It's a week since Jimmy was discharged from hospital and as he gets stronger everyday I realise just how much he has been through in the last month.
Since Sunday he has not been breathless anymore when he talks. Up until 2 days ago he was even too weak to open a juice bottle. He has been very good about going for a walk each day. We have far too many steep hills in our neighbourhood so he has been doing 10 laps of the driveway twice a day and since yesterday he upped this to 12. He has also been working from home this week.
We had our follow up appointment with Prof Novitzky this evening and he is extremely happy with Jimmy's progress. He was originally booked off until the 5th of December but Prof has said if he feels up to it he can go back to work during next week with instructions to listen to his body. We now, as a matter of routine, take Jimmy's temperature morning and evenings so that nothing like this can spring on us again. Jimmy had the second half of his Polygam infusion today which took 4 hours. He will continue to have this on a monthly basis but at double the dose so we looking at about 7 hours a time and he can't drive afterwards so I guess I'll be getting quite far with my new crochet blanket I am making.
Prof has decreased Jimmy's cortisone dose down to 7 a day and stressed again that Jimmy needs to get off cortisone as soon as possible. His platelet count is 60 at the moment. Prof says he is not too concerned about the numbers at this stage as this is common with Thrombocytopenia (low platelet count). His big concern is that Jimmy doesn't get any of the side effects of Thrombocytepenia which is bleeding etc. He will have to continue to have his bloods done once a week so he can keep an eye on this as Jimmy's platelet count cannot go lower than 30. We spoke again about the Splenectomy and although Prof says we are assured a 85 to 95 % success rate of an increased platelet count, it worries him that Jimmy will not have a spleen when he comes out of remission.
So today we discussed a medicine called Nplate. Nplate injections are used on a monthly basis to treat Thrombocytopenia and help prevent bleeding in patients with a blood disorder called chronic immune thrombocytopenia (ITP). This medicine is used when other medicines, such as steroids or immunoglobulins, have not worked well enough. (The Polygam that Jimmy is having monthly is an immunoglobulin). Nplate works by stimulating the bone marrow to produce more platelets. Prof is going to do a motivation for the medical aid and try get them to authorise it although he said we shouldn't get too excited as these injections are R60 000.00 a shot. Authorisation takes between 5 and 6 weeks. And speaking of dollars, we got Jimmy's ICU account today...R270 000.00.
There is much excitement at home this evening as Loren wrote her last matric exam today. Another chapter of my life finished....I can't believe I have another baby spreading her wings. We have been very busy with applications, references, medical tests etc as Loren is going to take a gap year and go and au pair in the states next year. Emma writes her last exam tomorrow and then it's count down to the end of the school year.
My other news is that with all this stuff going on Megan finished her 16 day cross over from Europe to the USA and arrived safely in Houston on the 14th. She does a 7 day cruise every 7 days leaving Houston on a Saturday afternoon and stopping at Cozumel Mexico, Belize City and Roatan and then back to Houston. It's a bit more difficult to talk to her now as she is always 7 or 8 hours behind us. I had a lovely telephone call with her a few days ago at 1am and it was good to hear from her and she isn't sounding as tired as she was when we saw her in Europe. Of course Megan is very happy to hear that Jimmy is so much better....it has been really tough on her not being here and worrying about him. Thank goodness for technology with Skype and Face Time where we can see each other.
2015/11/25
2015/11/18
Wednesday, 18th November
The fantastic news is Jimmy was discharged this morning.
He is still very weak and was exhausted after the trip home but looking comfortable in his lazyboy catching up on all the protest action at universities and the terrorist attacks in Paris. It's hard to believe everything that has happened in what tomorrow would have been 3 weeks that he spent in hospital with six days, where he was in a medically induced coma and on a ventilator, which will be lost to him forever.
Jimmy will see Prof on Wednesday for a follow up appointment, have bloods taken to check all his counts as well as a Polygam infusion which will take about 3 hours to run in. Polygam S/D intravenous is a sterilized solution made from human plasma. It contains the antibodies to help your body protect itself against infection. He is also back on 9 Cortisone tablets a day as well as some other new meds.
