communication up here! She left one pill with us, taking the other one away to be charted IV. Wishful thinking on her part me thinks.
Once again, as I sign off, the boys sleeps... to describe what he actually went through last night would be too depressing... just picture your worst every hangover mixed with your worst ever tummy bug and you should get the picture...
Oh... last thing... even though his platelets are 19, they are transfusing him today. Unfortunately he has been loosing blood during his bathroom visits as well, so they are hoping to clot whatever it is that he has ripped and get it healed. Fingers crossed!
Hugs to all, and to all, a happy weekend!
Tracy, Evan and the Logster!
EDIT FROM CHARLOTTE:
Dan and I came and visited around dinner time too! And we bought Logan some signatures from Armageddon (an entertainment expo in Auckland) and a big Battlefield 3 poster to decorate his wall.
The lovely people from Child Cancer Foundation gave Logan a bead for me. He presented this to me during our visit. It is a lovely blue and green one. I'll post a pic of all my beads on my bracelet when I get home :)
Love to all,
Charlotte
Friday, October 28, 2011
Transplant Day +18 - Evening Edition
I forgot to touch wood! That will teach me.
Minutes after the last post things changed again... Logan's stomach cramps got much worse. Whilst dealing with them in the usual way in the bathroom, he suddenly vomited (copiously) and unfortunately threw up his nasal gastric tube... do not keep reading this paragraph if squeemish... On walking into the bathroom at his yelp, I discovered him vomiting with half the tube out his nose still, and the other end out his mouth... he was choking on it... I did what all good mothers should do and PANICKED! Hitting the emergency button, brought staff running, but by the time they got there, Logan had efficiently removed the tube from his nose and threaded it out of his mouth... YUCK!
Squeemish people may continue to read now...
I have to say tho, Logan looks lovely without his nose tube, and his face has thinned down heaps... resembling the boy we knew a short time ago... wont be long till he's back to normal again... touch wood.
Anyhoo... it has gone from bad to worse this evening... his cramps and diarrhea have become worse again, so they have said water only... he was particularly pissed about this as he could probably eat without the tube in there. Then, at 8pm, they discovered he has a 38.3 temp... which is not good... and quite random as well, as he has neutraphils... so they are taking it again in an hour. I have sent Evan back to RMcD house as Logan needs to rest, and that requires lights out. I can but hope that Logan gets some sleep tonight... for both our sakes.
Charlee dropped by, but couldn't come in as she has a cold. She brought Logan her special quilt which she received from Canteen, which is made of Canteen scarves, and also the promised mail. It turned out, as I thought, to be from Meg, Nig, Dom and Jesse... They sent cool cards, drawings, chocolate and loads of humour... The envelope was covered in writing that made us smile... I could just picture Meg saying exactly what she had written... Thanks for the love guys...
Thanks for the SKYPE Yvonne and Paul... we love to chat... and thanks for understanding that Logan only had the energy to say hi and bye...
Well the doc has just been in again.. they are going to keep a close eye on Logan over night. They have stopped most of his meds that are given orally, and also the one they give him to make him pee, as they don't want him to dehydrate... One day at a time me thinks.
Sleep well my friends...
We hope to...
Tracy and the Logster!
Minutes after the last post things changed again... Logan's stomach cramps got much worse. Whilst dealing with them in the usual way in the bathroom, he suddenly vomited (copiously) and unfortunately threw up his nasal gastric tube... do not keep reading this paragraph if squeemish... On walking into the bathroom at his yelp, I discovered him vomiting with half the tube out his nose still, and the other end out his mouth... he was choking on it... I did what all good mothers should do and PANICKED! Hitting the emergency button, brought staff running, but by the time they got there, Logan had efficiently removed the tube from his nose and threaded it out of his mouth... YUCK!
Squeemish people may continue to read now...
I have to say tho, Logan looks lovely without his nose tube, and his face has thinned down heaps... resembling the boy we knew a short time ago... wont be long till he's back to normal again... touch wood.
Anyhoo... it has gone from bad to worse this evening... his cramps and diarrhea have become worse again, so they have said water only... he was particularly pissed about this as he could probably eat without the tube in there. Then, at 8pm, they discovered he has a 38.3 temp... which is not good... and quite random as well, as he has neutraphils... so they are taking it again in an hour. I have sent Evan back to RMcD house as Logan needs to rest, and that requires lights out. I can but hope that Logan gets some sleep tonight... for both our sakes.
Charlee dropped by, but couldn't come in as she has a cold. She brought Logan her special quilt which she received from Canteen, which is made of Canteen scarves, and also the promised mail. It turned out, as I thought, to be from Meg, Nig, Dom and Jesse... They sent cool cards, drawings, chocolate and loads of humour... The envelope was covered in writing that made us smile... I could just picture Meg saying exactly what she had written... Thanks for the love guys...
Thanks for the SKYPE Yvonne and Paul... we love to chat... and thanks for understanding that Logan only had the energy to say hi and bye...
Well the doc has just been in again.. they are going to keep a close eye on Logan over night. They have stopped most of his meds that are given orally, and also the one they give him to make him pee, as they don't want him to dehydrate... One day at a time me thinks.
