Well the good news is we are back at Queen Mary's! Daisy had a new Hickman line placed and her picc line removed last Tuesday and was transferred back from GOS last Wednesday. It was wonderful to arrive back, everyone was so excited to see her and the staff had arranged all her toys and written "welcome back Daisy" on her white board. I could sense Daisy visibly relaxing, it's not quite home but at least it's closer to home and at Queen Mary's everyone knows her so well, she was innundated with visitors from the ward for the rest of the day.
The next day she was very subdued and I had a sneaky suspicion something was not quite right, this was confirmed later that afternoon when she fell asleep, something she only does during the day if she is ill, and woke up with a 40.2 temperature. It was actually one of the few times I just felt like bursting into tears then and there - not another line infection, and only 36 hours since the new one had been placed. She also developed copious runny nappies so I was also panicking about Cdiff, which (of course) Daisy has already had! Well thankfully she does not have Cdiff although the runny nappies are still continuing and look more like her gut deciding it's not going to work (not that it actually works anyway) but she does have a line infection and her gastrostomy site is colonised with staff aureus. Now having managed against all the odds to clear her of MRSA (methycillin resistant staff aureus) I don't want these little bugs to go and mutate into it so we are trying to be really rigorous with infection control procedures - not that we weren't anyway, it's just we all know what Daisy can do. So to cut a long story short she is back on IV antibiotics . This is such a familiar patter, she had only been off antibiotics for 8 days before the new infection, we have not managed a fortnight off antibiotics since the summer, that would be a real milestone!
We are, in Daisy fashion, making progress - ie; two steps forward and one step back but at least making some progress. The exciting news is that we are now on the radar of the Nutrition Nurse Specialists at GOS. To be able to go home we have to be on their radar as they organise the home TPN package, they also insist on children being a minimum of 10 hours off TPN a day(they have moved the goalposts, I had heard it was 8 hours!). The best thing is they agreed with our need to get Daisy out of the hospital and getting some sort of life outside of her isolation room as 7 months in isolation is not conducive to neurodevelopment and probably some sort of crime against her basic human rights! So we have actually left GOS this time with a plan - both to start giving Daisy breaks from TPN so that she can get outside and to try and get a mobile pump for times when she is on TPN.
The former is probably easier to achieve than the latter. This week, we implemented the TPN weaning plan with the aim being to get her to tolerating 6 hour breaks off the TPN. She still will be permanently attached to her other pump which drips milk into her jejunostomy, but that has been a permanent fixture 24/7 since she was just a few months old (and I promise never to complain about being tied to a pump again knowing now what the alternative is!). As of today she is tolerating four hours off her TPN and her blood sugars, though on the low side are reasonably stable, I am just hoping that we can achieve 6 hours by next week as I would love to be able to take her back to school for a couple of hours each day. I am also tentatively hoping we can bring Daisy home for a few hours this weekend - I just hope nothing scuppers this plan as I mentioned the possibility to the children and they are so excited at the thought.
Getting a mobile TPN pump is, as always, a lot more complicated than it should be. The plan is to start Daisy on the home delivery service while still in hospital - this means that her TPN would be made up by a pharmacy and 2 weeks supply delivered to her at a time to be used in conjunction with a mobile pump. This will work fine when we are at home but having a child still in hospital accessing a home delivery service is proving a bit difficult for the good old NHS to get it's head around. The issue as always is who pays for it. It Daisy was at home it would be the Primary Care Trust (PCT) but she is in hospital and so they insist that the Hospital Trust should pay, as the delivery is to a hospital and not home the delivery company say that VAT is applicable on the TPN and anyway the hospital trust are saying they have their own TPN pharmacy and so will not pay for something they can provide (albeit without a mobile pump), as Daisy is not currently an inpatient at Great Ormond Street they are not going to pay so we have reached a stalemate until someone out of the three trusts sees sense. I'm just focussing on getting enough time off TPN for Daisy to have some time out, if these silly conversations are still happening by this time next month I may consider a major toys out of pram episode but you never know, maybe it will be all sorted!
The other useful tip we got from the nutrition nurse was the use of line locks to help stop infection. Basically when Daisy's hickman line is not being used we can put a drug called Taurolock into the line to kill any bugs which may be pushed into her blood stream when the line is used again. Apparantly since using this drug they have seen a massive drop in line infections. The pharmacists are on the case and I hope we can start using it soon as we cannot risk any more line infections or losing any more lines.
Anyway, inspite of all the continuing issues, it's fantastic to be home, sleeping in my own bed and spending quality time as a family. The children have been so pleased that Daisy is back close to home - both Jules and Xanthe wrote about it in their school diaries. They are definitely more relaxed now we are out of GOS as they know that the only reason we are ever in that hospital is when things are not so good. I'm just really hoping we get to bring Daisy home for a few hours this weekend and do normal things like sit on the sofa and watch TV, these are things that we all take for granted but when your family is torn apart for so long like ours it's the little things that are so important.
29 April 2009
16 April 2009
So, you know what it's like, you transfer to Great Ormond Street for a couple of days for a quick upper and lower endoscopy and end up staying a month....in fact it is now seven months (give or take a few days) since Daisy has been home and coming up to a month since we came to Rainforest Ward.
The good news is that she is so much better than a week ago, her additional potassium is being weaned down and she is off all antibiotics and anti-fungals - this makes me twitchy, she does not last long without needing some sort of weapon of mass destruction coursing through her veins - I will remain positive however, maybe this time the line will last....
The plan now is to take out her picc line and put in a new Hickman line early next week, theoretically then we should be good to go although we will let Miss Daisy decide on that. It has been nice to have Daisy reasonably well over the past few days as we have been able to use the fantastic play facilities at Great Ormond Street. The best thing is the other children have also been able to use the play centre too which has taken some of the pressure off entertaining them. Today Daisy decorated fairy cakes with a group of other children including a young boy on a "Berlin Heart" machine, which is an artificial heart. Great Ormond Street is probably one of the few places in the UK where a little girl being kept alive by a complex mix of chemicals dripped into a central line into her blood stream can play with a boy being kept alive with an artificial heart and no-one bats an eyelid!