We have also been given strict instructions that he cannot go to the mall etc. or be in contact with anyone who has a cold, tummy bug, sore throat etc, or anyone who has been around anyone that is sick.
We are both very happy that he is home and look forward to a good recovery now.
2015/11/16
Monday, 16th November
Apologies for the lack up blog updates since last Thursday but I haven't had much to report on. I'm sure you all gathered that Jimmy did not come home on Saturday morning as we were hoping. He continues to improve and is looking much better. He is getting out of bed to shower now and physio also have him up twice a day walking the length of high care after which he is quite exhausted.
I was relieved to hear from Dr Du Toit that the raspy throat he developed on Friday afternoon is as a result of the ventilator tube and not another infection. His blood pressure dropped a bit on Friday evening so he is on a drip to increase his fluid intake and it has already come up a little again. Hopefully by the time I see him today it will be near to where it was at the end of last week. He has also been put back on oxygen, not permanently but rather a couple of times a day.
He had chest x-rays done on Friday which were not as good as we were expecting and this is the reason he wasn't discharged. They took some more at 6am this morning and Prof Novitzky saw Jimmy just after 7am and said that Jimmy will be in hospital for a few more days.
On a sad note Ewen leaves today to go back home to the UK.... the past 10 days went so quickly. But as he says he arrived to a Jimmy that was better than he thought he would be thanks to a good turn the evening before and he leaves knowing Jimmy is so much stronger, out of danger and positively heading towards a full recover.
Thanks for all your love and support Ewen and the hours you spent keeping Jimmy company. Safe travels today xx
I was relieved to hear from Dr Du Toit that the raspy throat he developed on Friday afternoon is as a result of the ventilator tube and not another infection. His blood pressure dropped a bit on Friday evening so he is on a drip to increase his fluid intake and it has already come up a little again. Hopefully by the time I see him today it will be near to where it was at the end of last week. He has also been put back on oxygen, not permanently but rather a couple of times a day.
He had chest x-rays done on Friday which were not as good as we were expecting and this is the reason he wasn't discharged. They took some more at 6am this morning and Prof Novitzky saw Jimmy just after 7am and said that Jimmy will be in hospital for a few more days.
On a sad note Ewen leaves today to go back home to the UK.... the past 10 days went so quickly. But as he says he arrived to a Jimmy that was better than he thought he would be thanks to a good turn the evening before and he leaves knowing Jimmy is so much stronger, out of danger and positively heading towards a full recover.
Thanks for all your love and support Ewen and the hours you spent keeping Jimmy company. Safe travels today xx
2015/11/12
Thursday, 12th November
One more step closer to recovery.....Jimmy was taken off oxygen today and we hoping that yesterday's blood transfusion is also the last. Perhaps tomorrow he will be strong enough to get up and have a shower as I am sure he would welcome this instead of the bed baths.
I can't believe today is 2 weeks that he has been in hospital already. Funny how it feels like he has been away a few days on a business trip when I think of his absence at home but it feels like I have been travelling to and from the hospital for 3 months already.
I can't believe today is 2 weeks that he has been in hospital already. Funny how it feels like he has been away a few days on a business trip when I think of his absence at home but it feels like I have been travelling to and from the hospital for 3 months already.
2015/11/10
Tuesday, 10 November
Jimmy is coming on in leaps and bounds. Mentally he is much more positive and although he keeps asking everyone when he can come home he understands that this will happen when he is medically fit.
His various numbers are all coming up nicely and he is still having physio twice a day. He had a blood transfusion today and they have also removed his catheter. He is still a bit breathless when he talks so they have him on oxygen but this is also getting better. Before the level would be around 95 on oxygen and now it's about 96 off oxygen and staying around 108 whilst on oxygen.
If all goes to plan he will more than likely be discharged on Monday.
