Dear everyone,
We spent a considerable amount of yesterday day at the hôpital de jour. There was a lot to cover as Steven needed his Foscavir transfusion, plus platelets, x-ray, various examinations and his central line cleansed and dressed. It all takes time.
We started out with Steven looking a little flushed and with a temperature of 37.7˚ - always a worry. There was a doctor we hadn't dealt with before doing the rounds today, a Dr. Rocha. He is a really nice and informative fellow, but unfortunately is off to Milwaukee for a year, so that was the first and last we'll see of him. The news was mixed.
Dr. Rocha was concerned that the amount of painkiller being consumed was not having an adequate impact on the back pain. He prescribed a medication to reinforce bone structure and also advocated a scan during next week to look specifically at the spine. As we know, corticosteroids have a very negative impact upon bone strength and health: as a result, suspicion now is shifting away from the muscles as being the source of the discomfort.
More disturbing news was that the blood draw yesterday showed that Steven has some inflammation in his blood. They reason that this is caused by a new infection brewing. It is not known what this infection may be, but the trick, as usual, is to 'nip it in the bud'. Consequently, further antibiotics have been added to the daily raft of drugs being consumed.
The herpes is still present and treatment needs to continue.
When queried, Dr. Rocha felt that Steven is some time away from being released back to Brussels. His feeling was that there is not enough experience in Brussels in dealing with double cord blood grafts to provide an expert post transplant follow up for Steven. He also outlined that Steven will need to be graft versus host disease free (not a problem at the moment), have no infection, and be producing his own haemoglobin before they will consider freeing him for a return home. It looks like we may be in for an even lengthier stay here. Obviously, Rocha's opinion will need to be verified by Prof. Socié, but quite frankly, we are not really surprised.
In the meantime, Steven's blood counts have again received an almighty blow, probably due to the mysterious infection which has been gathering force in his system. The white count has dropped to 1,800, with neutrophils of 1,260. Hopefully, his new round of antibiotics will perform wonders and Steven's counts, like the phoenix, will rise again magnificently.
Today, Steven is looking better and seems to be a little more limber in his body mobility. Yesterday, he went for his first walk outdoors since his hospitalisation. We hope to follow this up by plenty of alfresco excursions this week. Let's hope the weather becomes a bit more clement. All grey, with showers, here at the moment.
Have a relaxing weekend,
Evelyn, Matthew and Steven
Saturday, 29 September 2007
Thursday, 27 September 2007
DAY 92
Dear everyone,
Well, the highest Steven's temperature reached today was 37.3˚. The other two readings were both 37˚. Good for him!
The pain was also slightly better today. I feel that the long rest he had yesterday may have helped a little. The physiotherapist also visited and these exercises are useful to loosen up any tight back muscles - nothing too strenuous, just some gentle stretching.
The blood draw from this morning showed that Steven is low again on platelets and needs another transfusion – they are currently only 9,000. Steven spoke directly to Dr. de Latour this evening who felt it was okay to wait until tomorrow's clinic appointment to receive his platelet top-up. As there is no bleeding, they are not overly concerned. As usual, Steven likes to give the hospital a wide berth as often as possible.
Tomorrow, we are off to the hôpital de jour. They will do a full blood analysis and a complete physical. I'm sure another x-ray or scan will also be in the offing.
We are now approaching the 100 day threshold. Although this benchmark is not written in stone as a release date back to Brussels, it is likely that pretty soon they will do a full battery of tests to evaluate where we are at this point post transplant.
That's about all for the moment. I should probably have more to report tomorrow following Steven's visit to hôpital de jour.
Love as ever,
Evelyn, Matthew and Steven
Well, the highest Steven's temperature reached today was 37.3˚. The other two readings were both 37˚. Good for him!
The pain was also slightly better today. I feel that the long rest he had yesterday may have helped a little. The physiotherapist also visited and these exercises are useful to loosen up any tight back muscles - nothing too strenuous, just some gentle stretching.
The blood draw from this morning showed that Steven is low again on platelets and needs another transfusion – they are currently only 9,000. Steven spoke directly to Dr. de Latour this evening who felt it was okay to wait until tomorrow's clinic appointment to receive his platelet top-up. As there is no bleeding, they are not overly concerned. As usual, Steven likes to give the hospital a wide berth as often as possible.
Tomorrow, we are off to the hôpital de jour. They will do a full blood analysis and a complete physical. I'm sure another x-ray or scan will also be in the offing.
We are now approaching the 100 day threshold. Although this benchmark is not written in stone as a release date back to Brussels, it is likely that pretty soon they will do a full battery of tests to evaluate where we are at this point post transplant.
That's about all for the moment. I should probably have more to report tomorrow following Steven's visit to hôpital de jour.
Love as ever,
Evelyn, Matthew and Steven
Wednesday, 26 September 2007
DAY 91
Dear everyone,
It would seem quite ridiculous that one's degree of calm and happiness should be so strongly affected by the readings of a thermometer. In out home, the correlation between the two is mighty.
Steven was up early this morning in readiness for the HAD arrival. I noticed immediately that he was looking quite flushed. When asked how he felt, the response was that he had a bit of a temperature of 37.7 (the upper ceiling of the normal range being 37.5). Trying to control feelings of alarm, we decided that this was probably nothing to worry about. We would wait for the lunchtime temperature check to verify the reading. The nurse arrived and left, all the while being quite vocal in her view that Urgences should be called immediately. Naturally, this was a situation we didn't want to rush into again as, for sure, he would end up re-hospitalised for monitoring purposes. What to do? We were comforted by the fact that during the last two weeks in hospital, Steven's temperature did jump into the high 37s on at least two occasions, but nothing came of it as it promptly descended. We decided to remain put.
By early afternoon, the temp had decreased to 37.5, and by this evening 37.4. The nurses this evening were satisfied that everything was fine. Relief all round! The worrying thing is that the pain in his back was stronger today and his current medication is now only barely coping. Steven also slept a full five hours throughout the day, which he obviously needed.
Tomorrow, Steven has a midday visit from the physiotherapist. Ideally, this should help the back problem. The HAD nurses will also do a blood draw in order to do a complete blood count in preparation for Steven's appointment at the hôpital de jour which is scheduled for Friday morning at 8:30.
Hopefully, today's temperature high was no more than a glitch and tomorrow holds a better pain-free day in store for Steve.
Love to all,
Evelyn, Matthew and Steven
It would seem quite ridiculous that one's degree of calm and happiness should be so strongly affected by the readings of a thermometer. In out home, the correlation between the two is mighty.