I had a good chat with the gastro dietitian today. Understandibly they are very twitchy about pushing Daisy too quickly particularly given her recent experiences. For Daisy to be able to have night time only on TPN she would need to tolerate 34mls an hour of feed a day, with possibly more fluid during hot weather because of her heart and kidney problems. This currently seems a long way off so we are aiming for 2/3 time on TPN which would make us eligible to come home as the minimum that is allowed is 8 hours off TPN. At the moment she is managing 14mls/hour of feed into her tummy over 24 hours but it is difficult to push this any more at the moment as she will need to be starved again for another general anaesthetic next week when her new Hickman line is put in, and we will be back at square one as Daisy cannot go straight back onto full feeds after being starved and will need to build up ml by ml. As always, two steps forward and one step back, however I am optimistic that with the new feeding tube directly into her intestines we can try and aim for our 8 hours off TPN and get home (at some point this year!)
I have now given up on the bed in Daisy's room - basically she is going to wake up and cry whether I am there or not and I need a decent night's sleep to keep functioning, whereas the night staff can go home at the end of their shift, I cannot. For the past few nights I have left the hospital at 8.30pm and slept at home leaving for the hospital at 7.30am the next day. I am looking forward to being back at our local hospital, hopefully next week, it is only 12 minutes drive away and suddenly that life seems so much less complicated than a Northern Line commute to Great Ormond Street. It's over to you now Daisy, show us that you can turn the corner and get some time off that TPN. I'll do all the training I need and put in as many hours as required in the hospital just to get her home.
The good news is that she is so much better than a week ago, her additional potassium is being weaned down and she is off all antibiotics and anti-fungals - this makes me twitchy, she does not last long without needing some sort of weapon of mass destruction coursing through her veins - I will remain positive however, maybe this time the line will last....
The plan now is to take out her picc line and put in a new Hickman line early next week, theoretically then we should be good to go although we will let Miss Daisy decide on that. It has been nice to have Daisy reasonably well over the past few days as we have been able to use the fantastic play facilities at Great Ormond Street. The best thing is the other children have also been able to use the play centre too which has taken some of the pressure off entertaining them. Today Daisy decorated fairy cakes with a group of other children including a young boy on a "Berlin Heart" machine, which is an artificial heart. Great Ormond Street is probably one of the few places in the UK where a little girl being kept alive by a complex mix of chemicals dripped into a central line into her blood stream can play with a boy being kept alive with an artificial heart and no-one bats an eyelid!
I had a good chat with the gastro dietitian today. Understandibly they are very twitchy about pushing Daisy too quickly particularly given her recent experiences. For Daisy to be able to have night time only on TPN she would need to tolerate 34mls an hour of feed a day, with possibly more fluid during hot weather because of her heart and kidney problems. This currently seems a long way off so we are aiming for 2/3 time on TPN which would make us eligible to come home as the minimum that is allowed is 8 hours off TPN. At the moment she is managing 14mls/hour of feed into her tummy over 24 hours but it is difficult to push this any more at the moment as she will need to be starved again for another general anaesthetic next week when her new Hickman line is put in, and we will be back at square one as Daisy cannot go straight back onto full feeds after being starved and will need to build up ml by ml. As always, two steps forward and one step back, however I am optimistic that with the new feeding tube directly into her intestines we can try and aim for our 8 hours off TPN and get home (at some point this year!)
I have now given up on the bed in Daisy's room - basically she is going to wake up and cry whether I am there or not and I need a decent night's sleep to keep functioning, whereas the night staff can go home at the end of their shift, I cannot. For the past few nights I have left the hospital at 8.30pm and slept at home leaving for the hospital at 7.30am the next day. I am looking forward to being back at our local hospital, hopefully next week, it is only 12 minutes drive away and suddenly that life seems so much less complicated than a Northern Line commute to Great Ormond Street. It's over to you now Daisy, show us that you can turn the corner and get some time off that TPN. I'll do all the training I need and put in as many hours as required in the hospital just to get her home.
6 April 2009
People keep asking me how come I am so chilled about things, I guess over four years of this bumpy ride with Daisy has taught me to try and go with the flow and get through it in one piece for both our sakes, I have to take each day and trust that Daisy will continue to defy the odds. I was told by one of our geneticists who knows Daisy well to forget about what the books say and look at Daisy for my strength, this morning she was sat on my lap smiling and waving at her consultant and to look at her you would not believe what she has been through over the past few days (unless of course you looked at her blood results, which tell a very different story).
So last Monday she was scheduled to have her infected Hickman line taken out following a weekend of high temps and lethargy. Unfortunately and in a bizarre way our old nemesis of MRSA came back to haunt us. Daisy is still categorised as MRSA+ in this hospital inspite of all the clear swabs and cultures, the infection control rules here state that the child must be out of hospital for 6 months for this category to be lifted. No-one believes for one minute that Daisy is still colonised with MRSA but unfortunately while she has this against her name she has to be isolated and when it comes to surgery she has to have the last theatre slot so that the theatre can have a "level 2 clean". This situation was becoming farcical, as Daisy was last on the list , the interventional radiologists did not have time to take her line out and her condition was rapidly worsening, her peripherals were shutting down and she needed fluid rescuscitation....cue another trip to the Patient Advice and Liaison Team (Pals) for me and strongly worded emails to infection control from Daisy's medical team. Thank goodness everyone saw sense and her MRSA+ status was lifted and she was scheduled for the next day, second on the list. Not a moment too soon as she was really becoming poorly and also needed a blood transfusion as her haemoglobin had dropped. So that all happened on Tuesday - infected Hickman line whipped out, temporary picc line placed and a blood transfusion given
That should really have been the end of it, and in some ways it was, her temperature came down, but normally a blood transfusion would give Daisy more energy and colour and in this case it didn't. She looked grey and lethargic the next day and her blood gas results showed that her her potassium was dangerously low and her sodium was very high. She was started on extra fluids but we have not been able to bring her potassium levels up. Some of the meds she is on lower potassium and some of them are damaging to the kidneys which play a role in how potassium is used in the body. The past week has been a cycle of taking bloods, running a blood gas, finding her potassium is too low, putting up massive potassium infusions, checking her bloods again....... This is risky, too little potassium can cause the heart to stop, Daisy has cardiomyopathy anyway so this is extra worrying, too much potassium can kill you and we have been pumping maximum doses into her. She has been permanently wired up to an ecg monitor and the doctors have been walking around with worried looks on their faces. One of the meds which suppresses the potassium has been stopped and her immunosuppressant iv infusions have been stopped as they can interfere with the kidneys. This has given us another conundrum - stopping these meds will hopefully help Daisy rebuild her supply of potassium and hold onto it, but not having the immunosuppressants may cause the inflammation to flare up taking us right back to square one and undoing all the progress of the last few months.....
