2nd Feb 2016
Rosie and Mummy made an unplanned trip to hospital today and liked it so much we stayed!
Rosie is in a high dependency unit on Bear Ward, having meds intravenously via a canula as they are concerned about her fluid retention.
Think we will be here for a few days from what doctors have said but will know more tomorrow
3rd Feb 2016
Shopping for clothes as now spending a few days at GOSH with Rosie
3rd Feb 2016
Much brighter having sneezed her feeding tube out and a bit more comfortable now fluid has started to reduce. We have managed a play in the play room this morning. Going to theatre at some point today to have a Hickman Line fitted and need to see how she goes over the next day or so before deciding on next steps x
5th Feb 2016
Today we need your love, support and prayers. Our little Rosie is going into theatre for a 6-8 hour operation to fit a Berlin mechanical Heart.
Her own heart is no longer working sufficiently for her to carry on without it so the mechanical heart will hopefully keep her going until a donor can be found for transplant. It is an incredibly risky operation. Rosie will be ventilated for some time after and is likely to be in intensive care for a couple of weeks after the op if all goes to plan.
Theatre is booked for 12 o'clock. As you all know, our Rosie is a little fighter so we are sure she will get through this.
Thank you all for your love, support and prayers x x x
5th Feb 2016
Rosie is back from theatre. Op went as well as could have, no cardiac incidents whilst in theatre, no complications. Only one Berlin Heart on left side, whereas they thought she might have to have two. She is on a ventilator, obviously incredibly heavily sedated. Chest is still open. Next 12 hours concerns are that she stays stable as she is at moment, bleeding and whether right side of heart copes ok. Still very risky, rocky road etc but the best we could have hoped for so far.
Thank you all for your love, support and prayers today, so far it has worked x x x
6th Feb 2016
Rosie had an uneventful night, which is the best we can hope for at present. Still on the ventilator and heavily sedated, nurses working to keep her stable. All continues to be as good as could be, fingers crossed it continues that way x
7th Feb 2016
Rosie had another good night. Still on a whole cocktail of meds (literally about 20), which they continue to tweak to keep her stable. They started the first of the anti coagulant meds last night and she has responded well. Will introduce the next later today if blood clot tests come back ok throughout the day. Main issue is her blood pressure, which keeps swinging from too high to too low and they aren't sure why.
Berlin heart is performing well on left side, right side struggling but better than yesterday so they are hoping this continues to improve.
Go Rosie, keep doing what you're doing because you are doing great. Our tough little cookie x
8th Feb 2016
Another stable, uneventful night, woo hoo. The ventilator was turned down slightly yesterday and Rosie tolerated it, which is great. She has also responded well to the Heparin, the anti-coagulant drug and has successfully started another last night. Hoping to close the chest today, which if successful is another big step forward. Thank you all so much for your messages of support, sorry for not responding to them all, there are too many and I'm often too shattered too but please rest assured that I do read them all. Lots of love x
9th Feb 2016
Chest closed successfully yesterday and an echo showed that the heart has coped well with it. Hoping to start weaning Rosie off the nitric oxide today and start to lower the ventilator and some of the sedation. The concern at the moment is that she has a very high temperature so they have started some antibiotics and they have found some fibrins in her Berlin heart chamber which can lead to blood clots (we really don't want those) so keeping a very close eye on her bloods today!
9th Feb 2016
Big day today, George and Grace @ GOSH today for screening. Got to see their little fighter sister and were very well behaved.
10th Feb 2016
Ward rounds done. Dr's are very pleased with Rosie's progress overnight, they have booked radiology theatre for Friday to have a Hickman line fitted. (Going in via needle not surgery) platelet count good this morning. Reduced the oxygen levels and support they are giving her (she has tolerated it well) should be able to come off the ventilator after the Hickman line is fitted. Just having Physio at the moment.
11th Feb 2016
Rosie didn't have a good night and continued to deteriorate this morning. Numbers rubbish, Berlin heart not working properly and an echo showed lots of fluid round her heart. Surgeons were called and she went back to theatre. They were concerned that the right side of her heart couldn't cope and a second device might be required. However, having reopened her chest and inserted three drains, her numbers have improved. They are going to leave her like this probably for a few days and see how she does. Keep fighting Rosie X
12th Feb 2016
Tough day yesterday. Rosie ended up having two chest explorations, one in the morning, the 2nd last night. They finished at midnight, removed lots of clots, stemmed a couple of bleeds and inserted a 4th chest drain. She has been stable since and doctors are happy this morning. Fingers crossed she has a stable, uneventful day, then they will look to close the chest tomorrow or Sunday.
13th Feb 2016
Rosie had a stable, uneventful day and night, phew! Bleeding looks good, numbers look good. Hoping to attempt chest closure again tomorrow if she remains stable today. Thank you all for your love and support x x x
14th Feb 2016
A quiet night for Rosie, blood pressures dropped a little low so a small increase of Adrenaline to bring back up again. Much of the same planned for today, Rest Rest Rest and try to reduce the fluids in her so they can close the chest again.
Thanks for your continued support
15th Feb 2016
Rosie had an up and down day yesterday. At one point in the afternoon her numbers dropped so they suctioned more fluid from her chest and changed the dressings which helped. She has had a stable night but they need to discuss next steps this morning. Attempting chest closure is good re bleeding and risk of infection but might put too much pressure on the right side of her heart which is already struggling. Just need to wait and see what they think during ward rounds.
16th Feb 2016
Rosie had another stable night. Finally after lots of debate this morning and an echo to assess how right side of heart is coping, they are looking to close the chest again today. Fingers crossed it works this time x
16th Feb 2016
Rosie's Chest is now closed took longer than planned however numbers are good. Hoping for an uneventful night.
17th Feb 2016
Rosie had an ok night. Blood pressure keeps dropping when they give one of the anti coagulant meds so they are hatching a plan to deal with that. Berlin heart performing well, a couple of fibrins to keep an eye on. CVP is good (a good indicator of how right side of heart is performing). She has tolerated them decreasing some sedation (although nurse said it it will take a while to wean her off the morphine as she has been on it for over a week). Waiting for ward rounds but so far, so good. Go Rosie!
18th Feb 2016
Ward rounds done. Rosie had a good night and doctors are happy with her progress. She has tolerated chest closure and them lowering sedation. They have weaned her off the nitric oxide completely overnight and have reduced the pacing wires down, hoping that her right side will cope without their added support. Plan for today is to continue weaning her sedation, whilst keeping numbers stable. Then hopefully chest drains out tomorrow, a Hickman line early next week and taken off ventilator by early next week.