Steven was up early this morning in readiness for the HAD arrival. I noticed immediately that he was looking quite flushed. When asked how he felt, the response was that he had a bit of a temperature of 37.7 (the upper ceiling of the normal range being 37.5). Trying to control feelings of alarm, we decided that this was probably nothing to worry about. We would wait for the lunchtime temperature check to verify the reading. The nurse arrived and left, all the while being quite vocal in her view that Urgences should be called immediately. Naturally, this was a situation we didn't want to rush into again as, for sure, he would end up re-hospitalised for monitoring purposes. What to do? We were comforted by the fact that during the last two weeks in hospital, Steven's temperature did jump into the high 37s on at least two occasions, but nothing came of it as it promptly descended. We decided to remain put.
By early afternoon, the temp had decreased to 37.5, and by this evening 37.4. The nurses this evening were satisfied that everything was fine. Relief all round! The worrying thing is that the pain in his back was stronger today and his current medication is now only barely coping. Steven also slept a full five hours throughout the day, which he obviously needed.
Tomorrow, Steven has a midday visit from the physiotherapist. Ideally, this should help the back problem. The HAD nurses will also do a blood draw in order to do a complete blood count in preparation for Steven's appointment at the hôpital de jour which is scheduled for Friday morning at 8:30.
Hopefully, today's temperature high was no more than a glitch and tomorrow holds a better pain-free day in store for Steve.
Love to all,
Evelyn, Matthew and Steven
Tuesday, 25 September 2007
DAY 90
Dear everyone,
Today has been just so relaxing, it's been great. No galloping to and fro to the hospital!
I know that you'll all be delighted to hear that Steven is feeling really good at the moment. I see improvement even since yesterday. He is moving around very well and seems to have greater mobility now in his back. While in the hospital, he seemed quite stiffened with pain and every movement caused some discomfort, despite the variety of painkillers administered. Of course, he is still taking about three different anti-pain meds during the day, but they are not as strong as the ones used in the hospital. There is still discomfort but not to any degree that's debilitating.
I don't recall if I mentioned this previously, but corticosteroids really increase the appetite for food. Steven could literally eat all day long and has been lucky enough to never really have suffered nausea throughout this lengthy process. Consequently, another plus point in being at home is the constant availability of good food and tasty snacks. After weighing himself this morning, he discovered he was 76kg. This is the heaviest he's ever been in his life! Judging by his facial expression, we didn't know whether to congratulate or commiserate! (In all, a good thing, I feel.) It is also so much easier to balance the sugar/insulin intake at home – his glycemia always seems to go off the rails in hospital, possibly due to the scant nature and awful taste of hospital food.
At the moment, Steven is online on his laptop with music playing in the background – beautifully banal, thank goodness. The nurse has just been, done the drip (aka perfusion/ Christmas tree) and left. Matthew is cooking chicken Marbella for dinner, which is one of Steven's favourite dishes and there is a Liverpool football match online later on. Steven will be glued to that, for sure.
That's all for the moment.
Love as always,
Evelyn, Matthew and Steven
Today has been just so relaxing, it's been great. No galloping to and fro to the hospital!
I know that you'll all be delighted to hear that Steven is feeling really good at the moment. I see improvement even since yesterday. He is moving around very well and seems to have greater mobility now in his back. While in the hospital, he seemed quite stiffened with pain and every movement caused some discomfort, despite the variety of painkillers administered. Of course, he is still taking about three different anti-pain meds during the day, but they are not as strong as the ones used in the hospital. There is still discomfort but not to any degree that's debilitating.
I don't recall if I mentioned this previously, but corticosteroids really increase the appetite for food. Steven could literally eat all day long and has been lucky enough to never really have suffered nausea throughout this lengthy process. Consequently, another plus point in being at home is the constant availability of good food and tasty snacks. After weighing himself this morning, he discovered he was 76kg. This is the heaviest he's ever been in his life! Judging by his facial expression, we didn't know whether to congratulate or commiserate! (In all, a good thing, I feel.) It is also so much easier to balance the sugar/insulin intake at home – his glycemia always seems to go off the rails in hospital, possibly due to the scant nature and awful taste of hospital food.
At the moment, Steven is online on his laptop with music playing in the background – beautifully banal, thank goodness. The nurse has just been, done the drip (aka perfusion/ Christmas tree) and left. Matthew is cooking chicken Marbella for dinner, which is one of Steven's favourite dishes and there is a Liverpool football match online later on. Steven will be glued to that, for sure.
That's all for the moment.
Love as always,
Evelyn, Matthew and Steven
Monday, 24 September 2007
DAY 89
Dear all,
The boy is home! Following discussions with the doctor on duty yesterday, it was announced this morning that he would be released from the pneumology unit at 1pm today. Matthew and I were totally relieved to hear this, as it had become crucial to Steven to get back to the apartment and a more normal daily life. Of course, it is not possible to be ever totally confident in this situation, as we have learned that the best laid plans can go awry at the last minute and hopes can be dashed so quickly, given Steven's current medical status. Seeing really was believing on this occasion, and, boy, was I both happy and relieved to see him standing outside the front door of the apartment. It's been a really long two weeks.
I had remained behind while Matthew went to fetch Steven in order to welcome the HAD team (hôpital à domicile) as it was not clear when they would arrive. We had already received a delivery of some of their equipment toward the end of last week – this consisted of a drip stand and paraphernalia, and an adjustable bedside table. In the end, it wasn't until after we had all had lunch that two nurses, Veronique and Christophe, arrived with further boxes of various meds and more gear. It looks like they mean business! They quickly attached Steven to his perfusion (a much nicer word than drip, I feel) of Foscavir, got him comfortable and then left. At the moment, Steven is sleeping. Christophe will return in one hour to remove the drip and check again on Steven. From today, this routine will unfold several times a day, until the treatment has been effective. I have never heard of a system like this before (maybe I'm just behind the times!) but I have to say, I am impressed. Steven will continue to attend the hospital de jour once weekly for his usual check up and bloodwork.
Although he is delighted to be home, Steven is very tired and becomes exhausted quite easily. We are hoping that this will improve now that he will gain so much more exercise just from moving around the apartment and going about his daily routine independently. He is anxious to have the physiotherapists return to help him regain some muscle tone. Hopefully we can get something organised this week, but it will need to be a gently, gently approach to regaining some fitness and energy this time around. We need to keep in mind that he is still very fragile in his post pneumonia condition.
If there was just some way we could be sure of warding off all future infections and viruses, then maybe we could achieve true peace of mind. However, that's not the reality of this situation. We'll just have to continue to roll with the punches and strive to deal with every new challenge that presents itself as I'm sure there will be many more ahead.
Love to all,
Evelyn, Matthew and Steven
The boy is home! Following discussions with the doctor on duty yesterday, it was announced this morning that he would be released from the pneumology unit at 1pm today. Matthew and I were totally relieved to hear this, as it had become crucial to Steven to get back to the apartment and a more normal daily life. Of course, it is not possible to be ever totally confident in this situation, as we have learned that the best laid plans can go awry at the last minute and hopes can be dashed so quickly, given Steven's current medical status. Seeing really was believing on this occasion, and, boy, was I both happy and relieved to see him standing outside the front door of the apartment. It's been a really long two weeks.
