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!
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.
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....
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.
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.......
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.....
A close call
This post so very nearly could have been the worst one I ever had to post, as it was, it has taken me a while to think back over what happened last week and how close we were to losing Daisy...
The beginning of the week had been lovely, the snow had really brightened everyone's spirits and Daisy enjoyed looking at (if not touching) the bowl of snow the nurses brought in for her. We had a great time with all the children together on Tuesday as Andy managed to get into work and I spent the day together with all four children in Daisy's room which was suprisingly manageable. On Thursday Daisy was quite clingy and pale and I kept meaning to ask the doctors what her haemoglobin level was as I wondered if she was at the point of needing another transfusion. I thought if it was the case it would give her a boost ready for our weekend at Chase Hospice.
It was Jules who discovered she had spiked a bit of a temperature. I brought him and Xanthe to the hospital straight after school and he was taking our temperatures and playing around with the stethoscope (as you do when you have spend the best part of your life since the age of 2 entertaining yourself in your sister's hospital room). We gave her some calpol and when I came back later in the evening she was sleeping peacefully but still a bit hot, after more calpol the temp came down a bit and as it was 11pm and I hadn't packed a thing for our trip to Chase I went home.
Within half an hour of my head hitting the pillow the phone went, thank goodness Daisy's consultant was on call that night as a locum registrar was covering the ward. Daisy's temp had gone through the roof (40.5) and her blood pressure had dropped suddenly. She had been given a saline fluid bolus to restore her blood pressure and started on 2 of her usual antibiotics and an antifungal to cover all bases before the blood cultures came back. I rushed up to the hospital (greatful for my recent investment in Primark leisure wear which meant I did not have to change) to find her fast asleep and the room like a fridge to keep her temperature down. She slept quite well that night and by the morning just looked completely washed out.
I was still half hopeful that this was just another Daisy blip and we would be allowed to go to Chase. If Daisy was our only child then it would have been easy to cancel but it was the thought of letting the other 3 children down who were so desparate to spend some time together as a family and not have part time parents/siblings. However I knew things were serious when Daisy's consultant arrived and said she was worried about Daisy. I know as a mum of 3 herself she would be the first to ensure we had quality family time together, so if she was vetoing Chase we know it was bad.
I called Andy to ask him to get home early as the children would be disappointed and left Daisy at 3pm to collect them from school and tell them the bad news that we would not be going to Chase. Daisy was not well at all at 3pm and I really did not want to leave her but this was again my usual scenario of leave Daisy to deal with my other children or make frantic arrangements with very accomodating school-run mums to pick them up until I could get to them. Andy and I decided that this time we would break our rule of trying to be as open and honest about the situation with Daisy as possible and tell a white lie as to why Chase was cancelled. The children are still indignant that the staff at the Hospice could not get themselves organised to dig their way out of the snow (one day I will tell them!) - we did not want them to resent Daisy for scuppering yet another weekend although without Daisy they would not have been going to Chase in the first place (I guess without Daisy they would not even experience the number of ruined weekends however....).
By the time I returned to the hospital Daisy had deteriorated really rapidly - she was shaking with rigor, her extremities were freezing and her bp had gone through her boots again. Two consultants were on the ward discussing a plan for her and nurses and registrars were in and out of her room - I took one look and phoned Andy to get to the hospital straight away.
Daisy has had lots of tricky situations in her life but this is the first time ever I have looked at her and thought she was not going to make it - I have never seen her deteriorate so quickly and be so close to death. The doctors were trying fluid boluses to bring her BP back up but this was not working, she was shutting down, overcome with septic shock. An anaesthetist was bleeped to intubate her and the search began for a PICU bed. Of course to add to this it was Friday night and snowing, roads were in chaos and major motorways closed (as always happens when this country has extremes of weather) . There was no bed at GOS, Daisy's main specialist hospital, at one point Manchester was mentioned - good in that there is a specialist in her syndrome there, not so good in that it would have been a 4 hour trip in atrocious conditions. Eventually a bed was found in St Georges, 10mins by blue light down the road. Daisy was deteriorating rapidly and dopamine infusion was started, and, when the paediatric intensive care transfer team arrived, noradrenaline. This seemed to do the trick and suddenly she turned the corner and we dared to breath a tiny sigh of relief. It was decided she did not need to be intubated and she was blue lighted to St Georges PICU, even managing a smile as she was wheeled on the stretcher out of the ward.