19th Feb 2016
Ward rounds done. All happy with Rosie. Plan is to wean further on ventilation and sedation. Chest drains to stay for now but will come back to us with a plan for removing them and a plan for fitting Hickman line. They have taken the pacing off to see how well she copes without it and if numbers remain stable without pacing X
20th Feb 2016
Rosie had an unsettled night and started the day with a temperature and rash. However, both have now settled and she is currently sitting up in bed watching Dora the Explorer again! Doctors have just been (they have a lie in at the weekends) and they are very happy with Rosie. She has tolerated all the weaning really well so they are thinking about taking her off the ventilator completely. They will assesses again and decide in about 4 hours. Numbers all look good as does Berlin heart. Fingers crossed we will have our Rosie back in no time X
21st Feb 2016
Hoping for a restful, lazy Sunday! Rosie is currently asleep and we are hoping she will get some rest after a fairly hectic 15 hours! Yesterday afternoon the pacing wires were removed, there was some bleeding as a result but seemed OK. Early evening, they took Rosie off the ventilator. She has tolerated this well and is now on a different machine, which provides oxygen to help her breath. The change in pressures from one machine to the other, caused bleeding and the surgeons were called to assess. After working their magic the bleeding has stopped. Being off the ventilator is great for the right side of Rosie's heart, function should continue to improve . Echo and X-Rays through the night show the left side has acquired some fluid. This isn't great as risk of opening her up again is very great. Lots of visits this morning from surgeons, cardiologists, doctors and consultants. Everyone on standby to act if they need to, however hoping that a quiet, restful day and Rosie's body will sort itself out, which we are sure will be the case knowing what a little fighter she is! So, here's to a restful, lazy Sunday afternoon! X X X
22nd Feb 2016
A later daily update than normal but Rosie has been busy in theatre today.
This morning Rosie's breathing was very laboured and her Berlin Heart function was very weak. After a number of X Ray's and Echos the team agreed they needed to take urgent action. Rosie had fluid around her left ventricle (heart) putting pressure on the chambers. Fluid and air around her left lung causing a partial collapse of the lung. It looked like they were going to re-open the chest however the team placed her back on a ventilator and inserted a fourth drain direct into the area around her lung. This managed to to clear lots of the fluid around her lung and re-inflate it. It has also helped drain some of the fluid around her heart. She is currently stable and sleeping and going to be observed closely for the next 12 hours. Another rollercoaster day in CICU
23rd Feb 2016
Pleased to report that Rosie (and mummy and daddy) had a stable, restful night.
GOSH gave Rosie some sedation so she has had a good sleep. Numbers look good, as does her colour, but we are still waiting on clotting results. Also waiting for the ward round this morning to discuss the next steps.
Thank you all for your continued love and support.
Let's make Organ Donation registration in England automatic
Many people have not signed up to become organ donors simply because they haven't got round to it or are not aware of the need to do so.
3 people die in the UK every day waiting for a transplant. At present around 7,000 people are waiting for an organ transplant but due to a shortage of organs up to 1000 of these will die waiting. This is completely unacceptable.
Would you accept an organ if you or your family needed one to stay alive?
If yes, please help us to get this issue at least raised for debate in Parliament by signing our petition... We only need around 1000 more names to really make a difference!
24th Feb 2016
Rosie had a CT scan yesterday to review the effusion around her heart and the air and fluid around her lung. Both have subsided since the 4th drain was fitted however a small amount of both still remains. Watching a team of 11 people move her onto the CT scanner was a bit like watching a F1 pit stop however a lot slower than 4 seconds! The plan is to let her rest and see if her body gets rid of the rest over the next 48 hours. Rosie has had a comfortable night lots of sleep and numbers have been stable. Will see what ward round brings but suspect it will be another day of resting before fitting a Hickman line on Thursday
25th Feb 2016
Rosie has had a good night last night, she slept well and her numbers look good, fibrins the same as yesterday and Berlin Heart still emptying and filling well. Her clotting is also within range. The ward round was also all good, they are happy with Rosie's progress and pleased she had a stable day and night. They are planning to fit a hickman line this afternoon or tomorrow depending on how busy the ward is, then if all goes well they will start weaning her off her sedation and ventilator tomorrow.
Highlight of the day was when she was awarded a certificate of bravery with Grumpy Care Bear on it!
26th Feb 2016
Rosie has had another stable night and the doctors are really pleased with her. Numbers look good, Berlin heart now filling and emptying consistently well and her colour is great. Hickman line is scheduled to be fitted today, having been bumped yesterday for an emergency. If all goes to plan, they are keen to start weaning her off the ventilator and morphine and think about removing the chest drains over the weekend. All good, go Rosie Roo X
27th Feb 2016
Rosie had a quiet night after finally having the Hickman line fitted yesterday. She got back from theatre at around 5:30 and has slept on and off without the need for any sedation overnight. Ward rounds were early this morning (Early for a Saturday) and today's plan is to have another X-ray to check the chest and tummy. If all OK will try to remove the ventilator later today. Chest drains will stay for at least another day. Mummy and Daddy have swapped over so Mummy gets some much needed George and Grace time and Daddy gets Rosie all to himself for the weekend.
28th Feb 2016
A very sleepy Rosie this morning. Had a long sleep last night only waking up between 3am and 5am for dressing change and bed change. Numbers remain good and Berlin Heart function is the strongest it's been. Still on ventilator as ran out of time yesterday to remove. Dr's just completed ward rounds and are very please with numbers and progress. Have planned to remove from the ventilator at lunchtime.
29th Feb 2016
Morning everyone, the big news from the weekend for Rosie is that she is now off of the ventilator and coping well with it which is a huge step forward. She Rosie continues to look great and had a good night although she did have to have an early wash this morning so was sitting up watching Dora and looking very comfy.
Next up was the Ward rounds and again we were told they are very happy with Rosie. She has been very sleepy this morning but she has a temperature and they think that is why. They want an X-ray and will then consider removing a couple of chest drains. Also want to remove her catheter. Her clotting is out of range again so tweaking heparin, aspirin and dipyridamole, liaising with haematology. Blood pressure is a little low so watching that and finally hb and oxygen in blood gases both low so watching that too and may need more blood products to adjust. All in all though they are happy.
The moment of the morning was when the nurse and mummy had just cleaned her and changed her position. Rosie had been told earlier that Nannie was coming up to see her today so when she woke up she said (in a very croaky voice) 'where's Nannie?'
So lovely to know she is still so switched on and so nice to think that she will be shouting her orders out to everyone again very soon! x
1st Mar 2016
Today's update is not just about Rosie, but about life in intensive care.
Rosie is in a bay with three other children. In our month here, we have seen a number of patients come and go, moving to other bays or up to Bear Ward. Yesterday, shortly after Nannie arrived, I witnessed the second cardiac arrest I have seen in the bay. The first, last week sadly did not have a positive outcome. Yesterday, we were asked to leave the bay as the amazing GOSH team came to the bedside of the child to perform miracles. They literally are able to bring theatre to the bed. I was allowed back in at about 10.30pm last night, only to be asked to leave again at 11pm as the theatre staff appeared again, preparing for another procedure on the child. So a long day of waiting, anxious about your own child and equally anxious about the other child that the surgeons were working on.
I arrived at 7.15am this morning to be told that the bay is again closed until 9.30am for another procedure on the same child.