This plate spinning is too much for me, I'm leaving it to her big cheese consultant to work out. He is the expert and Andy and I have confidence that he will do the best thing for Daisy, always aware that our number one priority is to get her home at some point. At his point however we begin our third week at Great Ormond Street, today we had the first potassium level which was in normal limits, in my new found understated manner I did not jump for joy as I need to see a few of these results before being convinced that she is holding onto her potassium and turning the corner. The levels that are required for her immunosuppressants to work are now too low and so a decision needs to be made very soon about what to do next before her gut flares up. Feeds through her jejunostomy seem a long way off at this point but this is the only solution and at some point very soon we need to try again as this is the only way to reduce the reliance on TPN and the vicious cycle of infection and damage it brings...
I'm waiting for someone in the street to say to me "cheer up love, might never happen" then I can floor them with our story and add the additional icing on the cake that Andy was told on Friday that his role is redundant and he will have to apply of another role within the company or accept redundancy, still, it could be worse I suppose, we have just got through another week where Daisy put the frighteners on us and we have lived to tell the tell.
I always give up alcohol and chocolate for Lent, I am particularly proud that I have managed to see it through this year because quite frankly, come the end of lent I am going to enjoy the biggest chocolate and red wine hangover known to mankind!
So last Monday she was scheduled to have her infected Hickman line taken out following a weekend of high temps and lethargy. Unfortunately and in a bizarre way our old nemesis of MRSA came back to haunt us. Daisy is still categorised as MRSA+ in this hospital inspite of all the clear swabs and cultures, the infection control rules here state that the child must be out of hospital for 6 months for this category to be lifted. No-one believes for one minute that Daisy is still colonised with MRSA but unfortunately while she has this against her name she has to be isolated and when it comes to surgery she has to have the last theatre slot so that the theatre can have a "level 2 clean". This situation was becoming farcical, as Daisy was last on the list , the interventional radiologists did not have time to take her line out and her condition was rapidly worsening, her peripherals were shutting down and she needed fluid rescuscitation....cue another trip to the Patient Advice and Liaison Team (Pals) for me and strongly worded emails to infection control from Daisy's medical team. Thank goodness everyone saw sense and her MRSA+ status was lifted and she was scheduled for the next day, second on the list. Not a moment too soon as she was really becoming poorly and also needed a blood transfusion as her haemoglobin had dropped. So that all happened on Tuesday - infected Hickman line whipped out, temporary picc line placed and a blood transfusion given
That should really have been the end of it, and in some ways it was, her temperature came down, but normally a blood transfusion would give Daisy more energy and colour and in this case it didn't. She looked grey and lethargic the next day and her blood gas results showed that her her potassium was dangerously low and her sodium was very high. She was started on extra fluids but we have not been able to bring her potassium levels up. Some of the meds she is on lower potassium and some of them are damaging to the kidneys which play a role in how potassium is used in the body. The past week has been a cycle of taking bloods, running a blood gas, finding her potassium is too low, putting up massive potassium infusions, checking her bloods again....... This is risky, too little potassium can cause the heart to stop, Daisy has cardiomyopathy anyway so this is extra worrying, too much potassium can kill you and we have been pumping maximum doses into her. She has been permanently wired up to an ecg monitor and the doctors have been walking around with worried looks on their faces. One of the meds which suppresses the potassium has been stopped and her immunosuppressant iv infusions have been stopped as they can interfere with the kidneys. This has given us another conundrum - stopping these meds will hopefully help Daisy rebuild her supply of potassium and hold onto it, but not having the immunosuppressants may cause the inflammation to flare up taking us right back to square one and undoing all the progress of the last few months.....
This plate spinning is too much for me, I'm leaving it to her big cheese consultant to work out. He is the expert and Andy and I have confidence that he will do the best thing for Daisy, always aware that our number one priority is to get her home at some point. At his point however we begin our third week at Great Ormond Street, today we had the first potassium level which was in normal limits, in my new found understated manner I did not jump for joy as I need to see a few of these results before being convinced that she is holding onto her potassium and turning the corner. The levels that are required for her immunosuppressants to work are now too low and so a decision needs to be made very soon about what to do next before her gut flares up. Feeds through her jejunostomy seem a long way off at this point but this is the only solution and at some point very soon we need to try again as this is the only way to reduce the reliance on TPN and the vicious cycle of infection and damage it brings...
I'm waiting for someone in the street to say to me "cheer up love, might never happen" then I can floor them with our story and add the additional icing on the cake that Andy was told on Friday that his role is redundant and he will have to apply of another role within the company or accept redundancy, still, it could be worse I suppose, we have just got through another week where Daisy put the frighteners on us and we have lived to tell the tell.
I always give up alcohol and chocolate for Lent, I am particularly proud that I have managed to see it through this year because quite frankly, come the end of lent I am going to enjoy the biggest chocolate and red wine hangover known to mankind!