I had remained behind while Matthew went to fetch Steven in order to welcome the HAD team (hôpital à domicile) as it was not clear when they would arrive. We had already received a delivery of some of their equipment toward the end of last week – this consisted of a drip stand and paraphernalia, and an adjustable bedside table. In the end, it wasn't until after we had all had lunch that two nurses, Veronique and Christophe, arrived with further boxes of various meds and more gear. It looks like they mean business! They quickly attached Steven to his perfusion (a much nicer word than drip, I feel) of Foscavir, got him comfortable and then left. At the moment, Steven is sleeping. Christophe will return in one hour to remove the drip and check again on Steven. From today, this routine will unfold several times a day, until the treatment has been effective. I have never heard of a system like this before (maybe I'm just behind the times!) but I have to say, I am impressed. Steven will continue to attend the hospital de jour once weekly for his usual check up and bloodwork.
Although he is delighted to be home, Steven is very tired and becomes exhausted quite easily. We are hoping that this will improve now that he will gain so much more exercise just from moving around the apartment and going about his daily routine independently. He is anxious to have the physiotherapists return to help him regain some muscle tone. Hopefully we can get something organised this week, but it will need to be a gently, gently approach to regaining some fitness and energy this time around. We need to keep in mind that he is still very fragile in his post pneumonia condition.
If there was just some way we could be sure of warding off all future infections and viruses, then maybe we could achieve true peace of mind. However, that's not the reality of this situation. We'll just have to continue to roll with the punches and strive to deal with every new challenge that presents itself as I'm sure there will be many more ahead.
Love to all,
Evelyn, Matthew and Steven
Sunday, 23 September 2007
DAY 88
Dear all,
We were too late returning from the hospital last night to find time to write a communication. As you are all probably aware, outside of emergencies, there are usually few developments over the weekend in St. Louis. As a result, normally, there is little to report.
Steven continues to suffer a lot of discomfort in the middle of his back. They seem to now have this under some control and have certainly reduced the intensity of pain. This has been achieved by administering a ‘lucky dip’ of various painkillers over the past 48 hours. They resorted to trying a morphine injection on Friday evening, as it had been such a difficult day for Steven – the first time I have ever heard him declare that he was feeling seriously ‘not well’. Of course, morphine does not agree with Steven and causes its own negative effect, so this was not really a viable solution, although it did mean he got to watch the rugby match in some degree of comfort.
Yesterday, Saturday, was better. He is now taking 3-4 different painkillers at various times and this seems to be working effectively for the moment. Steven was in much better form and seemed ‘more himself’, although mobility was still difficult. He had two visitors in the afternoon, which was really nice for him - Romain and Thomas are friends who were in the same residence as Steven, during his first year in Manchester.
Steven remains very agitated to return home by tomorrow and we see no reason why he shouldn’t as long as his temperature remains within the normal range and he has an appropriate pain control regime. Hopefully this plan will work out as, in many ways, he would be more comfortable at home. At the moment, he is getting no exercise in the hospital as he is not allowed outside his room: this is not helping his back muscles which are the source of his discomfort. He needs to get back to exercising and re-building the muscles all over his body as this is the ultimate solution to the pain issue.
I will update again as soon as there is further news.
Love,
Evelyn, Matthew and Steven
We were too late returning from the hospital last night to find time to write a communication. As you are all probably aware, outside of emergencies, there are usually few developments over the weekend in St. Louis. As a result, normally, there is little to report.
Steven continues to suffer a lot of discomfort in the middle of his back. They seem to now have this under some control and have certainly reduced the intensity of pain. This has been achieved by administering a ‘lucky dip’ of various painkillers over the past 48 hours. They resorted to trying a morphine injection on Friday evening, as it had been such a difficult day for Steven – the first time I have ever heard him declare that he was feeling seriously ‘not well’. Of course, morphine does not agree with Steven and causes its own negative effect, so this was not really a viable solution, although it did mean he got to watch the rugby match in some degree of comfort.
Yesterday, Saturday, was better. He is now taking 3-4 different painkillers at various times and this seems to be working effectively for the moment. Steven was in much better form and seemed ‘more himself’, although mobility was still difficult. He had two visitors in the afternoon, which was really nice for him - Romain and Thomas are friends who were in the same residence as Steven, during his first year in Manchester.
Steven remains very agitated to return home by tomorrow and we see no reason why he shouldn’t as long as his temperature remains within the normal range and he has an appropriate pain control regime. Hopefully this plan will work out as, in many ways, he would be more comfortable at home. At the moment, he is getting no exercise in the hospital as he is not allowed outside his room: this is not helping his back muscles which are the source of his discomfort. He needs to get back to exercising and re-building the muscles all over his body as this is the ultimate solution to the pain issue.
I will update again as soon as there is further news.
Love,
Evelyn, Matthew and Steven
Friday, 21 September 2007
DAY 86
Dear everyone,
Steven is still in the hospital. Both doctors, Robin and Nguyen felt that to be really cautious, it would be better if he remained until Monday at least. This really came as no surprise to Matthew and me, but Steven was disappointed as he had hoped to be out of there, by yesterday, Thursday.
There are ongoing difficulties with pain control. This afternoon, Steven was literally wracked by pain in the centre of his back. It was the type of pain that is so strong it spoils the appetite, prevents the ability to concentrate on anything else and really makes it difficult to find a comfortable position. This is very stressful to witness, because as parents, we cannot solve the situation. Meetings with Dr. Robin yesterday, and Dr. Nguyen today, has really not thrown too much light on the situation. They feel that it is muscular in origin and a matter of pain control. The problem is that the current 24 hour infusion pump of Acupan is not sufficient. They are now talking of a subcutaneous analgesic med, which apparently would be stronger.
The physiotherapist was in today. She also feels that the pain is muscular due to wastage of muscle mass and the impact of steroidal swelling. Hot compresses were recommended.
Steven had no temperature today. He received a haemoglobin transfusion in the afternoon. Nobody is worried re the lungs, or the herpes.
We will return to the hospital this evening at around 7:00pm with Steven’s dinner (and the newly acquired hot compresses). We are still producing the evening meal from home, as the hospital food is just too awful for long term survival! Tonight we will also bring enough food for Matthew and myself as we plan to ‘picnic’ together before we watch the Ireland/France rugby match with Steven at 9:00. Let’s hope Ireland have ‘discovered a plot’ by this point – or else we’ll never live it down, surrounded as we are by ‘les francais’!!!
Love to all,
Evelyn, Matthew and Steven
Dear Roman,
Please call me at 33669298994 to arrange your visit to Steven, who should certainly be out of hospital by next weekend.