Life in intensive care is hard. Hard when things aren't going to plan with your own child, hard when they are but they aren't for others. The doctors and nurses are amazing. The nurses are literally on the go for the whole 12 hours of their shift. The strength of the parents is amazing. You learn what every alarm is so you know which ones are serious and which aren't. You learn medical terminology which means you talk in code to outsiders but as parents of intensive care children you understand what things like CVP and HB mean. You share the highs and lows of other people's intensive care journey and it is emotionally and physically exhausting. I literally do not know how the nurses do it and have so much respect and admiration for them.
And so to Rosie. I will update later once I have seen her and have a full update from her medical team. My telephone call with her nurse told me that she is OK though. She needs some blood, her temperature is high so they are bringing it down with cold gloves and waiting for results to see if she has an infection. There was some air in her right lung yesterday so another X-ray today will show whether this has dislodged or whether surgeons need to do something about it. The usual ups and downs and ins and outs of intensive care.
Thinking of last weeks little angel, the little warrior who the surgeons are currently working on and my own little warrior who I hope to be able to cuddle very soon. x
2nd Mar 2016
Highlight of the day, mummy got to have cuddles with Rosie in the chair. The Berlin heart is working very well and Rosie's numbers are pretty good. There are a couple of concerns about Rosie's blood pressure, temperature and why she is so sleepy. Having a CT scan this afternoon to rule out any neurological issues. We are still off of the ventilator and now only have two chest drains, as two were removed yesterday so lots of positives and the usual highs and lows of life in intensive care X
2nd Mar 2016
Rosie had to go back to theatre today sadly. The CT scan showed a bleed on the left side of her brain. It was important that the neurological surgeons acted quickly so she was whisked off immediately. The procedure went well but now it is a long sit and wait while Rosie fights on. We will update when we can but it is most likely going to be the morning before we can really tell how it all went. Come on Rosie. we are all behind you X
3rd Mar 2016
A long and exhausting night for us and especially for Rosie. Delighted to report that she continues to be an absolute superstar, we are so very proud of her. Surgery last night removed the blood from the brain but it was more swollen than expected. Rosie was left overnight with the brain exposed to relieve the pressure, in the hope that the bleed ceased and the swelling reduced. Following a CT scan this morning, the neuro surgeon has confirmed that he is happy and no further surgery on Rosie's brain is required for now.
The next issue for them to grapple with is the mechanical heart. Rosie had to come off the Berlin heart yesterday as they had to stop the anticoagulation meds for theatre and because of the bleed. She is now on a temporary heart bypass machine but this morning that have found some clots forming in the tubes of the new device. The perfusionist and mechanical heart surgeons are currently discussing a plan to deal with this. Rosie is blissfully unaware and continues to be an absolute warrior. Words cannot express how immensely proud of her we are. Love you so much Rosie x
4th Mar 2016
Rosie had a busy night. The bleed in the brain meant that all blood thinning products essential for mechanical hearts were stopped. The Levitronix device that Rosie is on does not need such a high dose of blood thinning products as the Berlin heart, hence the reason for the change. However, Rosie had to have three chamber changes yesterday and overnight. This is a risky procedure which requires her own heart to work on its own for the short period of time while they switch to a new circuit. We are waiting to hear what the plan for today is, the ideal would be to start blood thinning products and have the drain removed from the brain, but the neuro surgeon needs to be happy regarding the brain bleed. We should know more after ward round and the neuro surgeons visit. Four weeks on the Berlin Heart machine to date and we can't thank you enough all for your continued love and support.
Highlight of today will be when George and Grace come up to see their little sister x
5th Mar 2016
After a hectic few days and passing yesterday's milestone of four weeks on the Berlin Heart and in intensive care, Rosie had a good night as her numbers all stayed good. She hasn't needed another chamber change, having had four in 24 hours! The small dose of heparin (one of the blood thinning drugs) seems to have kept the clots in the chamber at bay. This morning just before we arrived, Rosie opened her eyes, raised one arm and moved her toes, all fantastic signs that there is no brain damage from the bleed but only time will tell us that. We haven't seen any doctors yet, ward round is always later at the weekends but we expect the plan to be more of the same, have a stable, restful day, but decrease sedation and hope she starts waking up. Thanks for all your messages of support.
6th Mar 2016
Mother's Day - presents, cards and cuddles from George and Grace this morning, before spending the day with Rosie, who has given Mummy the best Mother's Day by being a star. The doctors are very happy with her numbers and she has continued to show signs of the old Rosie by trying to kick off the covers and pull off her head bandage. We have also had a bit of finger pointing so all positive signs that as the sedation reduces further, Rosie will show us who is boss!
While we have had a lovely day reading Dora, another mum on the ward has very sadly lost her baby today. Thinking of her and all the others without their babies on Mother's Day.
7th Mar 2016
Rosie had an excellent night, all numbers stable. She is still very sleepy but responsive and moving when awake so lots of positive signs. The neurosurgeon is happy for the pressure probe in her head to be removed today. They have to stop her Heparin for this, which will almost certainly mean another circuit change due to blood clot issues. The transplant team are coming to speak to us today because while Rosie is as poorly as she is and there remain neurological concerns, she cannot be on the active transplant list. As much as we want her awake to know that she is ok, we have to accept that it is going to be a slow process. Thank you for the lovely Mother's Day messages, Mummy Day was overwhelmed by the amount of love and support she received.
8th Mar 2016
Rosie continues to make good progress. Pressure probe was removed from her head yesterday. The three hours off of Heparin meant that she needed another mechanical heart circuit change but Rosie tolerated it well. The plan following ward round this morning is to wean sedation and ventilation but very, very slowly. As much as we want to see Rosie awake and talking again, we are clearly going to have to be patient!
9th Mar 2016
Today started with a neurological assessment. The neurosurgeon asked Rosie to wave at him and she shook her head no, which he said was even better! The doctors are happy with her progress. She is still very sleepy but responsive when awake and moving all limbs. The surgeon is coming to consider removing the last two chest drains today. We have a new nasal ventilation tube as Rosie bit into the previous oral one. The plan for today is to continue to wean the sedation and ventilation, whilst trying to keep all other numbers and levels stable re heart rate, blood anti coagulation levels, blood pressure etc. Small steps but all in the right direction.
10th Mar 2016
Whilst it is important to consider and discuss organ donation, it is equally important to give blood. Rosie had a blood transfusion overnight, just one of many she has had during her stay. Thanks to everyone who donates.
Highlights from yesterday, the removal of the last two chest drains, the removal of the head dressing and a hair wash. Rosie has a very impressive scar on her head!
Plan for today, a nice quiet, restful day. The doctors are a little concerned about Rosie's high blood pressure and how sleepy she is. Another CT scan has been discussed. However the neuro surgeon isn't too concerned as she is responding appropriately when awake. So another day of anxiously waiting to see whether Rosie becomes more awake as they continue to wean her sedation, or more sleepy therefore requiring further investigation.
11th Mar 2016
Another busy day ahead for Rosie. The doctors have requested another CT scan. She also needs another circuit change. We are back to having a bandaged head as there is a little ooze from some of her stitches. Blood pressure is a bit high, otherwise all numbers good. Rosie is sleeping and looks nice and comfy.
