A dramatic evening in room 17... Logan has given us all a scare tonight... heart racing... and blood pressure dropping lower than it has been in ages. Apparently he had a reaction to the drug they gave him to reduce his dangerously high blood pressure... what can I say... the domino affect strikes again...
Have things settled down? not yet... his pulse is still over 150bpm and his blood pressure is on the rise again... he is refusing to have a canular inserted to have medicine put in that will draw fluid from the tissue... If he pee's or poo's much more I think he will turn inside out...
Three doctors, an ECG machine, and other bells and whistles later... Logan is trying to settle in for the night... Maybe we will have our fireworks another night... but that is another story...
It was scary to watch this all unfold... but with a panted breath, Logan has just said that he was glad that it happened when Charlee and Rosie had headed back to the house.
His body is struggling to fight the war that is raging inside...
God give him strength
Saturday, November 5, 2011
Happy Anniversary Baby... got you on my mind....
What does one say to someone who has reached the one year anniversary of their diagnosis... The lyrics to the song below... featured in the movie RENT, seem fitting... listen to the song on line or hire the movie... tis a bit different, but captures the essence of some peoples struggles...
Seasons Of Love lyrics
Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?
In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure, a year in the life?
How about love?
How about love?
How about love?
Measure in love
Seasons of love
Seasons of love
Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand journeys to plan
Five hundred twenty-five thousand six hundred minutes
How do you measure the life of a woman or a man?
In truths that she learned
Or in times that he cried
In bridges he burned
Or the way that she died
It's time now, to sing out
Though the story never ends
Let's celebrate
Remember a year in the life of friends
Remember the love
(Oh, you got to, you got to remember the love)
Remember the love
(You know that life is a gift from up above)
Remember the love
(Share love, give love, spread love)
Measure in love
(Measure, measure your life in love)
Seasons of love
Seasons of love
(Measure your life, measure you life in love)
My apologies for not writing yesterday... it was an overwhelming 24hrs that stretched us to the limit... both emotionally and physically. By yesterday arvo, Logan had reached breaking point and one by one we were ordered from the room. Logan needed space and time to regroup.
Today, his emotional state is slightly better. It was helped, of course, by Rosie, Nana and Grandad, and Paul and Yvonne all coming up from Hamilton and Te Awamutu to visit. We miss them all so much.
Although Logan's blood counts are doing well, we continue to struggle with most other aspects of his well-being. His blood pressure, glucose levels, diarrhea, fluid retention, electrolytes and all the other fiddly bits that I am naive about, are continuing to cause problems. He is not what they would call 'stable' apparently. I guess, that once his gut heals, and he can eat, then things will begin to return to normal. His body is similar to a large room of domino's that keep falling down, no matter what you do.
We are waiting to hear on Monday, hopefully, the results of the biopsy. They are about 98% certain that the runs are being caused by GVHD, but there is an off-chance that a viral infection is the culprit. Meanwhile, Logan has to wait and tolerate!
Today's bloods:
White cells:10.92
Neutraphils:8.10
Hb:103
Platelets:11
Bilirubin:60
I have put up a couple more photo's... hope you enjoy...
Seasons Of Love lyrics
Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?
In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure, a year in the life?
How about love?
How about love?
How about love?
Measure in love
Seasons of love
Seasons of love
Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand journeys to plan
Five hundred twenty-five thousand six hundred minutes
How do you measure the life of a woman or a man?
In truths that she learned
Or in times that he cried
In bridges he burned
Or the way that she died
It's time now, to sing out
Though the story never ends
Let's celebrate
Remember a year in the life of friends
Remember the love
(Oh, you got to, you got to remember the love)
Remember the love
(You know that life is a gift from up above)
Remember the love
(Share love, give love, spread love)
Measure in love
(Measure, measure your life in love)
Seasons of love
Seasons of love
(Measure your life, measure you life in love)
My apologies for not writing yesterday... it was an overwhelming 24hrs that stretched us to the limit... both emotionally and physically. By yesterday arvo, Logan had reached breaking point and one by one we were ordered from the room. Logan needed space and time to regroup.