His various numbers are all coming up nicely and he is still having physio twice a day. He had a blood transfusion today and they have also removed his catheter. He is still a bit breathless when he talks so they have him on oxygen but this is also getting better. Before the level would be around 95 on oxygen and now it's about 96 off oxygen and staying around 108 whilst on oxygen.
If all goes to plan he will more than likely be discharged on Monday.
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| Jimmy and his favourite visitor Ewen |
2015/11/08
Sunday, 8th November
It's lovely to see Jimmy improving more with each day. He was much more talkative this afternoon and evening and has started his home coming planning...he recons he doesn't need to go to high care and is going to discuss this with Prof Novitzky tomorrow morning and nothing I could say about waiting until he is well enough to come home so there are no relapses would help. Eish!! I'm just glad I can trust Prof.
He had a temperature spike this morning at 6am but this came down again and then stayed down for the remainder of the day. His platelets have dropped a little further so he had a platelet transfusion this evening and what a palava as he has no veins left. Prof Wilcox arrived for his check-up and offered to put the line in and the only place he could do it was in Jimmy's ankle. He mentioned that he is going to discuss with Prof Novitzky that he thinks Jimmy should have a port put in and there was a lot of mumbling and grumbling coming from Jimmy about this. Once the platelet transfusion was done they used the same line for a bag of potassium which burned Jimmy like hell. So they stopped it and put up a bottle of Perfalgan and waited for this to run through. It was nice and quick acting and he was more comfortable within 5 minutes and then he went back to getting the potassium. He will also be on Neupogen injections for a few days now to boost his white blood cell count.
I had a lovely breakfast this morning with Ewen and the folks and then got stuck in around the house seeing to all the things that have not been done during the last 10 days. I'm not sure if I actually slept well in between all the stupid nightmares or whether my body is finally adapting to the stress levels and hospital visits but I felt much better today and feel like I can definitely face the week head on.
We are now half way through matric finals with three weeks to go and Emma starts her final exams on Tuesday so wishing her all the best. Go girls!!
He had a temperature spike this morning at 6am but this came down again and then stayed down for the remainder of the day. His platelets have dropped a little further so he had a platelet transfusion this evening and what a palava as he has no veins left. Prof Wilcox arrived for his check-up and offered to put the line in and the only place he could do it was in Jimmy's ankle. He mentioned that he is going to discuss with Prof Novitzky that he thinks Jimmy should have a port put in and there was a lot of mumbling and grumbling coming from Jimmy about this. Once the platelet transfusion was done they used the same line for a bag of potassium which burned Jimmy like hell. So they stopped it and put up a bottle of Perfalgan and waited for this to run through. It was nice and quick acting and he was more comfortable within 5 minutes and then he went back to getting the potassium. He will also be on Neupogen injections for a few days now to boost his white blood cell count.
I had a lovely breakfast this morning with Ewen and the folks and then got stuck in around the house seeing to all the things that have not been done during the last 10 days. I'm not sure if I actually slept well in between all the stupid nightmares or whether my body is finally adapting to the stress levels and hospital visits but I felt much better today and feel like I can definitely face the week head on.
We are now half way through matric finals with three weeks to go and Emma starts her final exams on Tuesday so wishing her all the best. Go girls!!
2015/11/07
Saturday, 7th November
Jimmy is going from strength to strength.
Prof Novitzky came to see him this morning and said he still has some inflammation in both his lungs. His white blood cell count has dropped down again to 2.4 but he says these fluctuation are to be expected. The pneumonia actually started in one lung and then to the other. He says that this is probably as a result of the side effects that taking high doses of cortisone long term have on the body. He feels that we have unsuccessfully tried what we can in the form of medication to get Jimmy's platelets up and he thinks the next step is for Jimmy to have his spleen removed. So the goal for now is for Jimmy to recover and get strong in preparation for the Splenectomy.
Prof Wilcox also saw Jimmy today and he is happy with his breathing and oxygen levels. Physio managed to get him out of bed and do 50 on-the-spot steps which he was also impressed about. He said that Jimmy can be moved to high care on Monday.