28 March 2009
I suppose you could say that we are having a typical Daisy stay at Great Ormond Street in that nothing is going to plan...The good news is that there has been a major reorganisation on Rainforest and the ward is like a different place, everyone is friendly, caring and proactive and really representing the best of one of the leading children's hospitals in the world. This has been such a relief, particularly as you have probably guessed we have overstayed our allocated time on the ward...
Daisy has developed another bacteria infection of the blood ontop of the candida in her bloodstream and urine infection. She is now on antibiotics I have never heard of and apparantly starting to move into last resort categories as the bug she has developed here is one she has had before and seems to be resistant to some of the usual antibiotics she is on. Her hickman line clearly has to come out and this is now scheduled for Monday with insertion of a temporary picc line to give her chance to clear her infection. Regular readers will know we have not had good success with previous picc lines, they should last a few months (they are like semi- permanent lines) but Daisy's only lasted a week resulting in another blue light dash to GOS for a new line. I am wondering if they will keep her here now until the infection clears and they can put a new Hickman line in . This will really test the new Rainforest happy attitude - previously I would have heard mutterings about needing the bed space but instead the staff have been fantastic and really concerned just for Daisy's well being and the fact that things have not gone according to plan for us.
Logistically things will get difficult if we stay any later than the middle of next week. Mum goes back to Wales tomorrow and Andy and I will juggle staying at the hospital and managing the school run - probably Andy will stay here for nights and I will commute back and forth during the days with the children at after school club and at friends houses...
There has been good news though. Daisy had her upper and lower endoscopy on Thursday and the inflammation has decreased which means that the immunosuppressants and steroids are working - yippeee!! Her doctor wants to keep her on this therapy for the forseeable future so her risk of infection will still be as high. He also placed a jejenal tube for feeding Daisy at the top of her intestine, bypassing her stomach altogether. We are hoping that we can increase some of her feeds using this method and get more calories into her rather than just via her TPN. The endocrine doctors also feel that Daisy should be able maintain her blood sugars for small breaks from the TPN with just milk feeds. The plan, once Daisy is over this infection, is to try and achieve longer and longer breaks from the TPN with the aim of 8 hours a day off. She will still be attached to a continuous feed pump for milk feed but this was Daisy's life before TPN and I promise I will never complain about carrying a pump around again having seen the alternative!!!
The home word still has not been mentioned - we need to achieve these breaks from the TPN before this can happen so the reality still is June/July. Being superwoman I am already contingency planning for Daisy being in hospital during the long school holidays although it would be nice for her to have long enough breaks from TPN to be able to come home for the best part of the day and go back to the hospital at night.
Andy stayed at the hospital last night and I was able to get home overnight, fitting in a quick meal out with some friends and a chance to catch up on some gossip - these moments keep me sane and de-institutionalise me for a few hours! It was great to wash my hair, the shower on Rainforest still runs on lukewarm and you have to brace yourself to get into it so hairwashing is out of the question. The best bit was sleeping in my own bed - luxury! Did a quick Primark shop with Xanthe in the morning to pick up dungarees for Daisy as they are great at holding Hickman lines and enteral tubes in place, then we all drove up to GOS. Fortunately siblings can go to the Activity Centre here on the weekend so while mum sat with Daisy Andy and I were able to have a quick bite to eat and a coffee together, a rare treat these days. The combination of a sick child, 3 hyperactive siblings plus tired parents/grandma is not a great one so Andy has now driven everyone home and I am back to my hospital bed and prison regime!
Xanthe is singing at the Albert Hall on Monday evening and we have been promised that Daisy is first on the afternoon theatre list so if our plan works out of Daisy's respite nurse sitting with her for the evening and various children being delivered to the Albert Hall we may just get to all be able to go. As we know, the best laid plans........
I am relieved that Daisy is at GOS at the moment, if we need it paediatric intensive care is just down the corridor, hopefully she won't need it, but as always her happy smiles really don't show how ill she is. But inspite of it all we are making progress, and slowly, very slowly, we are inching towards the day when we can come home.
Daisy has developed another bacteria infection of the blood ontop of the candida in her bloodstream and urine infection. She is now on antibiotics I have never heard of and apparantly starting to move into last resort categories as the bug she has developed here is one she has had before and seems to be resistant to some of the usual antibiotics she is on. Her hickman line clearly has to come out and this is now scheduled for Monday with insertion of a temporary picc line to give her chance to clear her infection. Regular readers will know we have not had good success with previous picc lines, they should last a few months (they are like semi- permanent lines) but Daisy's only lasted a week resulting in another blue light dash to GOS for a new line. I am wondering if they will keep her here now until the infection clears and they can put a new Hickman line in . This will really test the new Rainforest happy attitude - previously I would have heard mutterings about needing the bed space but instead the staff have been fantastic and really concerned just for Daisy's well being and the fact that things have not gone according to plan for us.
Logistically things will get difficult if we stay any later than the middle of next week. Mum goes back to Wales tomorrow and Andy and I will juggle staying at the hospital and managing the school run - probably Andy will stay here for nights and I will commute back and forth during the days with the children at after school club and at friends houses...
There has been good news though. Daisy had her upper and lower endoscopy on Thursday and the inflammation has decreased which means that the immunosuppressants and steroids are working - yippeee!! Her doctor wants to keep her on this therapy for the forseeable future so her risk of infection will still be as high. He also placed a jejenal tube for feeding Daisy at the top of her intestine, bypassing her stomach altogether. We are hoping that we can increase some of her feeds using this method and get more calories into her rather than just via her TPN. The endocrine doctors also feel that Daisy should be able maintain her blood sugars for small breaks from the TPN with just milk feeds. The plan, once Daisy is over this infection, is to try and achieve longer and longer breaks from the TPN with the aim of 8 hours a day off. She will still be attached to a continuous feed pump for milk feed but this was Daisy's life before TPN and I promise I will never complain about carrying a pump around again having seen the alternative!!!