Steven is still in the hospital. Both doctors, Robin and Nguyen felt that to be really cautious, it would be better if he remained until Monday at least. This really came as no surprise to Matthew and me, but Steven was disappointed as he had hoped to be out of there, by yesterday, Thursday.
There are ongoing difficulties with pain control. This afternoon, Steven was literally wracked by pain in the centre of his back. It was the type of pain that is so strong it spoils the appetite, prevents the ability to concentrate on anything else and really makes it difficult to find a comfortable position. This is very stressful to witness, because as parents, we cannot solve the situation. Meetings with Dr. Robin yesterday, and Dr. Nguyen today, has really not thrown too much light on the situation. They feel that it is muscular in origin and a matter of pain control. The problem is that the current 24 hour infusion pump of Acupan is not sufficient. They are now talking of a subcutaneous analgesic med, which apparently would be stronger.
The physiotherapist was in today. She also feels that the pain is muscular due to wastage of muscle mass and the impact of steroidal swelling. Hot compresses were recommended.
Steven had no temperature today. He received a haemoglobin transfusion in the afternoon. Nobody is worried re the lungs, or the herpes.
We will return to the hospital this evening at around 7:00pm with Steven’s dinner (and the newly acquired hot compresses). We are still producing the evening meal from home, as the hospital food is just too awful for long term survival! Tonight we will also bring enough food for Matthew and myself as we plan to ‘picnic’ together before we watch the Ireland/France rugby match with Steven at 9:00. Let’s hope Ireland have ‘discovered a plot’ by this point – or else we’ll never live it down, surrounded as we are by ‘les francais’!!!
Love to all,
Evelyn, Matthew and Steven
Dear Roman,
Please call me at 33669298994 to arrange your visit to Steven, who should certainly be out of hospital by next weekend.
Wednesday, 19 September 2007
Day 84
Dear all,
We arrived around lunchtime today to find Steven in relatively good form, as the ‘HAD’ coordinator had told him that it was likely he would be released from the hospital tomorrow, and that everything was organised for the ‘hospital at home’. He quickly followed this by informing us that he had had a temperature in the morning and at the lunchtime check ups. Naturally this sent the doctors into a spin of enquiry as to the why and where of the temperature. An x-ray, peripheral (from the arm) and central line blood draws quickly ensued to try to identify a source. We will know nothing about results until tomorrow at least. It’s not likely that he’ll be out of there by tomorrow, I feel.
The Foscavir drip continues. This is a very strong medication with a multitude of side effects, one of which is backache. It can also have a very deleterious effect on the kidneys: as a precaution, he has been taken off the cyclosporine. Steven now has an unceasing infusion pump of acupan (painkiller) to help him cope with the pain. It takes the intensity out of the discomfort but doesn’t banish it completely. He also had awful leg and feet pain today.
By late afternoon, the temperature had disappeared and hadn’t returned by this evening. Steven feels himself that the Foscavir is really working on the herpes, as currently, he cannot see any mucus or white spots in his throat.
We left Steven this evening, watching the Barcelona/Lyon football match.
Hopefully, tomorrow will bring good news.
With love,
Evelyn, Matthew and Steven
We arrived around lunchtime today to find Steven in relatively good form, as the ‘HAD’ coordinator had told him that it was likely he would be released from the hospital tomorrow, and that everything was organised for the ‘hospital at home’. He quickly followed this by informing us that he had had a temperature in the morning and at the lunchtime check ups. Naturally this sent the doctors into a spin of enquiry as to the why and where of the temperature. An x-ray, peripheral (from the arm) and central line blood draws quickly ensued to try to identify a source. We will know nothing about results until tomorrow at least. It’s not likely that he’ll be out of there by tomorrow, I feel.
The Foscavir drip continues. This is a very strong medication with a multitude of side effects, one of which is backache. It can also have a very deleterious effect on the kidneys: as a precaution, he has been taken off the cyclosporine. Steven now has an unceasing infusion pump of acupan (painkiller) to help him cope with the pain. It takes the intensity out of the discomfort but doesn’t banish it completely. He also had awful leg and feet pain today.
By late afternoon, the temperature had disappeared and hadn’t returned by this evening. Steven feels himself that the Foscavir is really working on the herpes, as currently, he cannot see any mucus or white spots in his throat.
We left Steven this evening, watching the Barcelona/Lyon football match.
Hopefully, tomorrow will bring good news.
With love,
Evelyn, Matthew and Steven
Tuesday, 18 September 2007
DAY 83
Dear everyone,
Apart from having to endure the dreadful tedium of everyday hospital life, all is well with Steven. He was in slightly better form today and still has his sights firmly set on his exit date from Coquelicot.
Matthew and I bumped into Dr. Nguyen this afternoon. She is so pleasant and just wonderfully informative in all her interactions. She expressed the opinion that they are quite happy with how the pneumonia is being resolved, and that they need a few more days of administering antibiotics to be sure of really clearing things up. The decisions regarding the herpes treatment comes directly from the Trèfle 3 team and they are waiting on results to assure them that the new medication (Foscavir) is working.
It was also explained that once Steven is released home, his treatment will be administered and monitored, at home, within a scheme they call ‘hôpital à domicile’ (HAD for short) – this literally means ‘hospital at home’. Apparently there is a team of nurses that operate directly out of St. Louis, who do home visits, and continue the treatment on the same basis as in the hospital – with drips, monitors etc. The plan is that this squad will attend Steven at home 2-3 times daily to deliver his treatment programme. That should be interesting!! They are hoping to have this set up before the weekend, but cannot be certain as this takes serious coordination, as you can imagine.
Steven continues to have a lot of severe back pain, which concerns us a lot as this now seems to require round the clock painkillers. He tends to under-report his symptoms to avoid staying ‘inside’ longer than necessary. A delicate situation!
That’s the news bulletin from Paris for today.
Love to all,
Evelyn, Matthew and Steven
Apart from having to endure the dreadful tedium of everyday hospital life, all is well with Steven. He was in slightly better form today and still has his sights firmly set on his exit date from Coquelicot.
Matthew and I bumped into Dr. Nguyen this afternoon. She is so pleasant and just wonderfully informative in all her interactions. She expressed the opinion that they are quite happy with how the pneumonia is being resolved, and that they need a few more days of administering antibiotics to be sure of really clearing things up. The decisions regarding the herpes treatment comes directly from the Trèfle 3 team and they are waiting on results to assure them that the new medication (Foscavir) is working.
It was also explained that once Steven is released home, his treatment will be administered and monitored, at home, within a scheme they call ‘hôpital à domicile’ (HAD for short) – this literally means ‘hospital at home’. Apparently there is a team of nurses that operate directly out of St. Louis, who do home visits, and continue the treatment on the same basis as in the hospital – with drips, monitors etc. The plan is that this squad will attend Steven at home 2-3 times daily to deliver his treatment programme. That should be interesting!! They are hoping to have this set up before the weekend, but cannot be certain as this takes serious coordination, as you can imagine.