And then our exciting, top secret news is that young Ewen arrived from the UK today. Ewen and Isabel collected him from the airport at 4:30pm and brought him straight to the hospital. It was so special to see the two of them together. It has been very hard on Ewen over the last 18 months, while Jimmy has been going through all this hell, living so far away and I believe it will do them both the world of good spending some time together. I'm just so glad that Jimmy was out of sedation by the time Ewen arrived.
Jimmy had his first proper meal today and watched quite a bit of the cricket. You know what I always say......he is feeling better if the sports channel is on.
Prof Novitzky came to see him this morning and said he still has some inflammation in both his lungs. His white blood cell count has dropped down again to 2.4 but he says these fluctuation are to be expected. The pneumonia actually started in one lung and then to the other. He says that this is probably as a result of the side effects that taking high doses of cortisone long term have on the body. He feels that we have unsuccessfully tried what we can in the form of medication to get Jimmy's platelets up and he thinks the next step is for Jimmy to have his spleen removed. So the goal for now is for Jimmy to recover and get strong in preparation for the Splenectomy.
Prof Wilcox also saw Jimmy today and he is happy with his breathing and oxygen levels. Physio managed to get him out of bed and do 50 on-the-spot steps which he was also impressed about. He said that Jimmy can be moved to high care on Monday.
And then our exciting, top secret news is that young Ewen arrived from the UK today. Ewen and Isabel collected him from the airport at 4:30pm and brought him straight to the hospital. It was so special to see the two of them together. It has been very hard on Ewen over the last 18 months, while Jimmy has been going through all this hell, living so far away and I believe it will do them both the world of good spending some time together. I'm just so glad that Jimmy was out of sedation by the time Ewen arrived.
Jimmy had his first proper meal today and watched quite a bit of the cricket. You know what I always say......he is feeling better if the sports channel is on.
2015/11/06
Friday, 6th November
After being so disappointed last night that they had to sedate Jimmy again I was expecting another day like yesterday, today.
I phoned ICU to check up on him before I went through this morning and they told me that they had turned off the sedation in the early hours of this morning. Once he was out of sedation they tested his breathing which was fine and he had been extubated. I couldn't get done quick enough and the drive through took forever to say the least.
When I walked in I stopped and smiled at him but he couldn't really make out who it was. Physio were busy with him so I just stepped a bit closer and then he waved at me. Oh my word...what a huge relief to have him awake.
He was still very groggy but this got better as the day went by. At first he complained that it was hard to breath but this improved. He is also extremely weak and very emotional. I talked to him on and off during the day to tell him what he had been through. He doesn't remember at all being transferred from high care to ICU or being told that they were going to sedate him and intubate him. As the day went on he started asking me questions like how long had he been there and when I told him that today was his 9th day and that he had been in a medically induced coma and on a ventilator because he couldn't breath by himself for 6 days he started crying. Later he asked me if I had been coming to see him and I explained that I had been with him each day, as had his folks and the kids had also been to see him he got upset again.
Physio came to see him again later in the afternoon. His Hickman line has been removed and because his left hand was so swollen they also removed that line today; this one was for taking bloods. Already a lot of the swelling in his fingers, face and neck has come down. Jimmy still has an oxygen mask he has to wear as this has to stay above 95. He is coughing quite a bit and takes the mask off when he does and the oxygen levels drop quite quickly. I'm hoping that they will change the mask for one of those prong type thingies that go up each nostril as this will be much more comfortable for him.
I had to laugh this afternoon. He definitely has a phobia about sleeping in hospital! He started moaning at the sister, telling her that he can't sleep and he hasn't slept for days. She told him that he has been dozing on and off all day and that he will have a good night's sleep tonight but if he can't sleep they will give him a sleeping tablet. And with that he went back to sleep again.
I phoned ICU to check up on him before I went through this morning and they told me that they had turned off the sedation in the early hours of this morning. Once he was out of sedation they tested his breathing which was fine and he had been extubated. I couldn't get done quick enough and the drive through took forever to say the least.
When I walked in I stopped and smiled at him but he couldn't really make out who it was. Physio were busy with him so I just stepped a bit closer and then he waved at me. Oh my word...what a huge relief to have him awake.