The home word still has not been mentioned - we need to achieve these breaks from the TPN before this can happen so the reality still is June/July. Being superwoman I am already contingency planning for Daisy being in hospital during the long school holidays although it would be nice for her to have long enough breaks from TPN to be able to come home for the best part of the day and go back to the hospital at night.
Andy stayed at the hospital last night and I was able to get home overnight, fitting in a quick meal out with some friends and a chance to catch up on some gossip - these moments keep me sane and de-institutionalise me for a few hours! It was great to wash my hair, the shower on Rainforest still runs on lukewarm and you have to brace yourself to get into it so hairwashing is out of the question. The best bit was sleeping in my own bed - luxury! Did a quick Primark shop with Xanthe in the morning to pick up dungarees for Daisy as they are great at holding Hickman lines and enteral tubes in place, then we all drove up to GOS. Fortunately siblings can go to the Activity Centre here on the weekend so while mum sat with Daisy Andy and I were able to have a quick bite to eat and a coffee together, a rare treat these days. The combination of a sick child, 3 hyperactive siblings plus tired parents/grandma is not a great one so Andy has now driven everyone home and I am back to my hospital bed and prison regime!
Xanthe is singing at the Albert Hall on Monday evening and we have been promised that Daisy is first on the afternoon theatre list so if our plan works out of Daisy's respite nurse sitting with her for the evening and various children being delivered to the Albert Hall we may just get to all be able to go. As we know, the best laid plans........
I am relieved that Daisy is at GOS at the moment, if we need it paediatric intensive care is just down the corridor, hopefully she won't need it, but as always her happy smiles really don't show how ill she is. But inspite of it all we are making progress, and slowly, very slowly, we are inching towards the day when we can come home.
22 March 2009
So, one minute I am blogging about taking each day and enjoying the moment , and the next minute I walk into the ward one morning to be told by the nurse looking after Daisy that she had spiked a 40.4 degree temperature and was unwell.........great, another white knuckle ride again.
Of course everyone who knows Daisy well knows this pattern, we plan something, in this case, Andy going for a weekend to France with one of the children or we have another inpatient stay at Great Ormond Street booked and you can guarantee that Daisy will throw a spanner in the works. Of course this week it was a double whammy, weekend plans and inpatient stay so Daisy threw a double infection - candida in her bloodstream (you will remember from previous posts this is bad, bad, bad!) and a really bad urine infection , and for good measure streptococcus was isolated in her gastrostomy site. The bottom line is the Hickman Line (no pun intended) will have to be removed, candida sticks and you do not want to risk it creating fungal balls which settle in the brain, heart, lungs, kidneys - as I said, this one is bad.
Of course everyone who knows Daisy well knows this pattern, we plan something, in this case, Andy going for a weekend to France with one of the children or we have another inpatient stay at Great Ormond Street booked and you can guarantee that Daisy will throw a spanner in the works. Of course this week it was a double whammy, weekend plans and inpatient stay so Daisy threw a double infection - candida in her bloodstream (you will remember from previous posts this is bad, bad, bad!) and a really bad urine infection , and for good measure streptococcus was isolated in her gastrostomy site. The bottom line is the Hickman Line (no pun intended) will have to be removed, candida sticks and you do not want to risk it creating fungal balls which settle in the brain, heart, lungs, kidneys - as I said, this one is bad.
She is smiling and gorgeous as ever which really belies her state - the infection is systemic, ie everywhere and requiring big doses of anti-fungal infusions which have really nasty side effects. On top of that she is back on antibiotics for the urine infection. These drugs together with the steroids and immunosuppressants do not make for a good combinations so her kidneys and liver are being monitored constantly. The only good thing is that we are going into GOS tomorrow so hopefully they can fit in a line change then, if the ward doctors can get their act together, I'm just keeping everything crossed that the endoscopy and jejunostomy can still go ahead as without these two procedures we will not know if we can stop the immunosuppressants and try and increase her feeds to get her time off the TPN. And time off the TPN means we can become eligible for the HPN programme - Home TPN and maybe a plan and a timeframe for coming home....
So many things keep moving and changing, many not under our control, the stress is starting to get to us all. Thank goodness Andy had a chance to get away and recharge his batteries, I do not want to be away from Daisy so knowing that at least one of us is getting a break is a comfort. I am getting fed up of lots of things about our institutionalised life however and have started to compile a list, many of which will be familiar with friends who read this blog:-
In no particular order...
- having to ask permission to do things, eg like getting Daisy's growth hormone out of the fridge
-not being able to take my cup of tea into her room
-dragging a huge IV pole with me and holding 3 lines to make sure they do not go on the floor everywhere we go
-trying to keep 3 other children entertained while spending time with Daisy after school
-not being able to spend any time with Andy, particularly on the weekends when one or other of us is at the hospital and the other is at home with the 3 children
-having to leave Daisy at night
-not being able to have her home and to be together as a family
-living our lives in a goldfish bowl with no chance of any privacy
Anyway, whinge over. I am hoping that this week we may leave GOS with a bit of a plan and way forward. The longer Daisy is in hospital the more susceptible she is going to be to infections, but she cannot come out until she is stable. We have to go at her pace but at the same time I want the doctors to remember that she is a 4 year old girl with a life to live and she cannot continue to live it confined to a cubicle in hospital. If her life is going to be short then I want it to be full of memories of fun with her family at home....
16 March 2009
Fingers crossed Daisy is continuing to do well, not of course without her little ups and downs, which once upon a time seemed such a major thing and are now just another thing...... Her recent cardiology appointment showed that her heart is enlarged and the mild cardiomyopathy she has always had has become a bit worse, probably as a result of the infections and medications. We are now looking at starting heart meds, this was inevitable at some point in Daisy's life so it will be just another thing to add to the melting pot. Before starting these however she will see a renal specialist to discuss her high blood pressure. Yes - you read it correctly, when you are a child and your bp is high you are referred to a kidney specialist....it's because of the kidney's role in managing some of the chemicals which play a part in how the heart functions - especially things like sodium and potassium levels in the blood stream.