Sleep well my friends...
We hope to...
Tracy and the Logster!
Transplant Day +18
Hey all,
What I forgot to mention yesterday was that we were encouraging Logan to begin eating, which he did in very small amounts. He unfortunately now has little to no sense of taste and everything feels wrong in his mouth, let alone going down his throat when there is already a tube going down there.
During the night, he was disappointed to discover that his diarrhea has returned, though not with the same intensity. He has the stomach cramps though which by mid-day were beginning to get the better of him. A sane person can only handle pain for so long. We are waiting to see the pain team.
There was talk of removing his nasal tube to see how he goes with the eating and stuff, and with the hope that it will get rid of the runs, but he is still on so many meds that they decided not to.
Currently I sit on Logan's bed whilst he slumbers in the lazy boy chair, that I usually occupy... cheeky bugger!
We have just been told that due to a group of foreign docs and nurses touring our ward this evening, they would like us to stay in our rooms between 5pm and 7pm. I said that sounded lovely, but when were we suppose to cook our dinner, or were they buying us in pizza... they said they would get back to us on that! Hmmmm... you can always tell when practical people dont get to make the decisions... not to mention that it's visiting hours then!
Oh... and as usual... Logan's bloods for the day...
White cells 3.25
Neutraphils 2.39
Bilirubin (liver function) 28 (up slightly on yesterday - normal is less than 24)
In himself, Logan is mostly well. He doesn't take kindly to the invalid thing and I suppose on could tentatively suggest he is becoming a little despondent (though he would adamantly deny this). His skin continues to do it's wrinkly and peely thing, with him removing large chunks from his hands daily. As he is unable to use soaps and moisturisers, he is having to shower with aqueous cream which he hates! Our hearts go out to excema sufferers who shower with it daily... yuck!
Charlotte also tells us that Logan has a package at home for him with writing all over the envelope... She didn't say who it was from, but Logan and I have our suspicions! (me thinks meggles had something to do with it but time will tell). Charlee unfortunately has a cold, but she is dropping the largish envelope to us sometime today. She has a job interview in Auckland, a masquerade ball, and some other thing and is going to stay with Baked Bean uncle Dean and Chocolate Bikki auntie Nikki for the weekend!
Well, Logan is refusing to wake to contribute anything exciting, and Evan is still at work, and it's and hour and a half till the foreigners arrive so I will have to sit on Logan's vibrating, inflating bed, and read my book.... what more could a little girl want!
I'll leave you with some photo's of the boy's hands... in all their glory!
Love to ya all,
Keep smiling
Tracy
What I forgot to mention yesterday was that we were encouraging Logan to begin eating, which he did in very small amounts. He unfortunately now has little to no sense of taste and everything feels wrong in his mouth, let alone going down his throat when there is already a tube going down there.
During the night, he was disappointed to discover that his diarrhea has returned, though not with the same intensity. He has the stomach cramps though which by mid-day were beginning to get the better of him. A sane person can only handle pain for so long. We are waiting to see the pain team.
There was talk of removing his nasal tube to see how he goes with the eating and stuff, and with the hope that it will get rid of the runs, but he is still on so many meds that they decided not to.
Currently I sit on Logan's bed whilst he slumbers in the lazy boy chair, that I usually occupy... cheeky bugger!
We have just been told that due to a group of foreign docs and nurses touring our ward this evening, they would like us to stay in our rooms between 5pm and 7pm. I said that sounded lovely, but when were we suppose to cook our dinner, or were they buying us in pizza... they said they would get back to us on that! Hmmmm... you can always tell when practical people dont get to make the decisions... not to mention that it's visiting hours then!
Oh... and as usual... Logan's bloods for the day...
White cells 3.25
Neutraphils 2.39
Bilirubin (liver function) 28 (up slightly on yesterday - normal is less than 24)
In himself, Logan is mostly well. He doesn't take kindly to the invalid thing and I suppose on could tentatively suggest he is becoming a little despondent (though he would adamantly deny this). His skin continues to do it's wrinkly and peely thing, with him removing large chunks from his hands daily. As he is unable to use soaps and moisturisers, he is having to shower with aqueous cream which he hates! Our hearts go out to excema sufferers who shower with it daily... yuck!
Charlotte also tells us that Logan has a package at home for him with writing all over the envelope... She didn't say who it was from, but Logan and I have our suspicions! (me thinks meggles had something to do with it but time will tell). Charlee unfortunately has a cold, but she is dropping the largish envelope to us sometime today. She has a job interview in Auckland, a masquerade ball, and some other thing and is going to stay with Baked Bean uncle Dean and Chocolate Bikki auntie Nikki for the weekend!
Well, Logan is refusing to wake to contribute anything exciting, and Evan is still at work, and it's and hour and a half till the foreigners arrive so I will have to sit on Logan's vibrating, inflating bed, and read my book.... what more could a little girl want!
I'll leave you with some photo's of the boy's hands... in all their glory!
Love to ya all,
Keep smiling
Tracy
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| Evan cuts away the dried, parchment like skin that is driving Logan nuts! |
Thursday, October 27, 2011
Transplant Day +17
hmmmm... same old, same old...