In the same way she goes downhill, Daisy bounces back very quickly. We were really worried that the infection was in her Hickman line and it would have to be taken out even though it was only put in two weeks ago. However she responded well in PICU and the bug was found to be one from her gut that had leaked into her bloodstream and overwhelmed her body. We have subsequently found out that if it had got into her lungs death was a 100% certainty, as it was we had been dealing with only 50% odds of survival. And once again the girl with 9 lives beat the odds, but the cost to Andy and I was considerably more grey hairs and worry lines.
So Daisy is back in Queen Mary's now, having charmed the team at St Georges, and back on lots of horrible antibiotic infusions which have toxic side effects which I try not to think about. She is amazing however - anyone else who had cheated death like she had would still be lying in bed, weak and feeble, but she has lots of living to do and is raring to go. She is back on feeds into her gastrostomy and as of today is on the momentous rate of 6mls an hour. In fact during all of last weeks problems the one thing to keep working was her tummy (albeit with only 3mls an hour going it), so Andy and I are taking some comfort that this may be improving.
We have been quite shell shocked since last weeks events, at the time you are carried along with the adrenaline of the situation, and on reflection wonder if it is only the fact that your love as parents makes you think that the worst could happen. However reality set in when each of the doctors who had been involved in rescusitating Daisy told me how close a call it had been and that they had thought she might not make it...........
We are so determined to get on with things now and get Daisy home at some point this year. We now have a date to go back to GOS at the end of March for another scope to see if the damage to her gut is improving and in the meantime we can try and push the gastrostomy feeds to help her system work and allow her the possibility at some stage of time off the TPN.
It's almost business as usual again now - this weeks problem remains high blood pressure and the plan now is for her to have a 24 ambulatory blood pressure cuff fitted to look into the pattern of her highs and lows, and then send her to a renal consultant at GOS to decide which drug to start her on to help manage it. She is also due her annual cardiac check up on her mild cardimyopathy and this is always preceded by a 24 hour ecg, so there will be at least a couple more nights of her being attached to extra monitors and tangled up in wires.
Now we know she is in hospital at least until the summer we have been able to get more permanent plans in place for Daisy's education provision. We held a multi-disciplinary meeting today to discuss her care - 18 people attended all involved in different areas of her life and this did not include all the medical doctors she sees. It is incredible the impact she has not just on our lives but on the lives of those involved in her care, this was so evident last week when we nearly lost her, so many people on the ward told me how worried and upset they had been and how relieved they were that she was alright, in four years Daisy has touched a lot of lives and while she is determined to keep us on our toes she is surrounded by the most fantastic team of people who just want her to win this battle and get on with life
The beginning of the week had been lovely, the snow had really brightened everyone's spirits and Daisy enjoyed looking at (if not touching) the bowl of snow the nurses brought in for her. We had a great time with all the children together on Tuesday as Andy managed to get into work and I spent the day together with all four children in Daisy's room which was suprisingly manageable. On Thursday Daisy was quite clingy and pale and I kept meaning to ask the doctors what her haemoglobin level was as I wondered if she was at the point of needing another transfusion. I thought if it was the case it would give her a boost ready for our weekend at Chase Hospice.
It was Jules who discovered she had spiked a bit of a temperature. I brought him and Xanthe to the hospital straight after school and he was taking our temperatures and playing around with the stethoscope (as you do when you have spend the best part of your life since the age of 2 entertaining yourself in your sister's hospital room). We gave her some calpol and when I came back later in the evening she was sleeping peacefully but still a bit hot, after more calpol the temp came down a bit and as it was 11pm and I hadn't packed a thing for our trip to Chase I went home.