We hope to fit this in during next week's Great Ormond Street stay. We are now officially in countdown for this stay, which regular readers of this blog will know that I am not looking forward too. While it will be great to get some more biopsies taken and also see whether the drug regime has helped with the massive gut inflammation and scarring, I just hate being on Rainforest Ward with Daisy. Our previous stays have been so depressing, not just because they have always involved bad news and emergencies, but also the staff seem to be so demotivated and the ward morale is just awful. I did phone Great Ormond Street today to check that they now had 3 clear MRSA swabs from Daisy's gastrostomy site - 3 clear swabs means she can leave her cubicle and take advantage of the play facilities available at GOS, and as we all know, 3 clear swabs from another hospital do not count. The good news is that all 3 of her last GOS swabs are now clear!!!! The bad news is that the last swab grew pseudomonas - another hard to eradicate bug. Isn't it great how they made sure Daisy's local hospital were informed of this (not!). She will be reswabbed at the local hospital tomorrow to see if she is still colonised with this bug. Being colonised is fine, in a person with a normal immune response, but in Daisy's case, as with the MRSA, if these bugs get into her blood stream it could be fatal. Life once again is like a game of Russian Roulette.....
I am still pushing to get sign off to be able to reset and manage Daisy's hospital TPN pump - this would mean that we could leave the hospital for a couple of hours without a nurse. I could take her to school for a few hours, or down to our hospice or even home.....The problem is this has never been done before so all sorts of risk assessments and disclaimers have to be worked out, I'm going to keep pushing for this as Daisy needs to be in school occasionally, she needs the social interaction and she especially needs the access to the specialist facilities her school offers (it is a specialist school for children with vision impairments).
Last Friday the ward did a fundraiser for Comic Relief Red Nose Day, Daisy and I had the best day. The nurses made her a cute T shirt and she dressed up in Mini Mouse ears, a ballet tutu and wings. We love watching the Comic Relief on TV and again I was struck by how fortunate Daisy is in the lottery of life. Had she been born in the third world there is no way she would be alive today, I know I knock the NHS sometimes but I am so grateful for the fantastic free treatment we get. Our hospital is only 12 minutes drive away and then we have access to many world class facilities in specialist hospitals in London..... anyway, watching Comic Relief made me realise, sometimes I get down about things but the bigger picture is that Daisy has truly enriched our lives, and changed them. I found this quote the other day that sums up how Daisy has taught us to cherish the little things and live for the moment;
One day at a time- this is enough. Do not look back and grieve over the past, for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful that it will be worth remembering
(Ida Scott Taylor)
Yesterday we had a beautiful thirty minutes when Daisy was allowed off her TPN and was just attached to her enteral pump - we walked a circuit around the hospital as a family. This was the best thing ever, enjoying an early spring evening with my husband and all four children - a beautiful moment to keep us going through the tough times.
We hope to fit this in during next week's Great Ormond Street stay. We are now officially in countdown for this stay, which regular readers of this blog will know that I am not looking forward too. While it will be great to get some more biopsies taken and also see whether the drug regime has helped with the massive gut inflammation and scarring, I just hate being on Rainforest Ward with Daisy. Our previous stays have been so depressing, not just because they have always involved bad news and emergencies, but also the staff seem to be so demotivated and the ward morale is just awful. I did phone Great Ormond Street today to check that they now had 3 clear MRSA swabs from Daisy's gastrostomy site - 3 clear swabs means she can leave her cubicle and take advantage of the play facilities available at GOS, and as we all know, 3 clear swabs from another hospital do not count. The good news is that all 3 of her last GOS swabs are now clear!!!! The bad news is that the last swab grew pseudomonas - another hard to eradicate bug. Isn't it great how they made sure Daisy's local hospital were informed of this (not!). She will be reswabbed at the local hospital tomorrow to see if she is still colonised with this bug. Being colonised is fine, in a person with a normal immune response, but in Daisy's case, as with the MRSA, if these bugs get into her blood stream it could be fatal. Life once again is like a game of Russian Roulette.....
I am still pushing to get sign off to be able to reset and manage Daisy's hospital TPN pump - this would mean that we could leave the hospital for a couple of hours without a nurse. I could take her to school for a few hours, or down to our hospice or even home.....The problem is this has never been done before so all sorts of risk assessments and disclaimers have to be worked out, I'm going to keep pushing for this as Daisy needs to be in school occasionally, she needs the social interaction and she especially needs the access to the specialist facilities her school offers (it is a specialist school for children with vision impairments).
Last Friday the ward did a fundraiser for Comic Relief Red Nose Day, Daisy and I had the best day. The nurses made her a cute T shirt and she dressed up in Mini Mouse ears, a ballet tutu and wings. We love watching the Comic Relief on TV and again I was struck by how fortunate Daisy is in the lottery of life. Had she been born in the third world there is no way she would be alive today, I know I knock the NHS sometimes but I am so grateful for the fantastic free treatment we get. Our hospital is only 12 minutes drive away and then we have access to many world class facilities in specialist hospitals in London..... anyway, watching Comic Relief made me realise, sometimes I get down about things but the bigger picture is that Daisy has truly enriched our lives, and changed them. I found this quote the other day that sums up how Daisy has taught us to cherish the little things and live for the moment;
One day at a time- this is enough. Do not look back and grieve over the past, for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful that it will be worth remembering
(Ida Scott Taylor)
Yesterday we had a beautiful thirty minutes when Daisy was allowed off her TPN and was just attached to her enteral pump - we walked a circuit around the hospital as a family. This was the best thing ever, enjoying an early spring evening with my husband and all four children - a beautiful moment to keep us going through the tough times.