Steven continues to have a lot of severe back pain, which concerns us a lot as this now seems to require round the clock painkillers. He tends to under-report his symptoms to avoid staying ‘inside’ longer than necessary. A delicate situation!
That’s the news bulletin from Paris for today.
Love to all,
Evelyn, Matthew and Steven
Monday, 17 September 2007
DAY 82
Dear everyone,
All continues to be stable with Steven at the moment. He had a few rounds of doctors’ visits today. While they are all satisfied that there is nothing to be excessively worried about, there are still some outstanding problems with both the pneumonia and the herpes which resulted in their decision to retain him in the hospital for a further period of time.
They need to continue with the antibiotics for the pneumonia infection for several more days. As the herpes now appears to be of more concern, they have changed his medication from Zovirax to Foscavir – we believe this is the same drug which resolved his lung herpes when he was in Trèfle. Hopefully, it will achieve the same success this time round. As this treatment needs to be delivered intravenously, at least initially, this was the primary rationale for Steven’s retention in the hospital.
There is still considerable back pain, and the dosage of painkillers to counteract this is still quite high. The doctors believe this to be a consequence of the combination of pneumonia and a stressed back posture – Steven has always had difficulties with his back as a result of childhood scoliosis: swelling resulting from the high steroid intake has not helped this at all!
Judging by his mood, Steven is feeling a little ‘down’ today and more than frustrated. He is desperately anxious to get out of hospital – who can blame him?
The good news is that his white cells are now circa 5,000, with neutrophils at around 4,000. His haemoglobin is steady at 8.6, and he will have a platelet transfusion later tonight. We were more than relieved to hear these results, as you can well imagine.
Ellen returned to Bruxelles yesterday evening and will depart for Liverpool tomorrow evening, where her Zoology degree beckons. Feargal, on the other hand, returned to Manchester this evening to continue his studies in Sports Management. Such scholarship! Here’s wishing them both a great academic year and hopefully it won’t be too long before we see them again!
Love to all,
Evelyn, Matthew and Steven
All continues to be stable with Steven at the moment. He had a few rounds of doctors’ visits today. While they are all satisfied that there is nothing to be excessively worried about, there are still some outstanding problems with both the pneumonia and the herpes which resulted in their decision to retain him in the hospital for a further period of time.
They need to continue with the antibiotics for the pneumonia infection for several more days. As the herpes now appears to be of more concern, they have changed his medication from Zovirax to Foscavir – we believe this is the same drug which resolved his lung herpes when he was in Trèfle. Hopefully, it will achieve the same success this time round. As this treatment needs to be delivered intravenously, at least initially, this was the primary rationale for Steven’s retention in the hospital.
There is still considerable back pain, and the dosage of painkillers to counteract this is still quite high. The doctors believe this to be a consequence of the combination of pneumonia and a stressed back posture – Steven has always had difficulties with his back as a result of childhood scoliosis: swelling resulting from the high steroid intake has not helped this at all!
Judging by his mood, Steven is feeling a little ‘down’ today and more than frustrated. He is desperately anxious to get out of hospital – who can blame him?
The good news is that his white cells are now circa 5,000, with neutrophils at around 4,000. His haemoglobin is steady at 8.6, and he will have a platelet transfusion later tonight. We were more than relieved to hear these results, as you can well imagine.
Ellen returned to Bruxelles yesterday evening and will depart for Liverpool tomorrow evening, where her Zoology degree beckons. Feargal, on the other hand, returned to Manchester this evening to continue his studies in Sports Management. Such scholarship! Here’s wishing them both a great academic year and hopefully it won’t be too long before we see them again!
Love to all,
Evelyn, Matthew and Steven
Saturday, 15 September 2007
DAY 80
Dear everyone,
Not a lot to report today. As you all well know by now, the Hôpital St. Louis is rather a quiet place at the weekend.
Steven was again in good form when we saw him at around lunchtime. During the morning, he had had another visit from the ear, nose and throat specialist, who reiterated the need to continue with the current treatment (transfused Zovirax 350) for the herpes until at least Monday. At this point they will be in a better position to judge how effective it has been. If things do not improve with his throat, they will try an alternative medication. This ENT examination was quickly followed by a brief consultation with the head of the pneumology service, a Dr. Bergeron, who explained that Steven will not be released from hospital until they feel they have the herpes under control: nonetheless, they are still projecting a Tuesday discharge.
Everything else remains stable. Since last weekend, Steven had been experiencing a lot of tremors in his hands that seemed to be affecting accurate coordination: today this seems to have disappeared. This may be owing to the fact that they have further decreased his steroid intake, which is always a good thing. He continues to rely on painkiller (Acupan) to relieve his back pain, which has improved, but not disappeared.
That’s all for this evening. We are looking forward to watching the Irish/Georgian rugby match later on, at nine. Let’s hope they make a better fist of this than the Namibian display.
Love to all,
Evelyn, Matthew, Steven and Ellen
Not a lot to report today. As you all well know by now, the Hôpital St. Louis is rather a quiet place at the weekend.
Steven was again in good form when we saw him at around lunchtime. During the morning, he had had another visit from the ear, nose and throat specialist, who reiterated the need to continue with the current treatment (transfused Zovirax 350) for the herpes until at least Monday. At this point they will be in a better position to judge how effective it has been. If things do not improve with his throat, they will try an alternative medication. This ENT examination was quickly followed by a brief consultation with the head of the pneumology service, a Dr. Bergeron, who explained that Steven will not be released from hospital until they feel they have the herpes under control: nonetheless, they are still projecting a Tuesday discharge.
Everything else remains stable. Since last weekend, Steven had been experiencing a lot of tremors in his hands that seemed to be affecting accurate coordination: today this seems to have disappeared. This may be owing to the fact that they have further decreased his steroid intake, which is always a good thing. He continues to rely on painkiller (Acupan) to relieve his back pain, which has improved, but not disappeared.
That’s all for this evening. We are looking forward to watching the Irish/Georgian rugby match later on, at nine. Let’s hope they make a better fist of this than the Namibian display.
Love to all,
Evelyn, Matthew, Steven and Ellen
Friday, 14 September 2007
DAY 79
Dear everyone,
Firstly, Steven continues to be in good form and positive mood. We haven’t had a whole lot of further developments today, so I will provide a brief update.
The central line was re-inaugurated last night, which was very good news for Steven. His arms have acted as pin cushions for so long now that nurses find it very difficult to find a vein and need to do a lot of painful poking before success is achieved. He was very pleased to gain increased mobility, at least around his room, as a result.