12th Mar 2016
Yesterdays CT scan showed another small bleed, this time on the right side of Rosie's brain. It is literally just a 'slither' according to the neuro surgeon, as opposed to her previous 'significant' bleed. In a normal person it would be nothing to worry about but in Rosie it shows how susceptible she is to bleeds because of her thinned blood. In addition Rosie has a clot at the top of her circuit, which can cause a stroke if it shoots off into her body. We now have a tricky balance over the next couple of weeks of no more bleeds versus just enough Heparin to avoid circuit changes. That said, Rosie had to have the circuit changed yesterday but tolerated it really well. The highlight of the weekend has been Rosie opening her eyes on hearing George and Grace and squeezing their hands, a special moment for us all X
13th March 2016
A good night for Rosie, lots of rest and another blood transfusion to boost her blood levels. Dr's are talking about the possibility of removing Rosie from the ventilator later today or possibly tomorrow. The clot on the intake tube is still there however not changed and a 2nd clot has formed around the pump. They are going to review again this afternoon. looks more like another circuit change this afternoon and removal from the ventilator tomorrow. Neuro Surgeons have been and are very pleased with progress its funny to watch Rosie wave "Go away!" when they ask her to do anything. A planned procedure in the bay on another child now so Daddy has to leave for a couple of hours. lots of rest planned for today and more weaning off sedation and ventilator. Happy Sunday people x x x
14th Mar 2016
Rosie is catheter free, ventilator free and breathing with just a small amount of oxygen for assistance. She looks great, lovely colour and eyes bright and focussing. We also have a new circuit after another circuit change yesterday. We have now weaned one of the opiate sedatives completely and weaned the other further.
Today feels like a great day, but we have been here twice previously. We have to hope, pray and cross everything that this time there are no breathing complications, no bleeds and no more blips.
Onwards and upwards please Rosie..... x
15th Mar 2016
How nice it is to have nothing to report. Rosie has had a nice quiet, uneventful day, just what the doctor ordered. An ENT specialist is due to come and check Rosie's ears as she has complained of pain, but the Neuro surgeon is very happy and has no concerns. Rosie gave him a high five, wiggled her toes and nodded yes when he asked if she was chilly. Her blood pressure continues to be high and the staff continue to investigate why and try ways to bring it down. Someone from the school came up to meet Rosie and enrol her but she was asleep so they intend to try again tomorrow. They left us a pot of playdough to give Rosie's little fingers something to do instead of scratching at scars, scabs and plasters.
16th Mar 20016
Rosie had her first school lesson today. The teacher read her a story, asked her lots of questions, then played a colour sorting game with cubes and bowls. Rosie was unimpressed and fell asleep towards the end, but it's a start.
Again, it is lovely to report that ward round was rather uneventful. Another day of weaning sedation, tweaking meds and hoping for no drama. The oxygen has been switched off but not removed as Rosie has grown rather attached to the teddy bear plasters on her cheeks, holding it in place and doesn't want the nurse to remove them. Typical Rosie, dictating what and when things get done!
17th Mar 2016
Rosie looks great, she has Rosie cheeks, her eyes are bright and she is a great colour. She is sleepy and incredibly grumpy but looks well. Although clinically stable at the moment, we know only too well how quickly this can change and Rosie is by no means out of the woods yet. The doctors have a daily battle of increasing her Heparin to stop clots forming in what is now our 9th mechanical heart circuit, whilst ensuring the blood isn't thinned too much to cause another bleed. Rosie continues to walk the tightrope but at the moment is displaying excellent circus skills!
18th Mar 2016
This morning we were discussing with the nurses whether Rosie would be able to have some of Grace's chocolate birthday cake and how nice it would be for George and Grace to see her so awake. In typical life in intensive care fashion, Rosie is currently having yet another circuit change after a few fibrins and clots developed in her tubes. Sadly, this means being intubated (back on the ventilator) yet again and sedated, so no chocolate cake for Rosie today.
19th Mar 2016
A shaky day today, Rosie is withdrawing from the sedation so has the shakes. Circuit change went well, she tolerated it well and was extubated (taken off the ventilator very soon after the procedure finished). We are more awake, have had cuddles with Daddy today and even managed to do some colouring in. A nice quiet day planned, then hopefully back on the Berlin heart next week. Happy weekend all and thank you for your love, prayers, support and positive thoughts. We don't always like and comment on posts as there are too many, but we always read them and really appreciate them. Lots of love x
20th Mar 2016
The 1st day of spring on Flamingo Ward started with Daddy reading about spring to Rosie
“The legend of the Easter Bunny is thought to have originated among German Lutherans, where the ‘Easter Hare’ judged whether children had been good or bad in the run-up to Easter”
Rosie and Daddy agreed that Rosie had been a “Superstar” this week and will defiantly be at the top of the Easter Bunnies visit list this year.
A quiet day on Flamingo Ward yesterday. The highlight was lots of cuddles with Mummy and Daddy. The low point was watching Rosie withdraw from some of the medicines. Doctors have indicated the plan is to change back to the Berlin Heart at some point next week just depending on theatre space. Rosie is much more alert and lost her arterial line over night due to excessive waving of her arms. This means we have to manually take blood pressure readings until they decide if she needs another line fitted. Mummy has popped home today to eat some birthday cake with Grace and a few friends and might even have her face and nails painted with the rest of the very excited little ones. Plan for today is more cuddles with Daddy and a few Dora stories.
Enjoy your 1st day of spring people x x x
21st Mar 2016
Rosie and Nannie are hoping for cuddles today but the bay is currently closed for a procedure on another patient so this will depend on how long it is closed for. Rosie continues to progress well and there are discussions about going back on the Berlin heart possibly tomorrow or Wednesday. It will be three weeks on Wednesday since Rosie's brain bleed and we are hopeful that she will soon be able to be considered for transplant again, should a suitable organ become available. On the agenda for today, a review of her throat post extubation, to assess Rosie's ability to swallow, her gag reflex and any potential vocal chord damage. We cannot wait to hear Rosie bossing us about again!
(Rosie and Nannie got their cuddle!)
22nd Mar 2016
Plan for today was CT scan, then off to theatre to change back on to a Berlin heart. However, a CT scan first thing showed two new bleeds in Rosie's brain and also indicated that she has suffered a small stroke along the way. Whilst the bleeds are minor, not causing any pressure on her brain and not requiring intervention in theatre, plans to switch back to a Berlin heart are now back on hold.
Rosie has also had to have a circuit change because of the build up of fibrins in the circuit. So Rosie continues to walk the tightrope between clots and bleeds, and we hope and pray that she keeps her balance!
23rd Mar 2016
Rosie had a good night and is quite awake this morning. Circuit change yesterday went well so plan for today is to have a quiet, stable day, try to delay another circuit change for as long as possible, while keeping heparin low to help manage the bleeds. If there are no neurological concerns over the next week, another CT scan will be done then. For now, we sit tight and read lots of Dora the Explorer!