28 February 2009
I was affected in a way greater than I realised at the time by the news of David Cameron's son's death this week. Here were two parents given every privelege in life but still facing the struggles Andy and I face week in week out. The frantic dashes to hospital, the endless hospital appointments, the meds, the waiting for results, the hope, the worry...... and for them to leave hospital for one last time without their precious son. I thought back to our worrying time with Daisy a few weeks back and how it could have been the same. The reality is that illness and disability does not discriminate .... so many families like ours face the same challenges week in week out, and yet we manage to get on with life and keep our heads above water. Following Ivan's passing there were lots of interviews with parents of disabled children on the TV and in the papers, over and over the same answers came out - how do you cope? - because there is no other choice, you have to - whether you are the leader of the opposition, the Prime Minister (who himself lives each day with the memory of his first child who died prematurely and the challenges faced by his youngest child who has cystic fibrosis) or whether you are Steph & Andy Nimmo of Wimbledon. Andy goes to work , I go to the hospital, we get on with things, and colleagues, friends, family don't really know what we are facing day by day - apart from that small group of friends we now have who are also facing their own challenges with their own child. In so many ways I feel blessed to have Daisy, suddenly the spotlight was on families of children with disabilities last week and I felt that I was a member of a very special club who could really understand and empathise with the Camerons because there but for the grace of God...........................
We have had our usual share of ups and downs with Daisy since my last post. We were very excited to get her enteral feeding to 28mls an hour, however as always my daughter does not do things by the book and this includes showing us whether or not she is tolerating her feeds. After lulling us into a false sense of security for a week or so, she started to vomit and her tummy bloated up. Hoping that it was just a tummy bug picked up as a result of being able to leave her room, we waited for test results - all of which came back negative for every bug that she may have caught. So we pushed her feed volume back down to 21mls an hour again and have gone back to the drawing board. She seems to be tolerating the lower volume much better confirming that her stomach does not work properly and that she would benefit from jejenal feeding, bypassing her stomach altogether and feeding her directly into the top of her intestine. The procedure to create this new opening will be done at the end of March when she goes back to Rainforest ward at GOS. At the same time she will have an upper and lower endoscopy and we will know if the drug treatments she has been on have worked. I'm really hoping that we will start to make some plans for coming home as well. It will take such a long time to get everything in place that I want the planning to start now otherwise we are in real danger of hitting the summer holidays with Daisy still in hospital.
We were supposed to go to Chase this weekend for our re-booked respite following Daisy's near fatal infection a month ago. This time it was Xanthe's birthday and for the second time I had to meet the children from school and tell them that our break to Chase had been cancelled. This time it was cancelled because there were two emergency admissions for end of life care. Ultimately this is what Chase is all about, we may be in that situation one day so I really did not mind us being cancelled, I'm just focussing on the the next GOS visit. To make things up to Xanthe I rapidly organised a birthday party for her and while Andy sat with Daisy, Jules played at a friend's house and Theo plodded on with his homework I had a nice girly afternoon with Xanthe and her friends at the cinema. Chase has been rebooked for April so I'm really hoping we can actually make it, Christmas seems such a long time ago and we are in dire need of some family time together, the children are fed up of having to be dragged up to the hospital and I'm fed up of trying to divide myself into a million pieces for everyone. Sometimes I just wish I could just wave a magic wand and this would all be over and Daisy would be pottering around the house again just like she used to.......
We have had our usual share of ups and downs with Daisy since my last post. We were very excited to get her enteral feeding to 28mls an hour, however as always my daughter does not do things by the book and this includes showing us whether or not she is tolerating her feeds. After lulling us into a false sense of security for a week or so, she started to vomit and her tummy bloated up. Hoping that it was just a tummy bug picked up as a result of being able to leave her room, we waited for test results - all of which came back negative for every bug that she may have caught. So we pushed her feed volume back down to 21mls an hour again and have gone back to the drawing board. She seems to be tolerating the lower volume much better confirming that her stomach does not work properly and that she would benefit from jejenal feeding, bypassing her stomach altogether and feeding her directly into the top of her intestine. The procedure to create this new opening will be done at the end of March when she goes back to Rainforest ward at GOS. At the same time she will have an upper and lower endoscopy and we will know if the drug treatments she has been on have worked. I'm really hoping that we will start to make some plans for coming home as well. It will take such a long time to get everything in place that I want the planning to start now otherwise we are in real danger of hitting the summer holidays with Daisy still in hospital.
We were supposed to go to Chase this weekend for our re-booked respite following Daisy's near fatal infection a month ago. This time it was Xanthe's birthday and for the second time I had to meet the children from school and tell them that our break to Chase had been cancelled. This time it was cancelled because there were two emergency admissions for end of life care. Ultimately this is what Chase is all about, we may be in that situation one day so I really did not mind us being cancelled, I'm just focussing on the the next GOS visit. To make things up to Xanthe I rapidly organised a birthday party for her and while Andy sat with Daisy, Jules played at a friend's house and Theo plodded on with his homework I had a nice girly afternoon with Xanthe and her friends at the cinema. Chase has been rebooked for April so I'm really hoping we can actually make it, Christmas seems such a long time ago and we are in dire need of some family time together, the children are fed up of having to be dragged up to the hospital and I'm fed up of trying to divide myself into a million pieces for everyone. Sometimes I just wish I could just wave a magic wand and this would all be over and Daisy would be pottering around the house again just like she used to.......
23 February 2009
Given the time elapsed between this post and the last one you would be right in guessing we have just had half term (let the juggling commence!). As always the complete lack of strategic planning on our behalf (suprising when you bear in mind we both have - or in my case, had, roles involving strategic planning) meant that Andy had not booked any holiday and I was very light on respite time (of course everyone wants respite during half term). Anyway, Grandma (my mother - think the Jennifer Saunders character in abfab with a welsh accent) came to the rescue and had Theo to stay for a week which included attending a Blues Brothers tribute night (he fell asleep at the table!), sitting in a Ferrari - he's moved his obsession from Dr Who to Top Gear and viewing 1,600 videos on You Tube! Xanthe had two sleepovers and a day with a friend - all of which involved experimenting with copious amounts of make up.