Yay! Logan is doing well. Weight down, blood pressure down, pulse rate down, bilirubin levels down (now normal), white cells up to 3.18, and neutraphils up to 2.97.
A chain reaction is beginning...
They are giving him less insulin as his sugar levels are balancing out, and they are balancing out because they are reducing his steroids, which are being reduced as his blood pressure is going down, which is the result of his loosing lots of excess fluid, which is the result of the medicine now working (which they are also reducing)... in other words... HOUSTON... WE HAVE IMPROVEMENT!!!!
Logan's hands continue to peel fiercely! They are quite scary to the uninitiated.
We had a lovely surprise today. Our Hamilton oncology god Dr Michael... came and visited Logan on the ward... It was so good to see him. He cracked us up (as usual). Didn't stay for too long, but he brought a taste of home with him... He hadn't been up here for several years and was impressed with the facilities.
I told him of my latest locking of horns with the staff, which had him in stitches as he knows me so well. Having said that, I suppose I will have to share. Cutting a very long story short, I somehow managed to get Logan's insulin confiscated. They seemed to deem me (suddenly) incapable of following their instructions when it came to drawing up the two needles and administering it to Logan. I made my dissatisfaction with the whole affair very clear (in a two year old sort of way), and sulked for the entire day. There was no justification for this, and no explanation for why I have been allowed to carry and administer it since May of this year... go figure! Personally, I think the Aucklanders got their knickers in a twist, but what do I know?
Anyhow, as I said, Michael thought it was hilarious, as he knows that to come between me and my boy is a bad idea... Just the picture in his head, had him in hysterics.
But getting back to Logan... he had a special mattress delivered today... just as he is becoming more mobile... it is about six inches thick and has a motor attached at the end of the bed that blows up tubes within the mattress. It has a four part cycle, each ten minutes apart... firstly, it blows up all the cylinders, secondly it lets down cylinders 1, 3, 5, 7, 9, etc, thirdly it blows them up again, fourthly, it lets down cylinders 2, 4, 6, 8, etc, then the cycle starts again. It is designed to eliminate the pressure points and stop the bruising that is beginning on his body.
We had a lovely visit from Emma again today as well, which Logan slept all the way through... (such a good host). And we had a visit from Child Cancer Society. They did something really kind for us. Our phone bill has been getting bigger and bigger, to the point of ridiculous. Unfortunately, we have a plan with Telstra Clear, which suited us before, but times have changed and they refused to change our mobile plan to suit our current situation. Consequently, i have a very small amount of text which I go through in the blink of an eye, and am then charged 20 cents per text! It's archaic! Anyhow... Back to the good news... CCS, gave me a 2degress phone and $20 credit which will last ages! CCS does so much to try and support their families to the best of their abilities. I wont post the number here, but I will send it out to you when I get round to it. I will be using BOTH phones so you can text me on either. The
A big thanks to Nell and Steven who sent us a postcard from their holiday destination, which we just received today, and big hugs to Auntie Beth who sent Logan a card today... Love to you all.
Well, we are smiling, and happy, and hope you are too...
Hugs
Tracy
Yay! Logan is doing well. Weight down, blood pressure down, pulse rate down, bilirubin levels down (now normal), white cells up to 3.18, and neutraphils up to 2.97.
A chain reaction is beginning...
They are giving him less insulin as his sugar levels are balancing out, and they are balancing out because they are reducing his steroids, which are being reduced as his blood pressure is going down, which is the result of his loosing lots of excess fluid, which is the result of the medicine now working (which they are also reducing)... in other words... HOUSTON... WE HAVE IMPROVEMENT!!!!
Logan's hands continue to peel fiercely! They are quite scary to the uninitiated.
We had a lovely surprise today. Our Hamilton oncology god Dr Michael... came and visited Logan on the ward... It was so good to see him. He cracked us up (as usual). Didn't stay for too long, but he brought a taste of home with him... He hadn't been up here for several years and was impressed with the facilities.
I told him of my latest locking of horns with the staff, which had him in stitches as he knows me so well. Having said that, I suppose I will have to share. Cutting a very long story short, I somehow managed to get Logan's insulin confiscated. They seemed to deem me (suddenly) incapable of following their instructions when it came to drawing up the two needles and administering it to Logan. I made my dissatisfaction with the whole affair very clear (in a two year old sort of way), and sulked for the entire day. There was no justification for this, and no explanation for why I have been allowed to carry and administer it since May of this year... go figure! Personally, I think the Aucklanders got their knickers in a twist, but what do I know?
Anyhow, as I said, Michael thought it was hilarious, as he knows that to come between me and my boy is a bad idea... Just the picture in his head, had him in hysterics.
But getting back to Logan... he had a special mattress delivered today... just as he is becoming more mobile... it is about six inches thick and has a motor attached at the end of the bed that blows up tubes within the mattress. It has a four part cycle, each ten minutes apart... firstly, it blows up all the cylinders, secondly it lets down cylinders 1, 3, 5, 7, 9, etc, thirdly it blows them up again, fourthly, it lets down cylinders 2, 4, 6, 8, etc, then the cycle starts again. It is designed to eliminate the pressure points and stop the bruising that is beginning on his body.