24th Mar 2016
What a busy day we had yesterday. Physio sat Rosie up in a chair for the first time in seven weeks, she had an echo, an ultrasound scan of her vocal chords, Berlin heart dressing change and an EEG. The EEG required Rosie to have probes glued to her head and was left on overnight, secured in place with a rather fetching Easter bonnet netted hat thing! Rosie really struggled overnight with withdrawal, shaking and hallucinating. Another difficult balance, giving enough sedation to keep her calm, but not too much so we can assess neurologically. Plan for today is to have a quiet, calm, stable day and Grandad is hoping for cuddles later.
24th Mar 2016
Rosie has just gone down to theatre. She was agitated and complaining of pain in her head this morning so had another CT scan. It showed that the bleed on the right side had got worse, requiring surgery. Now we have to once again wait and hope and pray that Rosie can get through this latest hurdle.
24th Mar 2016
Rosie is back from theatre. The operation went as well as the surgeons hoped. Now we wean the sedation, wait and assess neurologically before deciding on next steps. Thank you all for your messages and prayers. Rosie is the bravest, most amazingly strong little girl in the world and continues to fight on. Go Rosie!
25th Mar 2016
Rosie has had a good night. She has slept well but squeezed the nurse's hand and responded appropriately when spoken to, shaking her head. The circuit looks ok considering we are heparin free. The doctors are really happy with Rosie. Plan for today, wean sedation a bit and possibly a circuit change later but at the moment it looks better than anyone expected it to given Rosie has been heparin free since 1pm yesterday. George and Grace coming up later to view the new head bandage before they head off for Easter fun. Fingers, toes and everything crossed for a 'Good Friday'!
26th Mar 2016
Mummy, Daddy, George and Grace got to enjoy some sunshine and watch the street entertainers in Leicester Square yesterday, bought their body weight in M&Ms and had a nice meal in TGI Fridays, while Nannie and Grandad stayed with Rosie.
The plan for today had been a circuit change and another CT scan. However, the doctors are very happy with the circuit and now thinking it won't need changing today. Even more pleasing is that we have been Heparin free for just over 48 hours and the doctors are happy to keep it off for now. The longer we can go without, the better. The Neurosurgeon is also happy that Rosie opens her eyes to her name and follows with her eyes so doesn't feel a CT scan is required. Instead we are going to have a nice quiet, relaxing day, having just had a wash and put a lovely new blanket on the bed.
27th Mar 2016
Morning and a Happy Easter to all. Rosie had an early start this morning having a circuit change first thing. Mummy and Daddy called and were here to see her looking bright eyed and bushy tailed before they gave her a shed load of sedation to intubate her and change the circuit. Next is a CT scan to give us a base reading post operation. They are then looking to start a small dose of Heparin (Blood Thinning Drug). Oxygen support will be reduced to we can remove the ventilator.
In addition to lots of easter treats today, Rosie will hopefully be getting a new baby cousin, so Easter Bunny and Stork deliveries expected today.
27th Mar 2016
A very busy Easter Sunday for Rosie
28th Mar 2016
Easter Sunday was a great day. It started with a visit from the Easter Bunny (the amazing GOSH staff) and a circuit change, which Rosie tolerated really well. She then had a CT scan, which the Neurosurgeon confirmed he was happy with. When not sleeping, Rosie was quite alert, shaking her head no and pointing with her finger. By the afternoon the new circuit had already started to collect fibrins so a low dose of Heparin was started. Overnight, the circuit has been good, the Heparin worked initially, but now there are lots of fibrin strands building again. The debate this morning is whether to increase Heparin, change the circuit again or both. Whilst we know we have to increase the Heparin, we are obviously very anxious about doing so. We hope the doctors approach is to go slowly, very slowly indeed and pray for no more bleeds or complications. The most exciting news is the arrival of Rosie's new cousin. She now has a new little man to play with. No name yet but Rosie thought he should be called Freddo so not sure why they can't just choose that. He looks gorgeous, huge congratulations Antony and Katie and welcome to the world Baby Freddo!
29th Mar 2016
I never thought a smile could mean so much! Rosie smiled at mummy today, the best thing mummy has seen in almost eight weeks.
There have been lots of discussions today, including about introducing a steroid which may improve clotting, about increasing Heparin and at what rate and about circuit changes. Rosie has also had a neuro assessment and all signs are positive.
A circuit change is happening as we speak. Not sure whether this is number 11 or 12, what we do know is that we have had a few!
30th Mar 2016
Circuit change last night all went to plan. Many people have asked what a circuit change is. Rosie is connected to a mechanical heart machine via two tubes into her tummy, which are connected to her heart. They pump blood into and out of her heart via the machine. Rosie's blood when it hits the plastic in the tubes can start to clot so she needs blood thinning drugs (Heparin) to stop this from happening. Clots can cause Rosie to have a stroke, hence they change the tubes before any of the clots shoot up into her body to prevent this. Each time she has a circuit change, Rosie has to be sedated and intubated. Her heart also has to cope on its own while the surgeons replace the tubes so it is a risky procedure.
The Heparin to thin the blood for the circuit, is also what cause the bleeds in the brain if the blood is thinned too much so it is a delicate balance.
Rosie is looking good. She is very sleepy, but alert and responsive when awake. The music teacher came and sang some songs for Rosie this morning but she wasn't impressed enough to join in by banging a drum or shaking some bells, maybe next time.
We are now hoping and praying for no more bleeds and a stable circuit so no more circuit changes. A big ask but necessary to allow Rosie to wait for a heart transplant.
31st Mar 2016
We really, really need a stable, uneventful day. Rosie didn't have a great day yesterday, was complaining of tummy ache, which progressed to headache. She became so agitated that we ended up having another CT scan late last night. Thankfully it showed no new bleeds, phew!
There is a big meeting today where all teams, across all disciplines will discuss Rosie. Fingers crossed they come up with a plan to get Rosie stable and NO MORE BLEEDS!
1st April 2016
1st of April - is the start of our 3rd calendar month in CICU @ GOSH
Rosie slept well last night and is currently sound asleep on mummy's lap, having lovely cuddles in the chair. She is complaining of tummy pain so an X-ray has been ordered. Heparin has increased very slightly so we will wait and see what effect it has. Rosie is now tolerating full feeds again via her NG tube and all numbers look good. We are looking forward to seeing Daddy, George and Grace later.
2nd April 2016
Yesterdays tummy X-ray showed no problems so todays is just a planned rest day. Dr's believe it might have just been a reaction to switching some of the drugs from intravenous to Oral. Daddy George and Grace are up for the weekend so Daddy gets to spend the day with Rosie while Mummy keeps George and Grace busy. This morning Rosie managed her first "Laugh" when Grace said there was Poo Poo on the sheet after a huge explosion. Rosie was out of the bed having Daddy cuddles while the sheets were being changed. Mummy, George and Grace are now off to The Royal Opera house courtesy of GOSH for a day of Activities followed by a exclusive back stage tour then a performance of Giselle by the Royal Ballet. (I think Grace will enjoy this more than George) This means more cuddles with Daddy, lots of rest and lots of Dora the explorer stories for Rosie and Daddy.