Within half an hour of my head hitting the pillow the phone went, thank goodness Daisy's consultant was on call that night as a locum registrar was covering the ward. Daisy's temp had gone through the roof (40.5) and her blood pressure had dropped suddenly. She had been given a saline fluid bolus to restore her blood pressure and started on 2 of her usual antibiotics and an antifungal to cover all bases before the blood cultures came back. I rushed up to the hospital (greatful for my recent investment in Primark leisure wear which meant I did not have to change) to find her fast asleep and the room like a fridge to keep her temperature down. She slept quite well that night and by the morning just looked completely washed out.
I was still half hopeful that this was just another Daisy blip and we would be allowed to go to Chase. If Daisy was our only child then it would have been easy to cancel but it was the thought of letting the other 3 children down who were so desparate to spend some time together as a family and not have part time parents/siblings. However I knew things were serious when Daisy's consultant arrived and said she was worried about Daisy. I know as a mum of 3 herself she would be the first to ensure we had quality family time together, so if she was vetoing Chase we know it was bad.
I called Andy to ask him to get home early as the children would be disappointed and left Daisy at 3pm to collect them from school and tell them the bad news that we would not be going to Chase. Daisy was not well at all at 3pm and I really did not want to leave her but this was again my usual scenario of leave Daisy to deal with my other children or make frantic arrangements with very accomodating school-run mums to pick them up until I could get to them. Andy and I decided that this time we would break our rule of trying to be as open and honest about the situation with Daisy as possible and tell a white lie as to why Chase was cancelled. The children are still indignant that the staff at the Hospice could not get themselves organised to dig their way out of the snow (one day I will tell them!) - we did not want them to resent Daisy for scuppering yet another weekend although without Daisy they would not have been going to Chase in the first place (I guess without Daisy they would not even experience the number of ruined weekends however....).
By the time I returned to the hospital Daisy had deteriorated really rapidly - she was shaking with rigor, her extremities were freezing and her bp had gone through her boots again. Two consultants were on the ward discussing a plan for her and nurses and registrars were in and out of her room - I took one look and phoned Andy to get to the hospital straight away.
Daisy has had lots of tricky situations in her life but this is the first time ever I have looked at her and thought she was not going to make it - I have never seen her deteriorate so quickly and be so close to death. The doctors were trying fluid boluses to bring her BP back up but this was not working, she was shutting down, overcome with septic shock. An anaesthetist was bleeped to intubate her and the search began for a PICU bed. Of course to add to this it was Friday night and snowing, roads were in chaos and major motorways closed (as always happens when this country has extremes of weather) . There was no bed at GOS, Daisy's main specialist hospital, at one point Manchester was mentioned - good in that there is a specialist in her syndrome there, not so good in that it would have been a 4 hour trip in atrocious conditions. Eventually a bed was found in St Georges, 10mins by blue light down the road. Daisy was deteriorating rapidly and dopamine infusion was started, and, when the paediatric intensive care transfer team arrived, noradrenaline. This seemed to do the trick and suddenly she turned the corner and we dared to breath a tiny sigh of relief. It was decided she did not need to be intubated and she was blue lighted to St Georges PICU, even managing a smile as she was wheeled on the stretcher out of the ward.
In the same way she goes downhill, Daisy bounces back very quickly. We were really worried that the infection was in her Hickman line and it would have to be taken out even though it was only put in two weeks ago. However she responded well in PICU and the bug was found to be one from her gut that had leaked into her bloodstream and overwhelmed her body. We have subsequently found out that if it had got into her lungs death was a 100% certainty, as it was we had been dealing with only 50% odds of survival. And once again the girl with 9 lives beat the odds, but the cost to Andy and I was considerably more grey hairs and worry lines.