Today, his emotional state is slightly better. It was helped, of course, by Rosie, Nana and Grandad, and Paul and Yvonne all coming up from Hamilton and Te Awamutu to visit. We miss them all so much.
Although Logan's blood counts are doing well, we continue to struggle with most other aspects of his well-being. His blood pressure, glucose levels, diarrhea, fluid retention, electrolytes and all the other fiddly bits that I am naive about, are continuing to cause problems. He is not what they would call 'stable' apparently. I guess, that once his gut heals, and he can eat, then things will begin to return to normal. His body is similar to a large room of domino's that keep falling down, no matter what you do.
We are waiting to hear on Monday, hopefully, the results of the biopsy. They are about 98% certain that the runs are being caused by GVHD, but there is an off-chance that a viral infection is the culprit. Meanwhile, Logan has to wait and tolerate!
Today's bloods:
White cells:10.92
Neutraphils:8.10
Hb:103
Platelets:11
Bilirubin:60
I have put up a couple more photo's... hope you enjoy...
 |
| Payback... snaps of Mum sleeping!!! |
 |
| Grandad loves his Logan |
 |
| Logan misses his Nana |
 |
| Paul and Yvonne share a fun moment with Logan |
 |
| Balloons decorate the windows to celebrate our special day |
Thursday, November 3, 2011
Transplant Day +24 - Evening edition
What a difference a sleep makes... This afternoon, Logan took on a whole new lease... he was awake and vibrant, talking animatedly with the nurses and enjoying the day. It was great to see, knowing what a difficult 36hrs he had had prior to this.
He has had a further nap this afternoon, but has enjoyed the company of his sister, father and myself. Jill left for Hamilton mid-afternoon after a brief sleep at RMcD house. What a treasure she is to give us such a gift. We are truly grateful.
Logan's weight is down to 72.45kg, thanks to the meds. His blood pressure shot to an all time high today, so they had to get rid of some of his retained fluid quickly. His feet are less swollen, and his build is more slender. He vomiting has settled to once a day (randomly with no warning), and his diarrhea is debateably less... he is certainly visiting the little room less often.
His bloods today:
white cells - 5.89
neutraphils - 4.56
Hb - 86
platelets - 20
bilirubin - 32
So we end the day with a smile and positive attitude.
We would like to send out a big thank you the Schippers, who sent another package from home... 'a small bag of big puns', a stress ball, some chocolate, a beautiful card, and some car-juice vouchers. Thanks so much for you kind, humorous words and your love. Your packages are always welcomed with open arms, as Logan knows how much effort you put into them, and they are always exciting to open.
Thanks also to Nana and Grandad for your card... Logan loves to get them from you... you are so far away, but you always take the time to phone and write several times a week... we love you.
TTFN
Tracy
He has had a further nap this afternoon, but has enjoyed the company of his sister, father and myself. Jill left for Hamilton mid-afternoon after a brief sleep at RMcD house. What a treasure she is to give us such a gift. We are truly grateful.
Logan's weight is down to 72.45kg, thanks to the meds. His blood pressure shot to an all time high today, so they had to get rid of some of his retained fluid quickly. His feet are less swollen, and his build is more slender. He vomiting has settled to once a day (randomly with no warning), and his diarrhea is debateably less... he is certainly visiting the little room less often.
His bloods today:
white cells - 5.89
neutraphils - 4.56
Hb - 86
platelets - 20
bilirubin - 32
So we end the day with a smile and positive attitude.
We would like to send out a big thank you the Schippers, who sent another package from home... 'a small bag of big puns', a stress ball, some chocolate, a beautiful card, and some car-juice vouchers. Thanks so much for you kind, humorous words and your love. Your packages are always welcomed with open arms, as Logan knows how much effort you put into them, and they are always exciting to open.
Thanks also to Nana and Grandad for your card... Logan loves to get them from you... you are so far away, but you always take the time to phone and write several times a week... we love you.
TTFN
Tracy
Transplant Day +24
Howdy all,
Thank goodness Charlee put up a post last night, cause I totally forgot! Before I say anything... I would like to give the biggest thank you ever to our friend Jill, who spent the night with Logan. Being in the industry herself, it was nothing she hadn't done before, and she made Logan at ease and comfortable. I wish she could have had a comfortable night herself... I think she is headed to RMcD shortly for a nap before driving back to Hamilton.
