Yesterday we all felt very down. Niamh spent most of the day asleep. She woke up properly around 4.30pm in time to go for a swim which she thoroughly enjoyed. She stayed awake till about 8pm but it was an effort.
We knew that a few things may explain her sleepiness:
1) she had some nozinan on Monday night as she was a little agitated in her sleep. Nozinan is a type of tranquiliser. She only had 1/2 the amount she was given in A&E 10 days ago but it may have made her more sleepy.
2) it is common for children who have had radiotherapy to have a sleepy phase 6 weeks to 3 months after the end of their radiotherapy treatment. Niamh is right in that period.
3) the tumour. As the tumour grows larger, Niamh is expected to be more and more drowsy, sleep more and one day not wake up.
We feared the worst yesterday. When she woke us up at 6am, we both felt relieved that we were given more time. She went on to have a great morning. She watched a bit of TV in bed with Emilie and us (a bit of a squeeze), played with various wooden toys that have become her favorites in the playroom. We even took the girls for a walk to Cadbury World and spend some time in their free playground. By the time we got back Niamh still had some energy for a bit of coloring. She fell asleep around noon, her usual nap time since we've been here.
We are all feeling a little more positive. We know the end is near but we are just not ready. Will we ever?
Wednesday, 31 August 2011
Sunday, 28 August 2011
Bit More Sleepy
We've had some more lovely days at acorns. We've been in the spa everyday before bedtime and Niamh has really enjoyed her shower afterwards when she plays with the water.
Niamh seems more settled as pain control and constipation seem more in balance now that she has been taking Movicol.
She is getting a little bit more sleepy during the day and is taking a nap for 2-3 hours in the day. This could be the period of somnolence associated with Radiotherapy normally 6 - 12 weeks after treatment.
Niamh likes playing repetitive games at the moment. games with beads or moving things from one bowl or box to another. She has become quite compulsive with these games. She particularly likes moving daddy's breakfast cereal from one bowl to another, including milky weetabix!
On the whole Niamh seems happy with her routine, is settled and sleeping well.
Niamh seems more settled as pain control and constipation seem more in balance now that she has been taking Movicol.
She is getting a little bit more sleepy during the day and is taking a nap for 2-3 hours in the day. This could be the period of somnolence associated with Radiotherapy normally 6 - 12 weeks after treatment.
Niamh likes playing repetitive games at the moment. games with beads or moving things from one bowl or box to another. She has become quite compulsive with these games. She particularly likes moving daddy's breakfast cereal from one bowl to another, including milky weetabix!
On the whole Niamh seems happy with her routine, is settled and sleeping well.
Thursday, 25 August 2011
Stable
A busy day today with many visitors. Niamh is stable, possibly a little more tired today than yesterday.
Thank you for all your kind messages.
Thank you for all your kind messages.
Wednesday, 24 August 2011
Improvement
Niamh is continuing to be better every day.
Today the girls enjoyed a pantomime this morning, 'Aladdin'. Niamh fell asleep 3/4 of the way through but really enjoyed what she saw. She fell asleep so peacefully despite all the noise, I was a little surprised. She has done a lot of walking inside and outside in the garden. Last week she could hardly stand on her legs. She is a lot more interactive and has been very interested in playing and being kept occupied. We had our daily spa before bedtime. Once again she loved it.
It is so nice to read books with her once again and to see her smile. She is still not the child she was two weeks ago but she has definitely improved a lot from last week and the weekend. We really wish we could freeze time now.
Today the girls enjoyed a pantomime this morning, 'Aladdin'. Niamh fell asleep 3/4 of the way through but really enjoyed what she saw. She fell asleep so peacefully despite all the noise, I was a little surprised. She has done a lot of walking inside and outside in the garden. Last week she could hardly stand on her legs. She is a lot more interactive and has been very interested in playing and being kept occupied. We had our daily spa before bedtime. Once again she loved it.
It is so nice to read books with her once again and to see her smile. She is still not the child she was two weeks ago but she has definitely improved a lot from last week and the weekend. We really wish we could freeze time now.