So Daisy is back in Queen Mary's now, having charmed the team at St Georges, and back on lots of horrible antibiotic infusions which have toxic side effects which I try not to think about. She is amazing however - anyone else who had cheated death like she had would still be lying in bed, weak and feeble, but she has lots of living to do and is raring to go. She is back on feeds into her gastrostomy and as of today is on the momentous rate of 6mls an hour. In fact during all of last weeks problems the one thing to keep working was her tummy (albeit with only 3mls an hour going it), so Andy and I are taking some comfort that this may be improving.
We have been quite shell shocked since last weeks events, at the time you are carried along with the adrenaline of the situation, and on reflection wonder if it is only the fact that your love as parents makes you think that the worst could happen. However reality set in when each of the doctors who had been involved in rescusitating Daisy told me how close a call it had been and that they had thought she might not make it...........
We are so determined to get on with things now and get Daisy home at some point this year. We now have a date to go back to GOS at the end of March for another scope to see if the damage to her gut is improving and in the meantime we can try and push the gastrostomy feeds to help her system work and allow her the possibility at some stage of time off the TPN.
It's almost business as usual again now - this weeks problem remains high blood pressure and the plan now is for her to have a 24 ambulatory blood pressure cuff fitted to look into the pattern of her highs and lows, and then send her to a renal consultant at GOS to decide which drug to start her on to help manage it. She is also due her annual cardiac check up on her mild cardimyopathy and this is always preceded by a 24 hour ecg, so there will be at least a couple more nights of her being attached to extra monitors and tangled up in wires.
Now we know she is in hospital at least until the summer we have been able to get more permanent plans in place for Daisy's education provision. We held a multi-disciplinary meeting today to discuss her care - 18 people attended all involved in different areas of her life and this did not include all the medical doctors she sees. It is incredible the impact she has not just on our lives but on the lives of those involved in her care, this was so evident last week when we nearly lost her, so many people on the ward told me how worried and upset they had been and how relieved they were that she was alright, in four years Daisy has touched a lot of lives and while she is determined to keep us on our toes she is surrounded by the most fantastic team of people who just want her to win this battle and get on with life
I have decided that even if we gave Daisy sugar tablets she would have an unusual reaction to them (probably drop her sugar levels...), and so it is with her new drug cocktail - the potent combination of iv immunosuppressants and steroids. So this week's symptom I have had to become an expert on is (drum roll)......dangerously high blood pressure. In fact I have now become so obsessed with blood pressure readings and trying to find some sort of trend in why Daisy's bp has been going sky high that I have been taking the whole family's blood pressure (I am please to report that mine is in the very healthy range). So we have been tweaking the doses of meds and today following a conversation between Daisy's local consultant and her GOS consultant we have switched the steroids from IV to enteral (through her gastrostomy tube). Her bp has lowered a bit as a result but it may take a while for it to normalise (hopefully). We are also trying the achieve certain levels of the immunosuppressant drugs in her body in order to counter the out of control immune reaction in her gut (basically her body is attacking itself which is causing the massive inflammation and ulceration). Of course this being Daisy establishing these levels is not a test that our hospital microbiology lab performs day in day out, they run them twice a week so we all wait with bated breath the see if she is getting the right level of the drug to do the trick.... The word from GOS is that she needs to be on this therapy for 6 weeks before they can have a look at her insides again and see if it has done the trick.
All this means that inspite of now being absolutely clear of the MRSA (I promise that's the last time I mention it), Daisy remains confined to an isolation room for a while longer because of the risk of her picking up an infection. This is becoming increasingly difficult both for Daisy and for me - I am essentially Daisy's teacher, entertainer, carer and mother (replaced by Andy on the weekends) and sometimes I just go a bit stir crazy, particularly as prior to all of this I was working full time with a successful marketing career. Daisy is doing really well at the moment and, although she is physically very weak, needs more social interaction and opportunities to move around without the 4 tubes that are connected to her more or less permanently. There is a bit of light at the end of the tunnel in that we have re-started gastrostomy feeds - initially at 1ml an hour we now have pushed it up to 2mls and so far so good. Last time we tried this Daisy's tummy bloated up and she was vomiting and full of wind - after a full week on gastrostomy feeding she has been symptom free so this is a good sign. Fortunately the liver function problems she had previously seem to have reversed and she does not look jaundiced and is not pouring bile out of her tube.