Jill and Logan unfortunately had stuff all sleep last night, waking at least every half hour to go to the bathroom (Logan, not Jill), which of course required Jill also to be up... She said she hasn't read at 4am for a long time and it felt quite bizarre. It's all about team work and they did well together. A super night nurse always helps, and along with Jill, they had one of the best last night.
Yesterday evening we met with the gastroenterologist who performed Logan's biopsy yesterday. He is a lovely man. He gave me photo's of Logan's insides (which I will post if I can get a digital copy), and we were able to see the damage that has been done. His upper tract is doing quite well... there are a couple of red spots, of which they took samples. His tract from the other end is not so good... it is red raw. They took samples of this also, but didn't investigate too high in case they tore the bowel wall. His platelets were very low so the risk of bleeding was quite high. Apparently they will not be able to give us any definite information for several days as it takes that long to diagnose GVHD, but viral infections may get us quicker results.
He is back on 1-1 nursing again today. He has gained a kilo since last night, so they are giving him foruzamide (god knows how that is spelt!) to made him pee, and another drug to help draw the fluids from the tissue. Logan has huge, fluid filled feet, which don't seem to bother him, but are keeping his dad and I amused.
Each day, I don't think he can get any lower, but he does. There a moments of sunshine, where he smiles and laughs and puts on a brave face, but then the wall comes crashing down and he goes into himself again. He has done this, this morning. The staff have a certain amount of respect for him and his strength. They know he is in pain, but he complains very little, if at all. He continuously gets up to the bathroom, round the clock, having no sleep, and moving in a dream state. Occasionally, his veneer slips and he will refuse to be weighed or refuse his finger prick, or some such... but it is temporary, and I can usually bring him around by getting him to give me a time that it can be done.
Logan has given up entertaining visitors... he likes them to sit with him, but he is past being able to hold conversations or being witty. Windows of his personality still shine through, but his happy-go-lucky attitude is wrapped in a cloud of pain and exhaustion.
Daily, I fight to help Logan have some control - it probably bugs the nurses, but allowing him to weight when he is ready, or let doctors examine him when he is ready, etc, are small things that give him a grip on this crazy scene.
Yesterday and today are the first days that Logan has begun to admit that he feels 'shit'. It has been an eye opener for us all. And was probably hard for him to tell us. But now, he makes no secret of it. He will only say so if asked, but you will get the truth. The nurse and I butted heads gently today. She was trying hard to monitor Logan, and administer his meds and take tests, whereas I was trying hard to ensure that he was not disturbed. We knew that each other was looking out for his best interests, but backing down was not in either of our natures! We compromised, with me getting my own way for an hour, then her getting her own way... LOL! At least he got an hour... the longest sleep he had had in 36 hrs! Having done her thing... it is my turn again now. She is so nice too... in another life time I might even have been friends with her!
Another nurse has come in and said that Logan's blood pressure is becoming concerning. They wanted him to take a tablet. He is not even drinking water. I suggested they find an IV version... they are coming back to me :)
In all honesty... I think our time projections are going to be blown out of the water... It appears his GVHD (to be confirmed) is severe and along with everything else, the road is probably going to get worse before it gets better.
God give us strength....
Logan reminded me yesterday: no-one said life would be easy, just that it would be worth it.
Tracy
Thank goodness Charlee put up a post last night, cause I totally forgot! Before I say anything... I would like to give the biggest thank you ever to our friend Jill, who spent the night with Logan. Being in the industry herself, it was nothing she hadn't done before, and she made Logan at ease and comfortable. I wish she could have had a comfortable night herself... I think she is headed to RMcD shortly for a nap before driving back to Hamilton.
Jill and Logan unfortunately had stuff all sleep last night, waking at least every half hour to go to the bathroom (Logan, not Jill), which of course required Jill also to be up... She said she hasn't read at 4am for a long time and it felt quite bizarre. It's all about team work and they did well together. A super night nurse always helps, and along with Jill, they had one of the best last night.