We had a lovely visit from Emma again today as well, which Logan slept all the way through... (such a good host). And we had a visit from Child Cancer Society. They did something really kind for us. Our phone bill has been getting bigger and bigger, to the point of ridiculous. Unfortunately, we have a plan with Telstra Clear, which suited us before, but times have changed and they refused to change our mobile plan to suit our current situation. Consequently, i have a very small amount of text which I go through in the blink of an eye, and am then charged 20 cents per text! It's archaic! Anyhow... Back to the good news... CCS, gave me a 2degress phone and $20 credit which will last ages! CCS does so much to try and support their families to the best of their abilities. I wont post the number here, but I will send it out to you when I get round to it. I will be using BOTH phones so you can text me on either. The
A big thanks to Nell and Steven who sent us a postcard from their holiday destination, which we just received today, and big hugs to Auntie Beth who sent Logan a card today... Love to you all.
Well, we are smiling, and happy, and hope you are too...
Hugs
Tracy
Wednesday, October 26, 2011
Transplant Day +16
What a difference a day makes. Logan is definitely doing much better. He has walked to the bathroom unsupported today THREE times... which is huge on the scale things as he is only just beginning to get back his energy.
His bloods were improved today. His Hemoglobin is 78, platelets <10 (they gave another transfusion), white cells are up to 2.32 and neutraphils have launched up to 1.92... amazing. For those of you looking puzzled... all these counts are what keep Logan alive... Charlotte's bone marrow is busy making these cells, but she's a big job mate... and the going is slow.
It's a fine balancing act for the white cells/neutraphils, as we don't want them too high... as they pose a danger to Logan's system. He is on Cyclosporan which is an immune suppressant. Whilst this does keep him and Charlee from fighting an internal war, it also leaves him vulnerable to infections... particularly bugs he gives himself (like skin staf), and viral infections (which they can't protect him from or give him medicine for).
His diabetes is becoming controlled with the twice daily shots of insulin and it is hoped that he will be able to resume normal function once he is off all of the drugs... but not a certainty... not that we are coming to expect any certainties anymore.
In himself, Logan is doing well. He was up just after six this morning then back to sleep at 7.30am, woke again at 10.30am and after visiting the bathroom walked to the lazyboy where he sat for a couple of hours and surfed the web. Another short amble and a nap proceeded a visit from his uncle Dean.
All in all a great day... ooh and he lost another kilo! YAY!!!
I'll leave you with another couple of pics...
take care everyone :)
Tracy
His bloods were improved today. His Hemoglobin is 78, platelets <10 (they gave another transfusion), white cells are up to 2.32 and neutraphils have launched up to 1.92... amazing. For those of you looking puzzled... all these counts are what keep Logan alive... Charlotte's bone marrow is busy making these cells, but she's a big job mate... and the going is slow.
It's a fine balancing act for the white cells/neutraphils, as we don't want them too high... as they pose a danger to Logan's system. He is on Cyclosporan which is an immune suppressant. Whilst this does keep him and Charlee from fighting an internal war, it also leaves him vulnerable to infections... particularly bugs he gives himself (like skin staf), and viral infections (which they can't protect him from or give him medicine for).
His diabetes is becoming controlled with the twice daily shots of insulin and it is hoped that he will be able to resume normal function once he is off all of the drugs... but not a certainty... not that we are coming to expect any certainties anymore.
In himself, Logan is doing well. He was up just after six this morning then back to sleep at 7.30am, woke again at 10.30am and after visiting the bathroom walked to the lazyboy where he sat for a couple of hours and surfed the web. Another short amble and a nap proceeded a visit from his uncle Dean.
All in all a great day... ooh and he lost another kilo! YAY!!!
I'll leave you with another couple of pics...
take care everyone :)
Tracy
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| The skin on Logan's hands is literally separating from the under layers... It is thick like parchment paper |
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| Logan's fingers are like cooked sausages left in the fridge overnight (Logan's words not mine) |
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| Large chunks of skin are hanging from his hand and Logan is just dying to pull them off! |
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| His ears have suffered the same damage... but it looks grosser cause its green and yellow!!!! |
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| Logan last night... he is slowly beginning to loose a bit of his fullness now that the fluid is dissapating |
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| The skin from the tip of one of Logan's fingers |
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| Logan having his sit up time today |
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| Logan's room, clean and tidy today |
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| Logan's wall of love |
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| Logan laid down to try and evade a photo... but uncle Dean wasn't to be put off! |
Tuesday, October 25, 2011
Transplant Day +15
Hey all,
Life is beginning to feel as though it is returning to normal (touching wood of course). The sun is shining outside. Evan went to work this morning. And Logan is feeling good. The doc, this morning, said that Logan's white cell count is up to 1.5, and his neutraphils are up to 0.93 as well as loosing 1cm around his girth and about a kilo in weight (fluid). They are happy. His diabetes, however, continues to confuse them, as he is no longer using the steroids that affect him, so they are unsure why his blood sugars are continuously high. We are having to give long and short acting insulin at the moment to help to keep him in check. His blood pressure is still rather high (due to the retention they think), so he is still on meds to help him pee, and blood pressure meds to assist with that. He takes potassium and magnesium and GCSF and panadol and tramadol and this and that and the other... as well as his bottle feed, which they have reduced to help with the fluid retention. He usually drinks at least 1 ltr per day anyways. But he just keeps on keeping on... case in point, he sleeps right now (2pm).