Yesterday’s x-ray showed an improvement in the pneumonia. They have not been able to identify the particular bacteria involved, but the fibreoscopy also showed that there was less to worry about than previously considered. Dr. Robin feels that the antibiotics have already done a good job and that Steven’s neutrophils had also jumped to his defence to help with the healing. Obviously, it is not over yet, and he is still on intravenous antibiotics to clear up the problem.
More worrisome, perhaps, is the fact that they have now identified traces of the herpes virus in his blood. They have added a new intravenous antiviral medication to battle this. As nobody in the hospital seems overly concerned about this, I guess we shouldn’t be either. The opinion is that it is still very far from being disseminated through his system, as this would be potentially very dangerous.
They are talking about a possible discharge from the hospital for next Tuesday and have explained that this would entail having his treatment continued at home. (The return of the biker nurse, methinks!) This is the one item of news that Steven seized upon and for him it clouds the significance of everything else. He cannot wait to get his heels out the door!
Medically, everything else appears to be stable. He has no temperature and his blood pressure and oxygen levels are also normal. The good news was that his white cells have bounced up to 2,500 today, which is marvelous as initially nobody was providing any guarantees about their spontaneous recovery. His isolation restriction has also been reduced – visitors now only need to wear masks, as opposed to the full gown, bonnet, gloves, bootees etc. Eating habits remain unabated.
That’s all for the moment until tomorrow…….
Evelyn, Matthew, Steven and Ellen
Firstly, Steven continues to be in good form and positive mood. We haven’t had a whole lot of further developments today, so I will provide a brief update.
The central line was re-inaugurated last night, which was very good news for Steven. His arms have acted as pin cushions for so long now that nurses find it very difficult to find a vein and need to do a lot of painful poking before success is achieved. He was very pleased to gain increased mobility, at least around his room, as a result.
Yesterday’s x-ray showed an improvement in the pneumonia. They have not been able to identify the particular bacteria involved, but the fibreoscopy also showed that there was less to worry about than previously considered. Dr. Robin feels that the antibiotics have already done a good job and that Steven’s neutrophils had also jumped to his defence to help with the healing. Obviously, it is not over yet, and he is still on intravenous antibiotics to clear up the problem.
More worrisome, perhaps, is the fact that they have now identified traces of the herpes virus in his blood. They have added a new intravenous antiviral medication to battle this. As nobody in the hospital seems overly concerned about this, I guess we shouldn’t be either. The opinion is that it is still very far from being disseminated through his system, as this would be potentially very dangerous.
They are talking about a possible discharge from the hospital for next Tuesday and have explained that this would entail having his treatment continued at home. (The return of the biker nurse, methinks!) This is the one item of news that Steven seized upon and for him it clouds the significance of everything else. He cannot wait to get his heels out the door!
Medically, everything else appears to be stable. He has no temperature and his blood pressure and oxygen levels are also normal. The good news was that his white cells have bounced up to 2,500 today, which is marvelous as initially nobody was providing any guarantees about their spontaneous recovery. His isolation restriction has also been reduced – visitors now only need to wear masks, as opposed to the full gown, bonnet, gloves, bootees etc. Eating habits remain unabated.
That’s all for the moment until tomorrow…….
Evelyn, Matthew, Steven and Ellen
Thursday, 13 September 2007
DAY 78
Dear everyone,
Ellen arrived, as planned, midday, yesterday. We had a quick lunch and then moved on to the hospital, where Steven was due to have his fibreoscopy. By the time we got to his room, we had just missed him and he had already been delivered downstairs to the pneumology clinic. We arrived down and expected a long wait: however, this time things went fairly swiftly – I guess the more often one undergoes these unpleasant procedures, the easier they become. When we were called in, Steven was sitting in a wheelchair and all ready to be delivered back up to Coquelicot 5. Well, he was just looking so good! Nothing at all like how ill he had been the previous two days. Major relief all round, as you can imagine. Naturally, he was delighted to see Ellen.
Back upstairs, Matthew and I arranged to meet with Dr. Nguyen (pronounced en-gee-en) who is the pneumologist following Steven’s case in Coquelicot – she had already examined him while he was in Urgences. This lady is just brilliant – a bit of a tour de force of medical prowess, if you ask me, and wonderfully nice. She explained that, based upon the scan evidence, their opinion is that Steven most likely has bacterial pneumonia in his upper left lung. They were waiting for the results from the bronchoscopy to fully confirm this. Her feeling was that there might also be some residual infection in his central line which would have contributed to the temperature hike, and they were investigating this. She also outlined that Steven would appear to have herpes in his throat. This is visible as white spots and mucus at the sides and back of his throat. This, apparently, is not a major concern and they are already treating this with mouthwash and an anti-fungal medication.
Today, Steven was back to his usual self (the king of the rebound, don’t you know!) and in quite good form. He is very frustrated that he still cannot use his central line and the antibiotics are still being transfused into veins – he literally doesn’t have a vein left in his arms. He is eating very well and the pain in his back is improving and quite under control. More importantly, he hasn’t had a fever since Monday evening. He cannot use his computer as there is no wireless coverage in Coquelicot, so this is also irritating for him, but he does have his PS3 and DVDs on demand to amuse himself and Ellen.
This afternoon, Matthew and I spoke with Dr. Robin who is the liaison for Steven between Trèfle 3 and pneumology. She corroborated the need to wait, possibly until Friday, before they are assured of the safety of re-employing the central line. Like Dr. Nguyen, she is not worried about the throat herpes either.
The ugly memory of Dante’s inferno (aka Urgences) is now well and truly behind us. Steven is very comfortable where he is and we are all confident that he is receiving excellent medical attention. We await the results of the bronchoscopy which may dictate a change in his antibiotic treatment.
In the meantime, love to all and thanks to each one of you for all the immense support you provide.
Evelyn, Matthew, Steven and Ellen
Ellen arrived, as planned, midday, yesterday. We had a quick lunch and then moved on to the hospital, where Steven was due to have his fibreoscopy. By the time we got to his room, we had just missed him and he had already been delivered downstairs to the pneumology clinic. We arrived down and expected a long wait: however, this time things went fairly swiftly – I guess the more often one undergoes these unpleasant procedures, the easier they become. When we were called in, Steven was sitting in a wheelchair and all ready to be delivered back up to Coquelicot 5. Well, he was just looking so good! Nothing at all like how ill he had been the previous two days. Major relief all round, as you can imagine. Naturally, he was delighted to see Ellen.