Yesterday evening we met with the gastroenterologist who performed Logan's biopsy yesterday. He is a lovely man. He gave me photo's of Logan's insides (which I will post if I can get a digital copy), and we were able to see the damage that has been done. His upper tract is doing quite well... there are a couple of red spots, of which they took samples. His tract from the other end is not so good... it is red raw. They took samples of this also, but didn't investigate too high in case they tore the bowel wall. His platelets were very low so the risk of bleeding was quite high. Apparently they will not be able to give us any definite information for several days as it takes that long to diagnose GVHD, but viral infections may get us quicker results.
He is back on 1-1 nursing again today. He has gained a kilo since last night, so they are giving him foruzamide (god knows how that is spelt!) to made him pee, and another drug to help draw the fluids from the tissue. Logan has huge, fluid filled feet, which don't seem to bother him, but are keeping his dad and I amused.
Each day, I don't think he can get any lower, but he does. There a moments of sunshine, where he smiles and laughs and puts on a brave face, but then the wall comes crashing down and he goes into himself again. He has done this, this morning. The staff have a certain amount of respect for him and his strength. They know he is in pain, but he complains very little, if at all. He continuously gets up to the bathroom, round the clock, having no sleep, and moving in a dream state. Occasionally, his veneer slips and he will refuse to be weighed or refuse his finger prick, or some such... but it is temporary, and I can usually bring him around by getting him to give me a time that it can be done.
Logan has given up entertaining visitors... he likes them to sit with him, but he is past being able to hold conversations or being witty. Windows of his personality still shine through, but his happy-go-lucky attitude is wrapped in a cloud of pain and exhaustion.
Daily, I fight to help Logan have some control - it probably bugs the nurses, but allowing him to weight when he is ready, or let doctors examine him when he is ready, etc, are small things that give him a grip on this crazy scene.
Yesterday and today are the first days that Logan has begun to admit that he feels 'shit'. It has been an eye opener for us all. And was probably hard for him to tell us. But now, he makes no secret of it. He will only say so if asked, but you will get the truth. The nurse and I butted heads gently today. She was trying hard to monitor Logan, and administer his meds and take tests, whereas I was trying hard to ensure that he was not disturbed. We knew that each other was looking out for his best interests, but backing down was not in either of our natures! We compromised, with me getting my own way for an hour, then her getting her own way... LOL! At least he got an hour... the longest sleep he had had in 36 hrs! Having done her thing... it is my turn again now. She is so nice too... in another life time I might even have been friends with her!
Another nurse has come in and said that Logan's blood pressure is becoming concerning. They wanted him to take a tablet. He is not even drinking water. I suggested they find an IV version... they are coming back to me :)
In all honesty... I think our time projections are going to be blown out of the water... It appears his GVHD (to be confirmed) is severe and along with everything else, the road is probably going to get worse before it gets better.
God give us strength....
Logan reminded me yesterday: no-one said life would be easy, just that it would be worth it.
Tracy
Wednesday, November 2, 2011
Transplant Day +23 - Home Alone Edition
Hello everyone,
Today you get to listen to me, Charlotte.
I have only done a couple of these before so I can't promise you anything as exciting as what Logan or Mother writes.
I arrived today shortly after 4.00pm and have spent the majority of my evening here. Even if Logan is watching a movie and I am sitting here staring into space it's still nice to be in each others company for the first time in a while.
Jill arrived at 11.00am I am told and has spent the day with Mum and Dad learning the ropes so she can care for Logan tonight and give Mum and Dad a much needed break and time together. They departed the hospital just before 7.00pm and have left Logan in mine and Jill's hands MUHAHAHA.
She text us just before and asked how he was. We both text her back saying that Logan and I were playing in the elevators hehe.
Logan has been doing pretty good this evening. He even managed to watch RENT! Which he seemed to thoroughly enjoy which is great.
The doctor came by this evening and they are going to give Logan some medicine to make him pee more. Yeap thats the only thing I can say. I'm not very up with the medical jargon. I'm sure Mum will give you a full run down tomorrow anyway.