I'm starting to get impatient (or in-patient) and wanting to get home but I know from bitter experience that if we push Daisy too much then we will undo all of the good work. At least this weekend (weather permitting) we'll get a little break as we are all going to Chase Hospice. Daisy will go by ambulance on Friday morning and I will follow on Friday evening with the rest of the children, closely followed later in the evening by Andy. I asked Jules what he was looking forward to doing at Chase, thinking he would say "playing Xbox all weekend" but his response was "hug Daisy all day and all night". This time has been so hard on them, Andy and I can at least talk to doctors, search the internet and focus on fighting Daisy's corner but all our other children get is an occassional visit with Daisy when she is up to it and to wait and wait for news on when she will come home. It's like being in limbo - we can't give them answers, all we say is that everyone is working really hard to make it possible and when she is ready and the doctors agree, then Daisy will come home.
Of course coming home will be so different - we have to get to a point where Daisy can tolerate 8 hours off her TPN, meaning that for 16 hours of the day she will be on it. This is not a straightforward thing, Andy and I will need to be trained beforehand and signed off by GOS and Daisy's bedroom will need to become more like a hospital room and less like a playroom. However we will do anything now to get her home and I know that Daisy will suprise us in time by becoming stronger and stronger and overcoming all these obstacles that life is throwing her. While this time is so trying, it's Daisy and her wonderful fighting spirit that is keeping all of us going....
All this means that inspite of now being absolutely clear of the MRSA (I promise that's the last time I mention it), Daisy remains confined to an isolation room for a while longer because of the risk of her picking up an infection. This is becoming increasingly difficult both for Daisy and for me - I am essentially Daisy's teacher, entertainer, carer and mother (replaced by Andy on the weekends) and sometimes I just go a bit stir crazy, particularly as prior to all of this I was working full time with a successful marketing career. Daisy is doing really well at the moment and, although she is physically very weak, needs more social interaction and opportunities to move around without the 4 tubes that are connected to her more or less permanently. There is a bit of light at the end of the tunnel in that we have re-started gastrostomy feeds - initially at 1ml an hour we now have pushed it up to 2mls and so far so good. Last time we tried this Daisy's tummy bloated up and she was vomiting and full of wind - after a full week on gastrostomy feeding she has been symptom free so this is a good sign. Fortunately the liver function problems she had previously seem to have reversed and she does not look jaundiced and is not pouring bile out of her tube.
I'm starting to get impatient (or in-patient) and wanting to get home but I know from bitter experience that if we push Daisy too much then we will undo all of the good work. At least this weekend (weather permitting) we'll get a little break as we are all going to Chase Hospice. Daisy will go by ambulance on Friday morning and I will follow on Friday evening with the rest of the children, closely followed later in the evening by Andy. I asked Jules what he was looking forward to doing at Chase, thinking he would say "playing Xbox all weekend" but his response was "hug Daisy all day and all night". This time has been so hard on them, Andy and I can at least talk to doctors, search the internet and focus on fighting Daisy's corner but all our other children get is an occassional visit with Daisy when she is up to it and to wait and wait for news on when she will come home. It's like being in limbo - we can't give them answers, all we say is that everyone is working really hard to make it possible and when she is ready and the doctors agree, then Daisy will come home.
Of course coming home will be so different - we have to get to a point where Daisy can tolerate 8 hours off her TPN, meaning that for 16 hours of the day she will be on it. This is not a straightforward thing, Andy and I will need to be trained beforehand and signed off by GOS and Daisy's bedroom will need to become more like a hospital room and less like a playroom. However we will do anything now to get her home and I know that Daisy will suprise us in time by becoming stronger and stronger and overcoming all these obstacles that life is throwing her. While this time is so trying, it's Daisy and her wonderful fighting spirit that is keeping all of us going....
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