Back upstairs, Matthew and I arranged to meet with Dr. Nguyen (pronounced en-gee-en) who is the pneumologist following Steven’s case in Coquelicot – she had already examined him while he was in Urgences. This lady is just brilliant – a bit of a tour de force of medical prowess, if you ask me, and wonderfully nice. She explained that, based upon the scan evidence, their opinion is that Steven most likely has bacterial pneumonia in his upper left lung. They were waiting for the results from the bronchoscopy to fully confirm this. Her feeling was that there might also be some residual infection in his central line which would have contributed to the temperature hike, and they were investigating this. She also outlined that Steven would appear to have herpes in his throat. This is visible as white spots and mucus at the sides and back of his throat. This, apparently, is not a major concern and they are already treating this with mouthwash and an anti-fungal medication.
Today, Steven was back to his usual self (the king of the rebound, don’t you know!) and in quite good form. He is very frustrated that he still cannot use his central line and the antibiotics are still being transfused into veins – he literally doesn’t have a vein left in his arms. He is eating very well and the pain in his back is improving and quite under control. More importantly, he hasn’t had a fever since Monday evening. He cannot use his computer as there is no wireless coverage in Coquelicot, so this is also irritating for him, but he does have his PS3 and DVDs on demand to amuse himself and Ellen.
This afternoon, Matthew and I spoke with Dr. Robin who is the liaison for Steven between Trèfle 3 and pneumology. She corroborated the need to wait, possibly until Friday, before they are assured of the safety of re-employing the central line. Like Dr. Nguyen, she is not worried about the throat herpes either.
The ugly memory of Dante’s inferno (aka Urgences) is now well and truly behind us. Steven is very comfortable where he is and we are all confident that he is receiving excellent medical attention. We await the results of the bronchoscopy which may dictate a change in his antibiotic treatment.
In the meantime, love to all and thanks to each one of you for all the immense support you provide.
Evelyn, Matthew, Steven and Ellen
Wednesday, 12 September 2007
DAY 77
Dear everyone,
I can only describe the last couple of days as being ‘horrendous’.
Aideen arrived Saturday morning and all was going well with Steven. We all did a very pleasant walk along the Bassin de la Villette (canal side) in the afternoon – warm, sunny weather – everyone happy.
By Sunday, Steven’s backache had really increased and by evening he had a slight temperature. We called the hospital and talked to the haematologist on duty who said that we could wait until Monday morning, or go to Urgences (emergency) that evening, to have him checked out. Steven was definitely in favour of the ‘wait and see’ option, so we did. Monday morning - the pain was intolerable - sleepless night, roaring temperature, we all headed off to Urgences.
At arrival, they were waiting for him and he was immediately strapped into drips and wired to monitors to control the pain and identify the source of the problem. Blood was drawn for analyis; then the waiting began. With Steven pumping sweat, ice bags were applied to his body to try to cut the temperature; he cannot stay awake. We wait all morning as the laboratory seems to have fallen into a state of stasis and was not issuing results for any of the emergency patients. We were told that Steven could not be admitted to any suitable section of the hospital as there were no beds available; therefore he had to remain in Urgences overnight. He was allocated a room, which I can only describe as ‘dirty’, too hot and unventilated with no windows, no bathroom facilities etc. Eventually, we were informed that his white cell count had dropped drastically to 1,200, with neutrophils of 800 – this was due to a brewing infection. Matthew and I stayed in the hospital until 11:30pm – Aideen had had to return to Dublin during the evening. Steven looked really sick and exhausted, and was placed on oxygen, but thankfully stayed asleep almost all the time.
Tuesday dawned. Matthew and I rushed to the hospital early and go straight to see Prof. Socié to find out more, outline our perception of the lack of hygiene in Urgences, and try to get things moving quickly. He was already aware of the situation, but felt that Steven had to remain in hospital at all costs, yet agreed that the Urgences environment was totally unsuitable, with Steven’s very low immunity. He promised to go to Urgences himself and try to see what could be done.
In the meantime, many doctors had come and gone to visit Steven in Urgences and perform various examinations. White count had dropped to 1,000. The doctors from Trèfle and from pneumology suspected that there is a lung infection but this would need further investigation.
By 5:30pm, Steven was provided with a room in Cocquelicot (poppy) 5 which is the section for pneumology and thoracic oncology. As it turns out, this unit has been newly renovated and is like 5 star accommodation in comparison to the rest of the hospital, so no worries regarding a bacteria laden setting; everything is pristine and spotless.
In the middle of all this, Steven is more than upset and downhearted to be back in hospital, especially as Ellen arrives from Brussels today and this will be her last visit before she returns to university in Liverpool. It is just so disappointing to see those hard fought for, so precious, white cells being wiped out so easily.
As we left Steven last night, he was just beginning to find some level of acceptance of the situation. He had a scan after we left, at around tennish. He was informed that another bronchoscopy will be performed today to scope his lung and see what’s happening – as if he didn’t feel miserable enough!
Anyway, that’s the story so far. Steven now needs all the prayers, good will, positive thoughts everyone can muster to be sent in his direction, and fast. We always knew that post transplant, things can change for the worse in a heartbeat but this doesn’t make it any easier to accept or deal with.
Rest assured that I will now post everyday, to keep everyone updated of all new developments.
Love to all,
Evelyn and Matthew
I can only describe the last couple of days as being ‘horrendous’.
Aideen arrived Saturday morning and all was going well with Steven. We all did a very pleasant walk along the Bassin de la Villette (canal side) in the afternoon – warm, sunny weather – everyone happy.
By Sunday, Steven’s backache had really increased and by evening he had a slight temperature. We called the hospital and talked to the haematologist on duty who said that we could wait until Monday morning, or go to Urgences (emergency) that evening, to have him checked out. Steven was definitely in favour of the ‘wait and see’ option, so we did. Monday morning - the pain was intolerable - sleepless night, roaring temperature, we all headed off to Urgences.
At arrival, they were waiting for him and he was immediately strapped into drips and wired to monitors to control the pain and identify the source of the problem. Blood was drawn for analyis; then the waiting began. With Steven pumping sweat, ice bags were applied to his body to try to cut the temperature; he cannot stay awake. We wait all morning as the laboratory seems to have fallen into a state of stasis and was not issuing results for any of the emergency patients. We were told that Steven could not be admitted to any suitable section of the hospital as there were no beds available; therefore he had to remain in Urgences overnight. He was allocated a room, which I can only describe as ‘dirty’, too hot and unventilated with no windows, no bathroom facilities etc. Eventually, we were informed that his white cell count had dropped drastically to 1,200, with neutrophils of 800 – this was due to a brewing infection. Matthew and I stayed in the hospital until 11:30pm – Aideen had had to return to Dublin during the evening. Steven looked really sick and exhausted, and was placed on oxygen, but thankfully stayed asleep almost all the time.
Tuesday dawned. Matthew and I rushed to the hospital early and go straight to see Prof. Socié to find out more, outline our perception of the lack of hygiene in Urgences, and try to get things moving quickly. He was already aware of the situation, but felt that Steven had to remain in hospital at all costs, yet agreed that the Urgences environment was totally unsuitable, with Steven’s very low immunity. He promised to go to Urgences himself and try to see what could be done.