Finally good luck to all the people taking part in the "Crazy Fitness Event" at the Warren Golf and Country Club today - Raising money for a great cause.
Happy Saturday people x x x
3rd April 2016
Mummy, George and Grace had a lovely time at the ballet yesterday and are very grateful to GOSH for providing them with such amazing opportunities. Mummy enjoyed it more than George and Grace, George said 'it was good but I did nearly fall asleep at one point'! They enjoyed the hustle and bustle of Covent Garden, the street entertainers and the quality time with mummy much more.
Rosie had a good night and is bright and alert today, despite being awake since 4am. We have had some girlie pamper time, mummy painted her nails (thanks to Lauren for the pink sparkly varnish). Whilst the circuit looks great, there is a rather ominous clot forming in the arterial canula, (the bit which goes into Rosie's stomach), so we need to wait and see whether anything needs to be done. We were optimistically hoping to get to Tuesday and have managed to keep the same circuit for a whole week, we shall see.........
4th April 2016
A rollercoaster of a day ahead. The fibrin and clot from yesterday is in the canula connected to Rosie's tummy and not the actual circuit. Surgeons have been consulted and don't feel that there is anything they can do so the best course of action is to increase the Heparin (the blood thinning drug) in the hope it disperses the fibrin/clot. The doctors have therefore increased their target range for thinning Rosie's blood. Whilst this appears to be working in dispersing the clot, it also means that she is now back within the range where she had the bleed on her brain previously. So now we face an anxious wait and have to hope and pray that the same thing doesn't happen again.
5th April 2016
We have had so much amazing support, Rosie is clearly loved by many. Lots of people tell us that the first thing they do each morning is check Rosie's website or Facebook for an update. We have been a little slack lately in posting updates. Rosie has been keeping Mummy busy with dressing changes, reading stories, liaising with doctors/nurses and helping with physio and cares. After the dramas of the past couple of weeks, Mummy is enjoying every precious moment with Rosie.
The highlights of today are that grandad finally got to have his cuddle and Rosie got to have an ice lolly, when speech and language came to test Rosie's swallow.
The circuit looks great and is a week old today, the longest we have lasted without needing a change, so a very positive step forward. The Heparin has increased but everything seems fine neurologically and regarding bleeds to date. We are keeping everything crossed that this continues to be the case.
The plan for this week is to have a quiet, stable week with no dramas, which may mean we move to updating as and when we have news as opposed to daily updates so please don't be alarmed if there is no update, no news is good news.
9th April 2016
After a couple of days with no updates we are together as a family again. George Grace and Mummy are off out for some fun whilst Daddy gets some quality Rosie time.
The past couple of days have seen smiles from Rosie and a belly laugh while on Daddys lap over her exploding bottom! It is the most amazing thing to see her smiling again and looking more like her old self.
Thankfully Rosie has had a couple of stable, non eventful days, just what the doctor ordered. Please god it continues until she receives her gift.
A huge thank you to Ste Kane and friends currently tackling The Born Survivor challenge for Rosie.
12th April 2016
Rosie and I have been living at GOSH for 10 weeks now. In that time, Rosie has had three major surgeries in theatre, a number of surgical procedures (where theatre teams and equipment has come to her), including 12 circuit changes, has been intubated and sedated more times than I can remember and faced many tough challenges. Rosie has amazed us with her strength, courage and fighting spirit.
This weekend we have seen glimpses of Rosie's personality. Whilst she is still not speaking, we have had lots of smiles and silent giggles, a delight for us and all the staff here to see.
During our stay we have met some amazing people. The nurses are heroes. Rosie has been so lucky to have so many fantastic nurses looking after her. I hate leaving her each night but knowing that she has nurses who not only are experts in their field but equally great at soothing Rosie and reading Dora the Explorer stories is such a comfort. The Fellows, Doctors, Consultants, Physios, Play workers and specialist staff are all fabulous. We feel so lucky to have such an amazing team looking after Rosie.
The highlight today was that Rosie has been given her own fridge as she is now able to start trying some yoghurt and juice. Yesterday Rosie managed some ice cream, again an absolute delight to watch her enjoy eating again.
Life in intensive care is tough. It is an absolute emotional rollercoaster but for all the lows, there are many highs. Today we just feel blessed to be enjoying seeing Rosie smile, long may it continue.
18th April 2016
The number thirteen, unlucky for some! For another little boy at GOSH it was his lucky number, having waited thirteen months for a new heart.
For Rosie, circuit change number thirteen this weekend was not such a lucky number. Due to a clot in the canula connected to her stomach, and lots of fibrin in the circuit, Rosie required a circuit change. The surgeons took longer than on previous occasions for a number of reasons, the position of the clot and the fact that there is so little left to cut and clamp as Rosie has had so many circuit changes now.
Rosie didn't cope very well and needed a shock from a defib to force her heart back into a normal rhythm. This also meant that the doctors wanted to keep her intubated (on the ventilator) and sedated for longer after the procedure to ensure Rosie was ok. Thankfully, she bounced back in her usual feisty way, jabbing insistently at the 'I am hungry' picture on her communication board while she still had the ventilator tube down her throat!
Friday we were told we have now spent over 1000 hours on a VAD device
The week leading up to circuit change had been our best yet. We spent the week thoroughly enjoying seeing Rosie eat, although only ice cream, yoghurts and purée foods allowed due to Rosie's delayed and weak swallow. We also saw lots of smiles and giggles.
We are hoping and praying that we can enjoy more of the same this week and for as long as it takes for Rosie to get her new heart.
25th April 2016 - Week 12 update
A summary of the weekend - emotional. The weekend started with another big meeting to debate whether Rosie should convert back to a Berlin Heart. This would mean that she could leave intensive care but the risk of another bleed remains high. We were relieved to hear that Rosie is to stay on her current device in intensive care at present. The hope is that a donor can be found while she is stable and we have grown used to life in intensive care so are happy to stay. Keeping Rosie stable and safe is the priority over quality of life for us.
The steroids are making Rosie very bloated and she is ravenous, but it is great for us to see her eating. There are issues with her sodium levels and we continue to grapple with anti coagulation but these are minor issues compared to some of the big battles we have faced over the past three months. Rosie now has a new chair from the physio team which we are getting used to spending 20 mins twice per day in.
Saturday saw a very brave and slightly crazy 15 year old, Megan Jones do a bungee jump from a crane at the O2 to raise money for GOSH. Daddy, George and Grace went to watch, Mummy and Rosie watched the recording from our intensive care bay. It was also nice to see Megan and her Mum Jo for a quick visit on Sunday.
Sunday also saw three amazing women run the London Marathon for Rosie. Mummy went to watch and tears were shed. Seeing people being carried over the finish line by other runners or stewards and hugging my amazing friends at the end, it was definitely emotional.
We cannot thank people enough for their support. Whether participating in fundraising events, sending gifts to Rosie, raising awareness of organ donation or simply sending us messages of support, we really appreciate them all and feel very lucky to have such amazing family and friends.