I hope my blog finds you and yours well... We look forward to seeing you all soon,
Take care
Tracy
Life is beginning to feel as though it is returning to normal (touching wood of course). The sun is shining outside. Evan went to work this morning. And Logan is feeling good. The doc, this morning, said that Logan's white cell count is up to 1.5, and his neutraphils are up to 0.93 as well as loosing 1cm around his girth and about a kilo in weight (fluid). They are happy. His diabetes, however, continues to confuse them, as he is no longer using the steroids that affect him, so they are unsure why his blood sugars are continuously high. We are having to give long and short acting insulin at the moment to help to keep him in check. His blood pressure is still rather high (due to the retention they think), so he is still on meds to help him pee, and blood pressure meds to assist with that. He takes potassium and magnesium and GCSF and panadol and tramadol and this and that and the other... as well as his bottle feed, which they have reduced to help with the fluid retention. He usually drinks at least 1 ltr per day anyways. But he just keeps on keeping on... case in point, he sleeps right now (2pm).
I hope my blog finds you and yours well... We look forward to seeing you all soon,
Take care
Tracy
Monday, October 24, 2011
Transplant Day +14 - Evening Edition
Evening all,
What a lovely warm day... sunshine and uneventfulness work wonders for me right now. Logan has had a fabulous day. He was able to get out of bed and very slowly walk to the armchair, where he sat for at least an hour. He SKYPE'd Charlee and Dan and heard all about the mess on the beaches at Papamoa. When he eventually got back to bed, he fell into an exhausted sleep.
Prior to this, Nell arrived for an afternoon visit. Her and I had a lovely couple of hours, having coffee, and going walkabout, whilst leaving Logan in Evan's capable hands. Nell also brought Evan and I some yummy steak and salad for dinner... you don't realise what you miss until you are offered it again!
On that note... when Rosie was up here, her and Logan (in his lucid moments), made lists of all the yummy foods that he plans to eat when this is all over... There appeared to be quite a large quantity!
Speaking of quantities, Logan has continued to gain weight, so they have reduced his 'bottle' feeds for the evening. His is drinking quite a bit on his own anyway. Looks like his evening sugar levels are high again, so more insulin. And unfortunately, the extra fluid is beginning to give Logan pressure points on his back and rear... so another mattress is being organised to help him till he is able to get up and about better. Till then, he has to move from side to side every four hours.
Anyhoo... enjoy the photos!
Tracy
What a lovely warm day... sunshine and uneventfulness work wonders for me right now. Logan has had a fabulous day. He was able to get out of bed and very slowly walk to the armchair, where he sat for at least an hour. He SKYPE'd Charlee and Dan and heard all about the mess on the beaches at Papamoa. When he eventually got back to bed, he fell into an exhausted sleep.
Prior to this, Nell arrived for an afternoon visit. Her and I had a lovely couple of hours, having coffee, and going walkabout, whilst leaving Logan in Evan's capable hands. Nell also brought Evan and I some yummy steak and salad for dinner... you don't realise what you miss until you are offered it again!
On that note... when Rosie was up here, her and Logan (in his lucid moments), made lists of all the yummy foods that he plans to eat when this is all over... There appeared to be quite a large quantity!
Speaking of quantities, Logan has continued to gain weight, so they have reduced his 'bottle' feeds for the evening. His is drinking quite a bit on his own anyway. Looks like his evening sugar levels are high again, so more insulin. And unfortunately, the extra fluid is beginning to give Logan pressure points on his back and rear... so another mattress is being organised to help him till he is able to get up and about better. Till then, he has to move from side to side every four hours.
Anyhoo... enjoy the photos!
Tracy
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| Nell and I woke Logan up when we got back... but Nell decided to leave before 4pm, because that was when the nurse wanted Logan to try to move to the chair... and he was tired! |
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| Logan on his maiden journey from his bed, playing on his borrowed Canteen laptop (thanks Canteen!) |
Transplant Day +14
Good new, good news, as Roscoe P. Coultraine would say (for you oldies)...
Logan is definitely feeling better today... and taking minute by minute, hour by hour, and day by day... this is fabulous on all three counts. But the two counts that matter most are his white counts. His white cells are up to 0.8 and his neutraphils are now up to 0.5! Huge news... ! Charlotte and Logan, so far, are managing to get along without too much of a bother :)
Today he was able to sit up all by himself, just pulling a little on the bed bars. He stood for the scales and even took a few shaky steps (well 2 to be honest). His bilirubin is down to 38 and his pain has lessened. His weight is a little heavier, but they didn't account for the fact that he would take to drinking so well again, so they are decreasing the fluids they give him today to compensate. His blood sugars were up last night and tonight, resulting in 6 units of fast acting insulin being given today. The doc is not sure why this is happening again as it is not due to the steroids, which have been reduced. She is not concerned at the moment, but realistically, if that's all he comes out of here with, that's ok!