He was still very groggy but this got better as the day went by. At first he complained that it was hard to breath but this improved. He is also extremely weak and very emotional. I talked to him on and off during the day to tell him what he had been through. He doesn't remember at all being transferred from high care to ICU or being told that they were going to sedate him and intubate him. As the day went on he started asking me questions like how long had he been there and when I told him that today was his 9th day and that he had been in a medically induced coma and on a ventilator because he couldn't breath by himself for 6 days he started crying. Later he asked me if I had been coming to see him and I explained that I had been with him each day, as had his folks and the kids had also been to see him he got upset again.
Physio came to see him again later in the afternoon. His Hickman line has been removed and because his left hand was so swollen they also removed that line today; this one was for taking bloods. Already a lot of the swelling in his fingers, face and neck has come down. Jimmy still has an oxygen mask he has to wear as this has to stay above 95. He is coughing quite a bit and takes the mask off when he does and the oxygen levels drop quite quickly. I'm hoping that they will change the mask for one of those prong type thingies that go up each nostril as this will be much more comfortable for him.
I had to laugh this afternoon. He definitely has a phobia about sleeping in hospital! He started moaning at the sister, telling her that he can't sleep and he hasn't slept for days. She told him that he has been dozing on and off all day and that he will have a good night's sleep tonight but if he can't sleep they will give him a sleeping tablet. And with that he went back to sleep again.
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| Jimmy on Thursday morning still on the ventilator. |
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| Jimmy today while he couldn't sleep hehe |
2015/11/05
Thursday, 5th November
Jimmy was sedated again yesterday evening after I left as he keeps fighting those restraints although this is a lighter sedation. This morning at 7am they turned the adrenaline down from 1 to 0.5 and his blood pressure is a wonderful 119/79. Then at 10am they stopped sedating him again and turned the adrenaline off completely.
He has spent the whole day coming out of sedation and doing everything he can to try and pull the pipes out his mouth. He struggles for about 10 minutes and then gets so tired that he falls asleep but doesn't sleep for very long before he is at it again. By 5pm this evening he was opening his eyes very briefly and turning his head towards me when I spoke to him. I tried to distract him from fighting too and would tell him to just hold my hand. I would then take his hand and he would squeeze mine. The more he was coming to, the more frustrated he was becoming and at times a tear would roll down the side of his face. They had to keep suctioning fluid/mucous from him and also used another suction to remove mucous/saliva from his mouth and at times he even bit the pipe so the sister couldn't move it around. I noticed he has some horrible sores in his mouth again so they have ordered some meds for this. Jimmy had physio today again which exhausted him. He slept for about an hour afterwards.
His white blood cell counts have come up to 4.2, haemoglobin is 8.2, his platelets are 42 and his temperature is 36.5. He did not have any transfusions today nor a Neupogen injection and Dr Du Toit (haematologist) is over the moon with Jimmy's improvement since yesterday.
Prof Wilcox (pulmonary) said that he is very happy with Jimmy's progress and that if they do not have to sedate him tonight they will turn the ventilator onto oxygen only at 10am tomorrow morning to test his breathing on his own. He is expecting it to be fine in which case they will extubate (remove the ventilator).
Today was very exhausting as I spent the whole day trying to calm him down an re-assure him. Jimmy is also exhausted from all the fighting and this makes him cough too, which he can't do with the pipes in his mouth but his body still makes the motion of coughing.
Let's hope that he comes further out of sedation in the next while so that he can understand that his arms are tied down and he has a pipes down his throat and hopefully he will be more relaxed.
PS. 8:46pm - I just phoned to check up on him and they have had to sedate him again as he is just getting too tired. So......round 2 tomorrow. The sister says he should come out of sedation at about 5pm tomorrow evening and then they will have to see how it goes overnight again before they can consider doing the breathing test on Saturday morning.