4th May 2016 - Week 14 update
Rosie has had a fantastic few days. Ward rounds have lasted a couple of minutes instead of twenty, always a good sign when there is little for the doctors to discuss. Everyone is very happy with Rosie and how she is doing.
She is no longer on any sedation, only as required. Her sodium was worryingly low, but has risen back up to a good level over the past couple of days. Rosie's blood pressure is stable and numbers all look good. The steroid continues to keep Rosie's circuit looking ok, lots of fibrin but no clots and her Heparin and clotting levels have been fairly stable.
Rosie is eating and drinking almost completely normally now and has more strength and energy. We have managed a lap of the ward in a special customised chair most days and Rosie has started to join in with school and activities, attempting to hold pens, play dough or animals etc.
I have spent the past few days telling people that Rosie is great, looking great and the best she has been for some time. We certainly do have a lot to be thankful for. She has faced so many tough challenges and has come out fighting. However, as I sit here looking at photos of Rosie taken over the past four months, I cannot help but get upset. I have photos of her painting and playing happily pre Berlin heart op. I then have photos post op, chest open, on the ventilator. Then there are the ones post brain bleed, with a head bandage to add to her war wounds. In the latest photos, Rosie is smiling and 'looking good' but she has huge hamster cheeks from the steroids, is so weak that she cries when I lift her, has absolutely no strength in her arms and legs, and isn't talking at all, which is possibly psychological, possibly from the stroke or brain damage from the bleed.
Whilst is it wonderful to be enjoying Rosie being stable, alert and more interested in things again, it is equally hard recounting everything that she has had to endure since her Restrictive Cardiomyopathy diagnosis, and in particular since her Berlin heart operation. If a donor had been found for Rosie before the beginning of February, she would not have faced any of her recent battles. Rosie continues to battle on and with a smile on her face, so we do the same and continue to hope and pray that she gets a transplant soon. Please continue to pray for Rosie and help raise awareness of organ donation
100 Days at GOSH
Rosie has been a resident at GOSH for 100 days now. We have had quite a few ups and downs in that time and this continues to be the case.
Rosie had circuit change number fourteen on Friday evening and silicon extensions were fitted to her canulas as there is no longer any tube left to clamp and cut. Thankfully unlike the last change where Rosie required adrenaline and the defib, she tolerated this change well.
We continue to battle with Rosie's clotting, despite her being on a steroid, which is helping. Just last night her clotting went from in range at .43 to over range at .64, with an APTT of 122! This won't mean anything to most of you, to us it means she is at risk of another bleed. So we wait anxiously, keep our eyes peeled for signs of a bleed and hope and pray that this doesn't happen.
While mummy is nervous, Rosie is smiling and oblivious to our concerns. She is awake and alert, enjoying school, where the teacher comes and reads stories and plays games. The plan is for Rosie to spend more time in her chair, getting used to being handled again, which she currently hates, and using muscles that have been sleeping for the past three months. Ultimately, the aim is to keep her stable, whilst getting her as strong as possible in preparation for transplant.
The cardiac arrest alarm continues to go off, thankfully not as frequently recently. Mummy has made friends with other cardiac patient mummies. We give progress reports and share our daily concerns over a cuppa in the parent kitchen, and have done the same over a glass of wine at the end of the day too. Husbands back at home and back to work, mums helping each other through, it is a fantastic support.
Equally the staff, particularly the nurses and volunteers continue to be amazing. We have grown very close to some of them now, as have they to Rosie. Even the doctors get smiles and waves at ward round - if they are very lucky.
So life at GOSH continues for us. We continue to pray that Rosie's second chance will come soon, that the call to say a donor has been found comes. In the meantime, we continue to make the most of every day. You only get one life, live it to the full, then consider donating your organs so others can do the same.
20th May 2016 - Week 16 update
We have been reminded again over the past few days of how precarious life on intensive care is. Rosie had a circuit change on Monday, number 15 now. Thankfully she tolerated it well. Rosie struggled when extubated after and was sick a number of times. The next day she wasn't herself but she never is post circuit change, it always takes a couple of days for her to bounce back.
However, by Wednesday, instead of bouncing back, Rosie was getting worse. There were lots of theories about her having an upset tummy or her heart failure meds not working but as the day wore on it became clear that something really wasn't right.
Samples were taken and sent to the lab. Sadly two came back incredibly quickly having tested positive for an infection in Rosie's blood. Antibiotics were started immediately.
Rosie has had a good night, with the help of sedation and is still fast asleep. Her clotting is being discussed with Haematology this morning as the infection means that the Heparin (blood thinning drug she needs for the mechanical heart) isn't working. Her CRP, (her infection markers) have increased from 72 on Wednesday, to 170 yesterday and 263 today so not great. Hopefully that will start to come down as the antibiotics kick in.
Rosie continues to smile and fight, despite feeling really rather rubbish. Yet again she needs your positive thoughts and prayers to get through this latest set back.
21st May 2016
Rosie has had a good night. Woke at 9am. Her CRP (Infection Markers) have come down to 159, still very high but better than the previous high of +260. She hasn't had a temperature overnight. They have sent more cultures this morning, she has woken up brighter wanting pasta for breakfast! Her clotting is starting to creep back up into range, another good sign that she is fighting the infection and the Heparin is starting to work again. Her circuit looks ok. Fingers crossed for a good day. We have moved into bed space 14 in the next bay for the weekend due to another sick baby needing ECMO cover. This bay has a great view of the roof space where the DIY SOS big build roof garden will be. George very happy watching the Crane lift pallets into the area as they prepare for the build. Thank you for all your messages of support after yesterday update.
2nd June - 2016 - 4 Months in GOSH
2nd of June - means we have now been at GOSH for 4 months
Lots has happened since our last update, it is fair to say that the rollercoaster continues.
Rosie had circuit change number 16 on Monday 23rd May. She tolerated it really well. Her CRP (Infection Marker) came down to 20 and we had a few great days with Rosie being on great form, making lots of sounds and giving us lots of smiles.
Rosie had a CT scan, which all looked good so Aspirin was started last Monday, with a view to working back up to converting Rosie on to a Berlin heart.
Rosie hasn't been great over the last couple of days and we started questioning whether there was another infection brewing. Cultures (samples) were sent but no positive result has returned so far.
The plan was to convert Rosie back on to a Berlin heart yesterday. However, Rosie's CRP came back at 174 and it was obvious that there was an infection so this plan was scrapped and antibiotics started. In addition lots of tests were carried out yesterday to try to find the cause of the infection, including an echo, blood samples taken and ultrasound scans of her tummy, hips and legs.
This morning Rosie has had a circuit change (number 17 now), which she tolerated well. She is intubated again and is currently having another CT scan as a precaution.
Thanks for your continued support x x x
4th June 2106
Thursdays CT scan confirmed that Rosie has had a stroke. She has no movement on her right side. Thankfully her swallow doesn't appear to be affected so she can still eat and drink. Equally neuro wise Rosie is still alert and there doesn't appear to be any loss of comprehension/understanding. We have been told that it is impossible to know the full extent of the damage from the stroke, and how much of it is reversible. The neuro surgeon said that only time will tell but Rosie is young enough that she should recover well. Another blip along Rosie's transplant journey.