Think his BP and pulse rate are still quite high, but his body is going through a lot of stress and has been poisoned several times over... so it's not really surprising. Though he has just gone down for a morning nap (11.20am), he has been awake and conversing all morning... huge improvements even on yesterday.
And earlier we had a call from Nell to say she's coming up so I'm in a good mood! Touch wood (and I do so several times a day), it's gonna be a great day. The docs have warned us that the road ahead is long... but for today... we are all just gonna smile!
hugs and love
Tracy
Logan is definitely feeling better today... and taking minute by minute, hour by hour, and day by day... this is fabulous on all three counts. But the two counts that matter most are his white counts. His white cells are up to 0.8 and his neutraphils are now up to 0.5! Huge news... ! Charlotte and Logan, so far, are managing to get along without too much of a bother :)
Today he was able to sit up all by himself, just pulling a little on the bed bars. He stood for the scales and even took a few shaky steps (well 2 to be honest). His bilirubin is down to 38 and his pain has lessened. His weight is a little heavier, but they didn't account for the fact that he would take to drinking so well again, so they are decreasing the fluids they give him today to compensate. His blood sugars were up last night and tonight, resulting in 6 units of fast acting insulin being given today. The doc is not sure why this is happening again as it is not due to the steroids, which have been reduced. She is not concerned at the moment, but realistically, if that's all he comes out of here with, that's ok!
Think his BP and pulse rate are still quite high, but his body is going through a lot of stress and has been poisoned several times over... so it's not really surprising. Though he has just gone down for a morning nap (11.20am), he has been awake and conversing all morning... huge improvements even on yesterday.
And earlier we had a call from Nell to say she's coming up so I'm in a good mood! Touch wood (and I do so several times a day), it's gonna be a great day. The docs have warned us that the road ahead is long... but for today... we are all just gonna smile!
hugs and love
Tracy
Sunday, October 23, 2011
Transplant Day +13
Superstitious me doesn't like 13 but today is the exception. Logan had good news from the doc... although she did stress each day stands alone and things go up and down at the drop of a hat.
We were told the following:
- Logan's white cell count has gone up to 0.5
- his kidney function is better
- his bilirubin level has gone down to 75
- his inwards and outwards goods (as I call it) are about level so he is not retaining extra fluid with the help of the drugs he is on at present
- he lost 0.2 of a kilo over night (all fluid)
- they are weaning him off his TPN and building up the nasal gastric feeding, which he is only having till he is able to eat again
Logan gave his Nana and Grandad a surprise in Te Awamutu today, when they phoned us to see how he was doing, and he was able to talk with them personally. It was a brief conversation as he is on oxygen and tires easily, but they were overjoyed.
Yesterday Logan was totally worn out... as usual, our Hamilton 'family' extended their love with visits from Sue (his teacher at NHS), Paul and Yvonne, and Helen and Geoff. It means so much to us that you come all this way, knowing that you may get here and you might be turned away. We cant wait to come 'home'.
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| Logan and Rosie on Friday just as she was leaving to go home with Brad |
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| Brothers... Brad stops in for a visit (which Logan mostly sleeps through) |
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| Logan's teacher Sue (from NHS) came up especially to see Logan before the holidays finished... he SKYPE's his class on Tuesday's and Thursdays when he is well enough |
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| From the left, Paul, Helen, Yvonne, and Geoff all visited Logan at the same time... he was tuckered out, but happy |
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| Logan this morning... an attempt to show you his 'yellowness' failed miserably, so you will just have to look at his good-lookingness |
That's all for now my friends... Evan is walking down to party central later this arvo to check it out seeing as we are here... rather him that me... I'd rather watch from afar...
hugs to all
Tracy
Saturday, October 22, 2011
Transplant Day + 12
Oooops.... think today is +day 12 but it's getting fuzzy now... you'd think a teacher could calculate these things. But not to stress on the little things....
Big thank you to the Aldridges for their lovely card that Logan received. He is so home sick, and misses all his friends. Especially now that Rosie has gone home. The packages and cards from home, along with the short SKYPE chats are so special to him.
Finally saw Logan's actual doc today, as opposed to the rotation consultants, and she said Logan is beginning to stabilise. His liver is still a problem, but not more of a problem that yesterday. His fluid retention is still a problem, and they are still giving him medicine for it, but not more of a problem than yesterday. His mucositis is still an issue, but has improved in his mouth, so they are assuming that it has improved slightly in his gut also. They have restarted his nasal gastric tube and are giving feeds at 10ml per hour. They will see if this upsets his tummy or not. He is already drinking water, juice, cold milk drinks and the occasional cold milo so they are trying to give less TPN and other fluid, which will also help to decrease the fluid retention.
Today they have temporarily stopped his TPN as his potassium reading was way too high. They ordered it to be retested, and will not resume TPN till those results get back.