He has spent the whole day coming out of sedation and doing everything he can to try and pull the pipes out his mouth. He struggles for about 10 minutes and then gets so tired that he falls asleep but doesn't sleep for very long before he is at it again. By 5pm this evening he was opening his eyes very briefly and turning his head towards me when I spoke to him. I tried to distract him from fighting too and would tell him to just hold my hand. I would then take his hand and he would squeeze mine. The more he was coming to, the more frustrated he was becoming and at times a tear would roll down the side of his face. They had to keep suctioning fluid/mucous from him and also used another suction to remove mucous/saliva from his mouth and at times he even bit the pipe so the sister couldn't move it around. I noticed he has some horrible sores in his mouth again so they have ordered some meds for this. Jimmy had physio today again which exhausted him. He slept for about an hour afterwards.
His white blood cell counts have come up to 4.2, haemoglobin is 8.2, his platelets are 42 and his temperature is 36.5. He did not have any transfusions today nor a Neupogen injection and Dr Du Toit (haematologist) is over the moon with Jimmy's improvement since yesterday.
Prof Wilcox (pulmonary) said that he is very happy with Jimmy's progress and that if they do not have to sedate him tonight they will turn the ventilator onto oxygen only at 10am tomorrow morning to test his breathing on his own. He is expecting it to be fine in which case they will extubate (remove the ventilator).
Today was very exhausting as I spent the whole day trying to calm him down an re-assure him. Jimmy is also exhausted from all the fighting and this makes him cough too, which he can't do with the pipes in his mouth but his body still makes the motion of coughing.
Let's hope that he comes further out of sedation in the next while so that he can understand that his arms are tied down and he has a pipes down his throat and hopefully he will be more relaxed.
PS. 8:46pm - I just phoned to check up on him and they have had to sedate him again as he is just getting too tired. So......round 2 tomorrow. The sister says he should come out of sedation at about 5pm tomorrow evening and then they will have to see how it goes overnight again before they can consider doing the breathing test on Saturday morning.
2015/11/04
Wednesday, 4th November
MY HEART IS OVERFLOWING WITH HAPPINESS....
The first lot of good news was this morning when the sister told me that Jimmy's temperature had dropped overnight to 36,5. And there I was praying that he had turned the corner.
And turn the corner he has! They turned off his sedation this morning at 10am. Because he has been so heavily sedated since Sunday they expected him to come out of sedation late tonight or early tomorrow morning. They also turned the adrenaline down from 3 to 1 and his blood pressure is holding. Not perfect yet but acceptable for his condition which is wonderful news.
Just before 5pm I went and stood next to him and held his hand and told him I was there and that I love him so much and he has to be strong and then he moved and tried to open his eyes. He lifted his other arm out from under the sheet and let go of my hand and tried to straight away pull his pipes out. The machines around him all started beeping and I nearly had a hard attack but I couldn't stop smiling. The sister told me to hold down his arms. She said he isn't completely out of sedation yet but he is reacting to my voice and can feel that there is something down his throat. Jimmy started to cough but he can't cough with the pipe down his throat so they had to suction everything out his mouth that was coming up with the pressure of his body trying to cough. Sister Thandi asked me not to talk so that she could try and relax him. She asked me to go call another sister and then they explained that they would need to tie him down in order to stop him pulling out the pipes. I didn't want to see him tied down and struggling so I told her I would leave and see her in the morning. As I walked out I could hear her telling him "You like to fight me Mr Smith...you need to relax....and in the morning your wife will be back. Your family love you."
So....at the moment we are still not out of the woods but I am just so relieved that he has come out of sedation. They will sedate him again now but it will not be as heavily as before. Each morning at 6am they will stop the sedation for an hour and then the ventilator will be changed from breathing for him to just oxygen and they will ascertain whether or not he can breath properly on his own. If he can't then they will sedate him again and carry on trying each morning until he can breath on his own.
He is also not over the pneumonia yet nor the septicaemia but a good sign is that his blood pressure and temperature are coming back to normal. His white blood cell count, haemoglobin and platelets have also starting coming up now, I will have to confirm these numbers in tomorrow's update.