Logan is going to sleep as I write this so I shall head to bed myself.
Send him happy vibes!!
Charlotte
Today you get to listen to me, Charlotte.
I have only done a couple of these before so I can't promise you anything as exciting as what Logan or Mother writes.
I arrived today shortly after 4.00pm and have spent the majority of my evening here. Even if Logan is watching a movie and I am sitting here staring into space it's still nice to be in each others company for the first time in a while.
Jill arrived at 11.00am I am told and has spent the day with Mum and Dad learning the ropes so she can care for Logan tonight and give Mum and Dad a much needed break and time together. They departed the hospital just before 7.00pm and have left Logan in mine and Jill's hands MUHAHAHA.
She text us just before and asked how he was. We both text her back saying that Logan and I were playing in the elevators hehe.
Logan has been doing pretty good this evening. He even managed to watch RENT! Which he seemed to thoroughly enjoy which is great.
The doctor came by this evening and they are going to give Logan some medicine to make him pee more. Yeap thats the only thing I can say. I'm not very up with the medical jargon. I'm sure Mum will give you a full run down tomorrow anyway.
Logan is going to sleep as I write this so I shall head to bed myself.
Send him happy vibes!!
Charlotte
Transplant Day +23
Hmmm... How is Logan today?
Exhausted, wracked by cramps, grumpy, scared, anxious, sleepy, dry, disillusioned.... to say but a few
At the 11th hour yesterday, surgery was postponed... It left Logan with the smiliest face I have seen him wear in a long time, making me realise just how much he was dreading this particular procedure.
Another restless night followed, and somewhere in the 3-4am period, his nurse Nikki, bless her, formed a pact with Logan and they omitted me from the rest of the night, working together to get Logan to the bathroom etc. It was much appreciated.
Evan arrived (unbeknownst to me) at around 6.30am, and woke me at 8am, saying they were taking Logan to theatre... the ward had been given no notice and our poor nurse was running around in a flutter. Within a 15 minute time span, we needed to take his blood sugar level, inject him with the required amount of insulin, get his cycosporin running (immune suppressant drug), weight him, and put up platelets to counter his low amount.
In retrospect, this was never going to happen... In the middle of it all, Logan got tummy cramps which sent him back to the bathroom. He was there at least half an hour whilst the rest of us were still trying to do what was needed around him.
They finally called it off, as the platelets were not going to get here quickly... This was the second postponement for him, and I dont know if he was happy or relieved. It took us a long time to get him rallied for it. The severity of his diarrhea is giving him anxiety on the transport side of things and the after care following the surgery.
Meanwhile, we were recovering from all this, when Logan asks when he can have his next dose of Buscapan, as the cramps are getting worse... Only to discover that tho he is due it now, they cant give it for another hour as the other meds are running behind and there is no free line space....
Now picture this... you are at the zoo... you are looking at a lioness in a cage with her cub... a hyena comes on the scene... the lioness becomes enraged and protective... rationale not always playing part in her thinking... need I go on...
For Logan's sake, I maintained decorum, but only just, and whilst he was out of earshot, I let rip to Evan just what I thought of this ###### hospital and it ###### rules and ###### service....
Ironically I felt much better after that, and just to prove that someone upstairs does listen, my favourite nurse (Carl) who is co-ordinating the shift today, came in with the buscapan, stopping his TPN feed... honestly a no-brainer...
And accordingly, Logan sleeps... We have been told that we will have little or no notice again when he is called, which again begs the question... how the hell do they get the platelets into him????? They don't want to do it until he is on his way down, as this will give him the freshest possible amount in his system during the surgery.
Oh... did I happen to mention that most of the staff (not Carl) are giving me a wide berth today?
The shortened version (except you know I don't do short):
Yesterday and the day before, I had several staff members and 'support' people from CCF, social workers, nurses, etc, talk to me 'gently' about taking a break from caring for Logan... Maybe going to RMcD house, or taking a walk, or something... they said it would do me good... they said I needed to get out and have a break from Logan... THEY SAID IT IN FRONT OF LOGAN!