Logan's skin has begun to peel. It began on his hands, and he is now loosing patches on his eyelids, shoulders and tummy. His skin has begun to darken, so he is no longer my little milk bottle boy. He has quite a tan. This is what is peeling, because like all tans, they are just the result of the skin burning and his is burnt from the radiation. But he had no redness like one would have after a lovely day at the beach. We rub aqueous cream onto his hands, feet, eyelids, and any other bits that are peeling, three times a day.
Today he is getting another round of platelets as his level is again under 10. He is still on oxygen and his blood pressure is still high. The doc suggested that he sit as vertical as possible to relieve the pressure on the lungs (from his fluid filled abdomen), which will allow them to fill more. Lucky for him he has a bendy bed so he just pushes a variety of buttons and voila!
Hope that this posts finds you all well. And that my school friends have dragged themselves back to their classes to prepare for the last term of this RWC year. At least it will be a short one!
Hugs and kisses to all,
Tracy
Big thank you to the Aldridges for their lovely card that Logan received. He is so home sick, and misses all his friends. Especially now that Rosie has gone home. The packages and cards from home, along with the short SKYPE chats are so special to him.
Finally saw Logan's actual doc today, as opposed to the rotation consultants, and she said Logan is beginning to stabilise. His liver is still a problem, but not more of a problem that yesterday. His fluid retention is still a problem, and they are still giving him medicine for it, but not more of a problem than yesterday. His mucositis is still an issue, but has improved in his mouth, so they are assuming that it has improved slightly in his gut also. They have restarted his nasal gastric tube and are giving feeds at 10ml per hour. They will see if this upsets his tummy or not. He is already drinking water, juice, cold milk drinks and the occasional cold milo so they are trying to give less TPN and other fluid, which will also help to decrease the fluid retention.
Today they have temporarily stopped his TPN as his potassium reading was way too high. They ordered it to be retested, and will not resume TPN till those results get back.
Logan's skin has begun to peel. It began on his hands, and he is now loosing patches on his eyelids, shoulders and tummy. His skin has begun to darken, so he is no longer my little milk bottle boy. He has quite a tan. This is what is peeling, because like all tans, they are just the result of the skin burning and his is burnt from the radiation. But he had no redness like one would have after a lovely day at the beach. We rub aqueous cream onto his hands, feet, eyelids, and any other bits that are peeling, three times a day.
Today he is getting another round of platelets as his level is again under 10. He is still on oxygen and his blood pressure is still high. The doc suggested that he sit as vertical as possible to relieve the pressure on the lungs (from his fluid filled abdomen), which will allow them to fill more. Lucky for him he has a bendy bed so he just pushes a variety of buttons and voila!
Hope that this posts finds you all well. And that my school friends have dragged themselves back to their classes to prepare for the last term of this RWC year. At least it will be a short one!
Hugs and kisses to all,
Tracy
Friday, October 21, 2011
A busy day... on Transplant Day +12
Logan has had a bit of a rough day... He is retaining fluid again resulting in high blood pressure and lots of pain. His stomach is distended and sore. This fluid retention is apparently the biggest risk to his well-being at the moment, as it is stressing his heart, lungs and tissue.
He is developing positional bed sores and he is no longer able to get up and move around. The little blood spots have become numerous and in some cases quite large. They are walking a fine line of giving him enough platelets to keep him from bleeding, but not too many so that his liver clots up!
A chest x-ray was also done this arvo, and they decided he has some fluid on the lungs, but they are monitoring it at the moment. His oxygen levels have been progressively dropping over the last 24hrs, so he is now on a small dose of that to bring him up to 97%. They are giving him more blood as I type, with the hope that it will increase his oxygen levels, and generally help him to feel better.
This afternoon, he gave us all a scare and choked on his juice... this resulted in a group clean up job... but all ended well, and he dozed fitfully afterwards.
What it comes down to these days, is that keeping track of everything the docs say is getting harder and harder. They are giving him meds and changing meds several times a day and in our half dream state we are expected to know and understand it all... I would hate to be a second language speaker.
My fun part of today was when I took Brad to North Shore hospital to see his new baby half-brother. He was born two days ago and is so cute.
He is developing positional bed sores and he is no longer able to get up and move around. The little blood spots have become numerous and in some cases quite large. They are walking a fine line of giving him enough platelets to keep him from bleeding, but not too many so that his liver clots up!
A chest x-ray was also done this arvo, and they decided he has some fluid on the lungs, but they are monitoring it at the moment. His oxygen levels have been progressively dropping over the last 24hrs, so he is now on a small dose of that to bring him up to 97%. They are giving him more blood as I type, with the hope that it will increase his oxygen levels, and generally help him to feel better.
This afternoon, he gave us all a scare and choked on his juice... this resulted in a group clean up job... but all ended well, and he dozed fitfully afterwards.
What it comes down to these days, is that keeping track of everything the docs say is getting harder and harder. They are giving him meds and changing meds several times a day and in our half dream state we are expected to know and understand it all... I would hate to be a second language speaker.
My fun part of today was when I took Brad to North Shore hospital to see his new baby half-brother. He was born two days ago and is so cute.