Even if he needs to be sedated for another day or two we know now his body is getting stronger and as this happens he will improve everyday.
As I sit here and type I feel myself going from total euphoria to getting very emotional about this all but I must say it does feel better to be crying from happiness rather than shear desperation.
As you all know we lost a dear friend to this exact same diagnoses in ICU earlier this year. I have forced myself to be strong again but it has been hell inside my heart. I was terrified that Jimmy wouldn't wake up. I love this man so much and he must know that he can never give up on me.
The first lot of good news was this morning when the sister told me that Jimmy's temperature had dropped overnight to 36,5. And there I was praying that he had turned the corner.
And turn the corner he has! They turned off his sedation this morning at 10am. Because he has been so heavily sedated since Sunday they expected him to come out of sedation late tonight or early tomorrow morning. They also turned the adrenaline down from 3 to 1 and his blood pressure is holding. Not perfect yet but acceptable for his condition which is wonderful news.
Just before 5pm I went and stood next to him and held his hand and told him I was there and that I love him so much and he has to be strong and then he moved and tried to open his eyes. He lifted his other arm out from under the sheet and let go of my hand and tried to straight away pull his pipes out. The machines around him all started beeping and I nearly had a hard attack but I couldn't stop smiling. The sister told me to hold down his arms. She said he isn't completely out of sedation yet but he is reacting to my voice and can feel that there is something down his throat. Jimmy started to cough but he can't cough with the pipe down his throat so they had to suction everything out his mouth that was coming up with the pressure of his body trying to cough. Sister Thandi asked me not to talk so that she could try and relax him. She asked me to go call another sister and then they explained that they would need to tie him down in order to stop him pulling out the pipes. I didn't want to see him tied down and struggling so I told her I would leave and see her in the morning. As I walked out I could hear her telling him "You like to fight me Mr Smith...you need to relax....and in the morning your wife will be back. Your family love you."
So....at the moment we are still not out of the woods but I am just so relieved that he has come out of sedation. They will sedate him again now but it will not be as heavily as before. Each morning at 6am they will stop the sedation for an hour and then the ventilator will be changed from breathing for him to just oxygen and they will ascertain whether or not he can breath properly on his own. If he can't then they will sedate him again and carry on trying each morning until he can breath on his own.
He is also not over the pneumonia yet nor the septicaemia but a good sign is that his blood pressure and temperature are coming back to normal. His white blood cell count, haemoglobin and platelets have also starting coming up now, I will have to confirm these numbers in tomorrow's update.
Even if he needs to be sedated for another day or two we know now his body is getting stronger and as this happens he will improve everyday.
As I sit here and type I feel myself going from total euphoria to getting very emotional about this all but I must say it does feel better to be crying from happiness rather than shear desperation.
As you all know we lost a dear friend to this exact same diagnoses in ICU earlier this year. I have forced myself to be strong again but it has been hell inside my heart. I was terrified that Jimmy wouldn't wake up. I love this man so much and he must know that he can never give up on me.
Wednesday, 4th November
I thought that Jimmy somehow looked different yesterday, more at peace as his face seemed to be more relaxed. And then I doubt myself and think maybe it's because I am getting used to seeing him they way he is.
There were still no further changes yesterday and his temperature stayed up during the day. My thoughts were that maybe we need to see the positive in this, in that it was day 6 and Jimmy had not got any worse......he is doing a sterling job of hanging in there.
The haematologist discussed possibly changing or adding another antibiotic today and was going to chat this through with Prof Novitzky so I will hear today what was decided.
The good news this morning is that over night his temperature came down to 36,5. A true glimmer of hope and let's pray that from here it is only forward.
Thank you again for all your messages. Apologies that I have not replied to them all but the support means so much and so does all your love and care.
There were still no further changes yesterday and his temperature stayed up during the day. My thoughts were that maybe we need to see the positive in this, in that it was day 6 and Jimmy had not got any worse......he is doing a sterling job of hanging in there.
The haematologist discussed possibly changing or adding another antibiotic today and was going to chat this through with Prof Novitzky so I will hear today what was decided.