By the end of yesterday, and having received yet another 'chat' I lost the plot with the head of the transplant team... (oops), explaining that my son was my top priority and, who was I going to leave him with, and that if I did leave, it would be to spend time with my husband, taking me back to the question of who will look after Logan? They have put him back onto nurses who have 2 or 3 patients... so sometimes the nurses are busy, and then at break time, they can have 4 - 7 patients...
I basically explained that I wasn't leaving my son unless he was with someone he both trusted and was also able to give him 1 - 1 caring. I also explained that it was 'jolly bad form' to discuss this in front of Logan, as they had all done (he as in the bathroom as I whispered/hissed this), and that they might like to take that to their meeting and discuss it (as apparently I had been a topic of conversation at their team meetings)...
By the time they left... sanity had long since left my head and it took quite some time to return. Logan relies on me to keep to wolves at bay... to stop them from waking him, to check the meds they give him, to get him to the toilet, to keep him warm, to meet his personal needs and so much more...
What we are going through is short term... it is not permanent... and as with raising teenagers, I am not here to make friends, just to do the best job I can... They got that at Waikato... they would do good to get it here too!
I leave this with you... stand up for your beliefs... if they harm no-one and especially if they protect someone... and super especially, if that someone is unable to protect themselves...
I would like to give an all encompassing thank you, to everyone who has been, and continues to, be there for us... my Waikato family is irreplaceable. At this stage in his treatment, Logan is not as aware of how much strength we gain from you love, as he just struggles to get through each day with a semblance of dignity and sanity. But Evan and I know... we are humbled by your love, your prayers, and your practical help...
Thanks to Jill who is on her way up to give me some support on the ward today and tonight so I can spend some time with Evan, knowing that Logan is be safe. Thanks to Janaya, who is cooking Brad his favourite meal. Thanks to Nana and Grandad in Te Awamutu who ring constantly, sharing their love and understanding our anxieties... and planning our Christmas dinner together... Thanks to all the people coming this weekend to see Logan... some who are staying at RMcD house, and others who are stopping in. Thanks....
Until we chat again
TTFN
Tracy
Exhausted, wracked by cramps, grumpy, scared, anxious, sleepy, dry, disillusioned.... to say but a few
At the 11th hour yesterday, surgery was postponed... It left Logan with the smiliest face I have seen him wear in a long time, making me realise just how much he was dreading this particular procedure.
Another restless night followed, and somewhere in the 3-4am period, his nurse Nikki, bless her, formed a pact with Logan and they omitted me from the rest of the night, working together to get Logan to the bathroom etc. It was much appreciated.
Evan arrived (unbeknownst to me) at around 6.30am, and woke me at 8am, saying they were taking Logan to theatre... the ward had been given no notice and our poor nurse was running around in a flutter. Within a 15 minute time span, we needed to take his blood sugar level, inject him with the required amount of insulin, get his cycosporin running (immune suppressant drug), weight him, and put up platelets to counter his low amount.
In retrospect, this was never going to happen... In the middle of it all, Logan got tummy cramps which sent him back to the bathroom. He was there at least half an hour whilst the rest of us were still trying to do what was needed around him.
They finally called it off, as the platelets were not going to get here quickly... This was the second postponement for him, and I dont know if he was happy or relieved. It took us a long time to get him rallied for it. The severity of his diarrhea is giving him anxiety on the transport side of things and the after care following the surgery.
Meanwhile, we were recovering from all this, when Logan asks when he can have his next dose of Buscapan, as the cramps are getting worse... Only to discover that tho he is due it now, they cant give it for another hour as the other meds are running behind and there is no free line space....
Now picture this... you are at the zoo... you are looking at a lioness in a cage with her cub... a hyena comes on the scene... the lioness becomes enraged and protective... rationale not always playing part in her thinking... need I go on...
For Logan's sake, I maintained decorum, but only just, and whilst he was out of earshot, I let rip to Evan just what I thought of this ###### hospital and it ###### rules and ###### service....
Ironically I felt much better after that, and just to prove that someone upstairs does listen, my favourite nurse (Carl) who is co-ordinating the shift today, came in with the buscapan, stopping his TPN feed... honestly a no-brainer...