Jules made it through half a day at the holiday club before nearly knocking himslef unconcious on a radiator while diving for a football. Having spent considerable time in hospital now I know that the fact that he cried straight away was a good sign and hopefully no permanent damage has been done. It is however difficult to tell the difference between genuine delirium and just stream of conciousness with Jules , although I'm opting for the latter.
In massive contrast to my last post, Daisy has had a fantastic week. We have been able to push her milk volume up more and more (this is the feed she receives via her gastrostomy button directly into her tummy). She remains on 24 hour TPN with some gastrostomy feeds. This in itself is a massive breakthrough. She is still on her nuclear strength antibiotics, and, although I hate her being on them I have to admit that the IV immunosuppressants and steroids seem to be doing the trick - I hope. Her latest blood cultures are negative which is great as hopefully she has cleared those nasty bugs from her bloodstream. I say hopefully as the problem is no-one wants to give the nod to take her off the antibiotics. The pattern seems to be with Daisy is for a week or so without antibiotics before another infection kicks in. This was the case over the summer before her hospitalisation so it's not even since having a Hickman line. Her main consultant is back tomorrow (having also had to juggle her childcare arrangements last week, it's why we get on so well, in many ways we share similar worries!) and the consultant microbiologist wants to brainstorm a plan with her. I feel I need to send this consultant microbiologist a picture of Daisy, he has received so many samples of bodily fluid from her over the past few years and has never met her, but he, like so many of Daisy's team, is caught up in her life.
Daisy feeling better and stronger brings its own challenges, she is no longer content just to lie in bed and watch Cbeebies, she wants to get up and be busy. Just like the rest of my children she is not a fan of daytime naps so the days are long. I am her teacher, physiotherapist, speech therapist, vision teacher, interpreter, nurse (for some things!) as well as her mummy. I am waiting for the powers to be to sort out the bureaucracy so that I can just have one role of mummy but in the meantime, and in the interests of not losing any more time with her development, I do everyone's job (for no financial return other than a smile). The best thing is that we have been able to venture out of her cubicle. This is such a milestone and for Daisy is like discovering a whole new world. We have visited the nursing station, looked at the children in the bays, taken in the parents room , checked out the doctor's office and most exciting of all, been to the playroom!!!!! Of course now she wants so spend all day out and about on the ward, with someone behind her wheeling her IV pole loaded with TPN, enteral feed, syring driver and someone next to her holding her hand as she is so unsteady on her feed (did I mention that ontop of everything she has a problem with her vestibular/balance function?).
Being immunosuppressed means that Princess Daisy cannot always have her wish, particularly as the ward is currently full of cases of diarhea and vomiting. So the onus is on me to be children's entertainer again. This is proving somewhat difficult as the TV in her room is once again stuck on Channel 5 and I'm not sure that the storylines in Hollyoaks are quite a suitable replacement for "In the Night Garden" on Cbeebies.....
Jules made it through half a day at the holiday club before nearly knocking himslef unconcious on a radiator while diving for a football. Having spent considerable time in hospital now I know that the fact that he cried straight away was a good sign and hopefully no permanent damage has been done. It is however difficult to tell the difference between genuine delirium and just stream of conciousness with Jules , although I'm opting for the latter.
In massive contrast to my last post, Daisy has had a fantastic week. We have been able to push her milk volume up more and more (this is the feed she receives via her gastrostomy button directly into her tummy). She remains on 24 hour TPN with some gastrostomy feeds. This in itself is a massive breakthrough. She is still on her nuclear strength antibiotics, and, although I hate her being on them I have to admit that the IV immunosuppressants and steroids seem to be doing the trick - I hope. Her latest blood cultures are negative which is great as hopefully she has cleared those nasty bugs from her bloodstream. I say hopefully as the problem is no-one wants to give the nod to take her off the antibiotics. The pattern seems to be with Daisy is for a week or so without antibiotics before another infection kicks in. This was the case over the summer before her hospitalisation so it's not even since having a Hickman line. Her main consultant is back tomorrow (having also had to juggle her childcare arrangements last week, it's why we get on so well, in many ways we share similar worries!) and the consultant microbiologist wants to brainstorm a plan with her. I feel I need to send this consultant microbiologist a picture of Daisy, he has received so many samples of bodily fluid from her over the past few years and has never met her, but he, like so many of Daisy's team, is caught up in her life.
Daisy feeling better and stronger brings its own challenges, she is no longer content just to lie in bed and watch Cbeebies, she wants to get up and be busy. Just like the rest of my children she is not a fan of daytime naps so the days are long. I am her teacher, physiotherapist, speech therapist, vision teacher, interpreter, nurse (for some things!) as well as her mummy. I am waiting for the powers to be to sort out the bureaucracy so that I can just have one role of mummy but in the meantime, and in the interests of not losing any more time with her development, I do everyone's job (for no financial return other than a smile). The best thing is that we have been able to venture out of her cubicle. This is such a milestone and for Daisy is like discovering a whole new world. We have visited the nursing station, looked at the children in the bays, taken in the parents room , checked out the doctor's office and most exciting of all, been to the playroom!!!!! Of course now she wants so spend all day out and about on the ward, with someone behind her wheeling her IV pole loaded with TPN, enteral feed, syring driver and someone next to her holding her hand as she is so unsteady on her feed (did I mention that ontop of everything she has a problem with her vestibular/balance function?).
Being immunosuppressed means that Princess Daisy cannot always have her wish, particularly as the ward is currently full of cases of diarhea and vomiting. So the onus is on me to be children's entertainer again. This is proving somewhat difficult as the TV in her room is once again stuck on Channel 5 and I'm not sure that the storylines in Hollyoaks are quite a suitable replacement for "In the Night Garden" on Cbeebies.....
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