The good news this morning is that over night his temperature came down to 36,5. A true glimmer of hope and let's pray that from here it is only forward.
Thank you again for all your messages. Apologies that I have not replied to them all but the support means so much and so does all your love and care.
2015/11/03
Tuesday, 3rd November
Jimmy is still on the ventilator and in a medically induced coma. Yesterday and 3pm his temperature spiked again and this morning there is no further change. His temperature is also still up. The biggest hurdle we face at the moment is that his body needs to fight the pneumonia and septicemia but his white bloods, haemoglobin and platelets are so low they can't.
Jimmy has a whole team of people seeing to him. Prof Novitzky is treating him on the Myeloma side of things and he has a doctor who is seeing to Jimmy. Prof Wilcox who is a pulmonary specialist is also part of the team and he also has a doctor looking after Jimmy as well as the ICU doctor. They have conveyed to me that Jimmy's condition is very serious.
It was wonderful to see the staff from the chemo clinic as well as F4 pop in yesterday to come and see him. That's Jimmy....wherever he goes he makes friends.
I spent the day with him yesterday holding his hand and talking to him and telling him about all your messages and that he needs to be strong because we are all praying for him. I don't know if he can hear me and I keep wishing that he will squeeze me hand or his eyelids will flicker but I know that he has to be resting like this to get better.
Thanks so much for all your support
xx
Jimmy has a whole team of people seeing to him. Prof Novitzky is treating him on the Myeloma side of things and he has a doctor who is seeing to Jimmy. Prof Wilcox who is a pulmonary specialist is also part of the team and he also has a doctor looking after Jimmy as well as the ICU doctor. They have conveyed to me that Jimmy's condition is very serious.
It was wonderful to see the staff from the chemo clinic as well as F4 pop in yesterday to come and see him. That's Jimmy....wherever he goes he makes friends.
I spent the day with him yesterday holding his hand and talking to him and telling him about all your messages and that he needs to be strong because we are all praying for him. I don't know if he can hear me and I keep wishing that he will squeeze me hand or his eyelids will flicker but I know that he has to be resting like this to get better.
Thanks so much for all your support
xx
2015/11/01
Sunday, 1st November
Jimmy had a better day on Saturday. His temperature remained constant around 36,2 and 36,5. There was a slight improvement in his white blood cell count and Prof said that he was looking better. He was prescribed some Neupogen injections which is what was used to boost his white blood cell production when he was in F4 for his stem cell transplant. Prof also said he would have a platelet transfusion on Sunday.
As he couldn't sleep the doctor said he would tell the sister to give him a sleeping tablet and Jimmy was looking forward to a good nights sleep. He has been nil per mouth since he was admitted on Thursday and extremely thirsty so Prof agreed to him having fluids but still no food. Jimmy's breathing was very shallow and he was quite breathless too, finding it difficult to string a sentence together.
During the night he took another turn and could not breath properly on his own so they had to intubate him.
As I stood beside his bed today holding his hand and wishing and hoping that he knew I was there I couldn't help thinking that the one thing he has moaned about since he was admitted is that he is so extremely tired but he can't sleep and now he is in a medically induced coma and the ventilator is doing his breathing for him and at last he can sleep.
I hope his body uses the time to rest and get strong...
As he couldn't sleep the doctor said he would tell the sister to give him a sleeping tablet and Jimmy was looking forward to a good nights sleep. He has been nil per mouth since he was admitted on Thursday and extremely thirsty so Prof agreed to him having fluids but still no food. Jimmy's breathing was very shallow and he was quite breathless too, finding it difficult to string a sentence together.
During the night he took another turn and could not breath properly on his own so they had to intubate him.
As I stood beside his bed today holding his hand and wishing and hoping that he knew I was there I couldn't help thinking that the one thing he has moaned about since he was admitted is that he is so extremely tired but he can't sleep and now he is in a medically induced coma and the ventilator is doing his breathing for him and at last he can sleep.
I hope his body uses the time to rest and get strong...