And accordingly, Logan sleeps... We have been told that we will have little or no notice again when he is called, which again begs the question... how the hell do they get the platelets into him????? They don't want to do it until he is on his way down, as this will give him the freshest possible amount in his system during the surgery.
Oh... did I happen to mention that most of the staff (not Carl) are giving me a wide berth today?
The shortened version (except you know I don't do short):
Yesterday and the day before, I had several staff members and 'support' people from CCF, social workers, nurses, etc, talk to me 'gently' about taking a break from caring for Logan... Maybe going to RMcD house, or taking a walk, or something... they said it would do me good... they said I needed to get out and have a break from Logan... THEY SAID IT IN FRONT OF LOGAN!
By the end of yesterday, and having received yet another 'chat' I lost the plot with the head of the transplant team... (oops), explaining that my son was my top priority and, who was I going to leave him with, and that if I did leave, it would be to spend time with my husband, taking me back to the question of who will look after Logan? They have put him back onto nurses who have 2 or 3 patients... so sometimes the nurses are busy, and then at break time, they can have 4 - 7 patients...
I basically explained that I wasn't leaving my son unless he was with someone he both trusted and was also able to give him 1 - 1 caring. I also explained that it was 'jolly bad form' to discuss this in front of Logan, as they had all done (he as in the bathroom as I whispered/hissed this), and that they might like to take that to their meeting and discuss it (as apparently I had been a topic of conversation at their team meetings)...
By the time they left... sanity had long since left my head and it took quite some time to return. Logan relies on me to keep to wolves at bay... to stop them from waking him, to check the meds they give him, to get him to the toilet, to keep him warm, to meet his personal needs and so much more...
What we are going through is short term... it is not permanent... and as with raising teenagers, I am not here to make friends, just to do the best job I can... They got that at Waikato... they would do good to get it here too!
I leave this with you... stand up for your beliefs... if they harm no-one and especially if they protect someone... and super especially, if that someone is unable to protect themselves...
I would like to give an all encompassing thank you, to everyone who has been, and continues to, be there for us... my Waikato family is irreplaceable. At this stage in his treatment, Logan is not as aware of how much strength we gain from you love, as he just struggles to get through each day with a semblance of dignity and sanity. But Evan and I know... we are humbled by your love, your prayers, and your practical help...
Thanks to Jill who is on her way up to give me some support on the ward today and tonight so I can spend some time with Evan, knowing that Logan is be safe. Thanks to Janaya, who is cooking Brad his favourite meal. Thanks to Nana and Grandad in Te Awamutu who ring constantly, sharing their love and understanding our anxieties... and planning our Christmas dinner together... Thanks to all the people coming this weekend to see Logan... some who are staying at RMcD house, and others who are stopping in. Thanks....
Until we chat again
TTFN
Tracy
Tuesday, November 1, 2011
Transplant Day +22
Sorry for not posting earlier... Logan's surgery ended up being postponed till tomorrow morning. Logan has been exhausted all day, but we think, fingers crossed, that his trips to the loo are getting further apart... only time will tell. Doc said today that she will not be making any changes to his protocol till next week unless he gets worse. He has not eaten in days, and today took no drink either. He is reluctant to put anything in his body that might go shooting straight through. His weight loss has stablised today. Logan is sick of having cream put on his skin, and of having needles jabbed in him, and many other things, but still today, I heard him say to a nurse... Oh well, it won't last forever...
Bloods today:
Hb 102
Platelets 34
White cell count 3.95
Neutraphils 1.5 (will go up and down depending on when he has GCSF)
Bilirubin 44 (down on yesterday... yay!)
Our lovely friend Jill is coming up tomorrow to stay the night with Logan (not sure with or without me at this point as he will be having his surgery tomorrow and may need me). It will be lovely to see her, and to have a restful evening... my pointedness with staff today probably shows either my tiredness or my lack of sanity... take your pick!
Logan will be so glad to crawl into bed tonight, once his body allows it, as will I. We are praying for a better night's sleep... a healing sleep... with lovely dreams and peaceful feelings.
good night all
Tracy
Subscribe to:
Posts (Atom)