12th June 2016
Yet again it has been an eventful week and there is lots to update on. Following confirmation of the stroke, Rosie had a great weekend and Monday last week. She was alert, smiling, eating and seemed completely fine, apart from the fact that she wasn't really moving her right arm and leg.
On Monday morning, following a positive ward round, the Day family (sadly minus Rosie), left for Legoland and Nannie Rita was left to look after Rosie. At midnight on Monday night/Tuesday morning, Nannie phoned to say that the hospital had phoned saying they were concerned about Rosie. She had woken in agony and they were concerned about her left side so preparing for another CT scan. Mummy drove from Legoland and got to the hospital as Rosie returned from CT.
A circuit changed followed at 3am, number 19, which Rosie tolerated well. Nannie and Mummy left the hospital at 4.45am for a couple of hours sleep before returning first thing for ward round/results of the CT. Thankfully, the CT showed no evidence of a new stroke or bleed. However, it was very clear that neurologically Rosie wasn't great. She was very sleepy and when awake not responsive. Her eyes were glazed and permanently looking over to the right, she wasn't shaking or nodding her head in response to questions and her left arm was very shaky. The Neuro team fitted an EEG to monitor her brain activity over a 24 hour period. The new theory was that Rosie was having seizures. 24 hours later and thankfully there was no evidence of seizure activity from the EEG. However, it did show that Rosie's brain activity was much slower than that of a typical three year old. Rosie was having some really horrible spasms and it was very hard to see her in so much pain.
The conclusion was that there was swelling in her brain from her brain injuries, which was causing her neurological symptoms. The hope was that she would improve as the swelling subsided.
Rosie has slept lots this past week. Each time she wakes, she seems a little brighter so things are moving in the right direction. They are, however, moving slowly. Rosie has been given medication to help with the nerve/spasm pains, which is definitely helping. We have had some smiles and the odd shake of the head 'no'. She is also now focusing more and generally more alert.
Circuit number 19 lasted until Saturday, when a large clot appeared and it was decided that circuit change number 20 was required. Rosie yet again tolerated it well and was extubated shortly after the procedure.
We are hoping for a good week and for our absolutely amazing, brave, strong and beautiful Rosie to continue to improve, making small steps in the right direction. Rosie is now on circuit number 20
18th June 2016
Following our last update, Rosie is now on circuit number 21 and this latest change was conversion back to a Berlin Heart.
There was a Multi Discipline Team meeting last Tuesday afternoon to discuss this and it was decided that Rosie should convert and the surgeon was contacted to see when he had a theatre slot available. The surgeon came back to say 'tonight' so Rosie went down to theatre at 10.30pm on Tuesday. Pleased to say that all went smoothly.
Rosie has had an OK week. She has slept lots but she is really struggling with cramps/spasms from the stroke and swelling in her brain. It is very hard for us to see her in so much pain. The neuropathic medication has been increased and is helping, the Berlin Heart is working well, all numbers are good and Rosie's anti coagulation is currently stable and within range - long may it continue.
We are hoping that this is the turning point and Rosie will be back playing in the Bear playroom before we know it.
25th June 2016
Delighted to report that Rosie has had a good week!
Her Berlin Heart is working well and her anti coagulation has been stable. Rosie is still getting frequent cramps, particularly in her right arm and leg, but medication is helping and they are less painful now. She has also been visited a number of times by an amazing nurse who does massage, which has really helped.
Rosie is alert, bright eyed and smiling lots. She still isn't responding to questions by nodding/shaking her head or pointing with her hands but we are hopeful that this will come as she continues to improve.
Although Rosie isn't eating as her swallow has been affected, she is being fed via her NG tube and gaining weight. She certainly looks much bigger and stronger than she did when she came into hospital, almost five months ago.
The next step is to start Warfarin. Rosie had a platelet function test yesterday, which showed that the anti coagulation medication she is taking is suppressing her platelet function. Therefore, the next step is to start Warfarin, whilst reducing Heparin. Once Rosie is stable on Warfarin and off Heparin, she can move to Bear ward and the risk of bleeds, whilst still there, do significantly reduce. This feels like the last big hurdle for Rosie to jump.
As Rosie is no longer in the ECMO bay and no longer requires ECMO nurses, we have lots of Berlin Heart trained nurses looking after her now. They are all lovely and love Rosie, but equally we absolutely love it when one of our old favourites is able to look after her, particularly through the night. Rosie has made lots of friends during her time on Flamingo and now has even more nurses fighting to look after her than she did previously. She is a very loved little girl.
28th June 2016
Feeling the breeze on our skin, smelling flowers and tickling our noses with them, listening for and watching aeroplanes fly past, feeling the sun on our skin and having to squint to see the London skyline...
Rosie, Nannie, Auntie Teresa and I experienced all of these yesterday thanks to one of the Transplant Consultant Cardiologists who took Rosie to the GOSH roof top garden.
It was Rosie's first time out in the fresh air for five months and first visit to the garden, so felt like a momentous day. Rosie's eyes were bright as she surveyed her new surroundings. She was in awe of everything from the lights in the lift to the aeroplane that will be bringing Uncle Tony, Katie and baby Oliver home soon.
We are hoping for many more excursions thanks to the Berlin Heart and the amazing team at GOSH who push boundaries regarding what is possible for children waiting for transplant.
A Special Update
Corinthians 4:6 : For God, who said, "let light shine out of darkness"
The phone rang. Our lives were about to change forever. Rosie's life was about to be saved. After months of waiting, and many difficult battles, it all happened incredibly quickly.
Rosie was taken to theatre, nine hours later, our little girl came back to us, with the heart of an angel, the heart of a hero.
In their darkest moment, an incredible, brave, selfless and courageous family thought of others and gave Rosie the most amazing gift, the gift of life.
We are so very sorry for your loss. We can never thank you enough for giving Rosie a second chance. We promise to make the most of every single moment of her precious life. We will always remember Rosie's donor, they will live on through her.
We will be forever thankful to the amazing team at GOSH, to organ donation and to Rosie's angel and their family.
12th July 2016
Delighted to say that Rosie has been an absolute superstar both during her transplant operation and since. The surgeon said it was 'the perfect transplant surgery', everything went totally according to plan.
Post surgery, Rosie is making an excellent recovery and so far everything is moving in the right direction. She still has a very long way to go, not just in terms of recovering from the heart transplant operation, but also with rehabilitation following the neurological complications Rosie encountered waiting for transplant.
The next big step is a cardiac biopsy performed under general anesthetic. Rosie will require three of these in the first year post transplant to test for rejection of the transplanted heart. Providing all goes well, we can begin to think about transferring up to Bear Ward and start to prepare to bring Rosie home.
We were incredibly touched by the many many lovely messages we received and thank you all for your continued love and support. We continue to be eternally grateful to Rosie's amazing donor and their equally amazing family for giving Rosie such a precious gift.
Next entry here