In the meantime, many doctors had come and gone to visit Steven in Urgences and perform various examinations. White count had dropped to 1,000. The doctors from Trèfle and from pneumology suspected that there is a lung infection but this would need further investigation.
By 5:30pm, Steven was provided with a room in Cocquelicot (poppy) 5 which is the section for pneumology and thoracic oncology. As it turns out, this unit has been newly renovated and is like 5 star accommodation in comparison to the rest of the hospital, so no worries regarding a bacteria laden setting; everything is pristine and spotless.
In the middle of all this, Steven is more than upset and downhearted to be back in hospital, especially as Ellen arrives from Brussels today and this will be her last visit before she returns to university in Liverpool. It is just so disappointing to see those hard fought for, so precious, white cells being wiped out so easily.
As we left Steven last night, he was just beginning to find some level of acceptance of the situation. He had a scan after we left, at around tennish. He was informed that another bronchoscopy will be performed today to scope his lung and see what’s happening – as if he didn’t feel miserable enough!
Anyway, that’s the story so far. Steven now needs all the prayers, good will, positive thoughts everyone can muster to be sent in his direction, and fast. We always knew that post transplant, things can change for the worse in a heartbeat but this doesn’t make it any easier to accept or deal with.
Rest assured that I will now post everyday, to keep everyone updated of all new developments.
Love to all,
Evelyn and Matthew
Thursday, 6 September 2007
DAY 71
Dear everyone,
Sorry for the delay in getting back to the old blog, but there has been nothing major to really report over the past week. In this case, no news has been good news, really.
Feargal spent most of this week with us, returning to Brussels this evening. Despite spending a summer as the singular caretaker of our swimming pool, his labour has not really been duly rewarded as this has been possibly the worst summer ever for getting quality swim time due to the poor weather. Not much luck for Feargal and his buddies this year, in that respect! When home, he will cover it up until next year – a definite signal that the summer season has ended. Here in Paris, the leaves are already falling off the trees. I can't honestly say that the somewhat dreary weather of this seemingly very short summer has made much of a difference to us. So much time has been spent in the hospital and, since Steven has been home, he finds it uncomfortable to be in strong sunlight; in fact, he has been advised to shun it as skin is extra senstitive and super vulnerable to the sun's rays, post transplant.
Wednesday's hôpital du jour was pretty much as usual. Everything appeared to be in good order with Steven. They have discovered that the infection in his central line is localised as opposed to systemic; so it has neither spread from nor throughout the rest of his body. This infection is different to the one he had previously and has been identified as enterococcus faecalis, which is a common infection for wounds. We now have a nurse attending Steven everyday at home to clean and change the dressing and inject vancomycin (antibiotic) into his line. She arrives every evening wearing a crash helmet, as the motor bike is her preferred means of transport (very practical in Parisian traffic), and is quite a character.
We also have two physiotherapists who arrive twice weekly to deliver a physical exercise regime. At this point, Steven suffers from chronic back ache (from the steroids and resulting Cushing syndrome) and still gets very tired, very easily. Although this is 'par for the course', we all felt it important that someone knowledgeable should oversee his fitness plan. He has overdone it a couple of times and has been quite sore and exhausted as a result.
Steven has another appointment in the hospital tomorrow (Friday) for a further blood draw. It is expected that he will need platelets, although he did already have a transfusion during Wednesday's visit.
Outside of all the medical tribulations, Steven remains in good form. He eats enough to fuel a small family, and is now gaining a little weight. He looks quite plump and rounded (very uncharacteristic for him), but this is largely a result of steroid swelling and not true weight.
Well, Paris is full of news of the world cup in rugby to be held on French turf. It really is a popular sport here and they take it very seriously. We must have seen that punch to Brian O'Driscoll's nose about a thousand times now, in slow motion, and from every angle. The Irish team seem to have arrived today with O'Driscoll sporting a red beret – I guess in honour of the host nation. It should all make for some good spectating.
My niece Aideen, arrives Saturday morning for another visit. Instant entertainment is at hand!
With love from all of us to all of you,
Evelyn, Matthew and Steven
Sorry for the delay in getting back to the old blog, but there has been nothing major to really report over the past week. In this case, no news has been good news, really.
Feargal spent most of this week with us, returning to Brussels this evening. Despite spending a summer as the singular caretaker of our swimming pool, his labour has not really been duly rewarded as this has been possibly the worst summer ever for getting quality swim time due to the poor weather. Not much luck for Feargal and his buddies this year, in that respect! When home, he will cover it up until next year – a definite signal that the summer season has ended. Here in Paris, the leaves are already falling off the trees. I can't honestly say that the somewhat dreary weather of this seemingly very short summer has made much of a difference to us. So much time has been spent in the hospital and, since Steven has been home, he finds it uncomfortable to be in strong sunlight; in fact, he has been advised to shun it as skin is extra senstitive and super vulnerable to the sun's rays, post transplant.
Wednesday's hôpital du jour was pretty much as usual. Everything appeared to be in good order with Steven. They have discovered that the infection in his central line is localised as opposed to systemic; so it has neither spread from nor throughout the rest of his body. This infection is different to the one he had previously and has been identified as enterococcus faecalis, which is a common infection for wounds. We now have a nurse attending Steven everyday at home to clean and change the dressing and inject vancomycin (antibiotic) into his line. She arrives every evening wearing a crash helmet, as the motor bike is her preferred means of transport (very practical in Parisian traffic), and is quite a character.
We also have two physiotherapists who arrive twice weekly to deliver a physical exercise regime. At this point, Steven suffers from chronic back ache (from the steroids and resulting Cushing syndrome) and still gets very tired, very easily. Although this is 'par for the course', we all felt it important that someone knowledgeable should oversee his fitness plan. He has overdone it a couple of times and has been quite sore and exhausted as a result.
Steven has another appointment in the hospital tomorrow (Friday) for a further blood draw. It is expected that he will need platelets, although he did already have a transfusion during Wednesday's visit.
Outside of all the medical tribulations, Steven remains in good form. He eats enough to fuel a small family, and is now gaining a little weight. He looks quite plump and rounded (very uncharacteristic for him), but this is largely a result of steroid swelling and not true weight.
Well, Paris is full of news of the world cup in rugby to be held on French turf. It really is a popular sport here and they take it very seriously. We must have seen that punch to Brian O'Driscoll's nose about a thousand times now, in slow motion, and from every angle. The Irish team seem to have arrived today with O'Driscoll sporting a red beret – I guess in honour of the host nation. It should all make for some good spectating.
My niece Aideen, arrives Saturday morning for another visit. Instant entertainment is at hand!
With love from all of us to all of you,
Evelyn, Matthew and Steven
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