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| Brad and his little brother Owain (pronounced Owen) born 21yrs and 10 days apart :) |
A post from Rose :D
Well, after 3 days of being up in Auckland with Logan I can finally conclude I have no idea what is going on. With that in mind I certainly have some gnarly pictures of his mouth which has come out with what looks like giant ulcers going right down into his stomach (with the fancy name of Mucositis). Along with that his gut has been sore with a not so happy liver and a constant red and flashing high blood pressure he still says the to nurses, "Yeah it's been a pretty cruisy week."
It's pretty quiet up here for the majority of the time; I have spent a lot of it rubbing cream on Logan's hands and feet while he sits there like royalty. His room is decorated with all the pictures and cards people have given him over the last 11 months, canteen balloons hung from the ceiling and a giant helium dolphin in the corner. Overall I have really enjoyed my time staying up here. The people at the house are all lovely and the nurses here are so nice, It is more like a giant family than anything else. I'm home again tonight though (in case you were wondering Mum) Haha, But I have really enjoyed my time catching up with Logan. :)
It's pretty quiet up here for the majority of the time; I have spent a lot of it rubbing cream on Logan's hands and feet while he sits there like royalty. His room is decorated with all the pictures and cards people have given him over the last 11 months, canteen balloons hung from the ceiling and a giant helium dolphin in the corner. Overall I have really enjoyed my time staying up here. The people at the house are all lovely and the nurses here are so nice, It is more like a giant family than anything else. I'm home again tonight though (in case you were wondering Mum) Haha, But I have really enjoyed my time catching up with Logan. :)
GOOD NEWS
Logan has white cells... 0.38
Engraftment has officially begun... Charlotte is loose in his body... anything could happen now! His blood type will change to hers and hopefully do it's job...
Will keep you posted
Tracy
Engraftment has officially begun... Charlotte is loose in his body... anything could happen now! His blood type will change to hers and hopefully do it's job...
Will keep you posted
Tracy
Thursday, October 20, 2011
Transplant Day + Day 10
Man... where did the days go. Amanda and Rosie came to visit yesterday, Amanda for the day, and Rosie for a couple. Her and I had a sleep over at Ronald McD whilst Evan held the fort with Logan.
Today brought new news. Logan's gut has become distended. He is retaining large amounts of fluid in his tissues. It's all very complicated things are so out of balance in his body that the doctors and nurses are constantly giving him things to counteract the effects of the other stuff they give him.
He is not peeing as the fluid has been drawn into the tissues, so they gave him stuff to pee which has lowered the level of potassium in his body and so it goes on... New news today though, is that he has developed V.O.D.
(veno-occlusive disease), which I think means that he has clots in the small veins in the liver. It happens in some patients in the first month and cannot be prevented. They do, however, have meds to help heal it... they hope. It can be quite serious, but we have to wait and see what happens. It is causing him some pain.
Today brought new news. Logan's gut has become distended. He is retaining large amounts of fluid in his tissues. It's all very complicated things are so out of balance in his body that the doctors and nurses are constantly giving him things to counteract the effects of the other stuff they give him.
He is not peeing as the fluid has been drawn into the tissues, so they gave him stuff to pee which has lowered the level of potassium in his body and so it goes on... New news today though, is that he has developed V.O.D.
(veno-occlusive disease), which I think means that he has clots in the small veins in the liver. It happens in some patients in the first month and cannot be prevented. They do, however, have meds to help heal it... they hope. It can be quite serious, but we have to wait and see what happens. It is causing him some pain.
Logan is so funny. When the doc came in this morning and asked how he was, he said fine... nothing eventful. She is constantly amazed at his laid back attitude. I think that is why they take a little longer to find things wrong with him, cause he never bothers to complain. Anyhoo.... more photos to dazzle you with...
Love to all...
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| Logan had his liver checked yesterday to see if there were any abnormalities... it was enlarged |
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| Rose said he had a food baby, and a sausage baby, and .... |
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| Rose lent a hand (literally) and helped to apply steroid cream to Logan's burning hands... |
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| ... and his feet |
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| Amanda taking a photo of Evan taking a photo of her |
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| A two (wo)man job! |
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| Logan looks suddenly 'uncertain' about this cream business |
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| "Oh Rosie... I'm sick remember!" |
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| With big sis Amanda |
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| Mum drains stomach acid for testing before giving meds through the feed tube |
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| Platelets... his level was less than 10! |
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| Whilst Logan naps, Rosie brushes up on her biology for an upcoming exam |
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| During some meds, Logan has to be constantly monitored to ensure he is ok... |
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| Rosie has become quite the natural nurse and often lends a helping hand... Here she is helping Logan to re-tape his nose tube |
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| It's all so confusing! |
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| Logan has moved up to two poles now... he's special |
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| More life saving blood from Mr or Mrs Anonymous... without it Logan would not survive! |
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| If you didn't know what was inside it... it almost looks pretty! |
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| The mucositis under Logan's tongue is beginning to come away |
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| Large chunks of dead skin are coming loose and Logan is constantly washing his mouth out to get rid of it... the pain requires morphine :( |
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| These spots are petechial hemorrhages, which are beginning to show up all over his body as the small cells bleed due to low platelets |
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