Tuesday, 23 August 2011
A few pictures from the weekend
Another nice day, not much to report. Niamh and Emilie have enjoyed seeing a couple of friends from nursery this morning (Niamh's boyfriend being one of them) and another one this afternoon. Emilie has also been busy with Julie, a volunteer at Acorns, doing some Art and Craft. We were not able to go in the pool today as there was no lifeguard but we were able to use the spa. It was lovely, a big family bath. Niamh was very calm and peaceful. They are both asleep now, looking forward to a pantomine in the morning.
Here are a few pictures taken at the weekend.
Here are a few pictures taken at the weekend.
Monday, 22 August 2011
Acorns Hospice
After a very difficult week, the last three days have been a little kinder to us all.
Wednesday, Niamh struggled a lot with headaches, itchiness, feeling uncomfortable. She fell asleep around 10.30pm but woke up a couple of hours later. She spent the whole night in our bed sitting up, refusing to lie down, moving her arms uncontrollably and unable to rest. It was a tough night. In the morning Alex took her to A&E. We wanted to know whether the neurosurgeons were planning anymore regarding her shunts and if not if we could increase her dose of painkillers. The neurosurgeons said that they didn't want to do anything as it was too early, but to keep her very hydrated. The oncologist consultant decided to replace the oral morphine she was on about 8 times a day with MST, a slow release morphine which is given every 12 hours. They said we could give Niamh more piriton (anti-icthing medicine) throughout the day, from every 8 hours, we could now give it every 4 hours.
By midnight on Thursday she was still awake refusing to lie down and moving her arms uncontrollably. Alex took her to A&E then, Emilie and I followed a couple of hours later. The doctors were very concerned about her. Were her symptoms due to the tumour progression or could they partly be side effects from the morphine and piriton? On top of everything, her heart rate was very low. They decided to give her some buccal midazolam, an anti convulsant drug. She fell asleep within minutes. It was amazing to see her calm and peaceful and be able to kiss her cheeks once again. She slept for about 5 hours. By the time she woke up around 9am, she was a little calmer than the day before. Yet within a couple of hours, the uncontrollable arm movements were back. The doctors then decided to put her on nozinan, a type of tranquilizer. She had a dose at 1.30pm on Friday afternoon. Within an hour, she fell asleep and remained asleep till the next day at 6.30am. Before leaving the Children's Hospital around 4pm on Friday, we had the opportunity to chat with the oncologist Consultant. We expressed how difficult we had found the last few days not being able to control Niamh's pain. They said that they had struggled as her symptoms seemed to get worse so quickly. He explained to us that the end of Niamh's battle may be sooner rather than later.
On Friday afternoon we moved into Acorns Hospice, the best decision we have ever made. It is a beautiful place, with a lot of very kind people. They have given us a family flat upstairs, as well as two adjacent bedrooms downstairs. Niamh's bed was made with Peppa Pig duvet covers and she has a Peppa Pig poster with her name on, above the bed. The last three days have been incredible. Niamh has been gradually getting better. We had a few smiles today (we had no smiles at all last week). She is still struggling with the itchiness and uncontrollable arm movements but she is managing a lot better. She hasn't needed any tranquilisers since Friday. She falls asleep on her own. We all sleep together as a family. The nurses (who are dressed in normal clothes) have taken over the medicines so we can all sleep at night. Our days are all about spending time with the girls. We have made use of their hydrotherapy pool every day since we have been here. When we go in we have the pool to ourselves, they put some nice relaxing music, lights off, and Niamh loves it. She is so calm and relaxed it is wonderful. When her lines came out a couple of weeks ago, both Niamh and Emilie were happy that they would be able to go swimming together again. On Friday we didn't think we would get the opportunity. Now we have been THREE times and if all is well we will continue to go every day. Acorns also has a multisensory room which is good fun and the most amazing garden. We have been able to take the girls out a lot.
So last week was horrible, these last few days have been a little nicer. Niamh is unfortunately not the child she was two weeks ago, she has lost a lot of her brightness and sparkle. Yet she is amazing us all once again by her sheer determination. The last few days have been so special. We are grateful for every minute, hour, day we get to spend together as a family. Emilie is doing well, she says we are on holiday in Acorns. She has everything she needs here, even a 'making room'. Most of the staff already know that she wants to be an artist when she grows up.
http://www.acorns.org.uk/our-hospices/acorns-in-birmingham
Wednesday, Niamh struggled a lot with headaches, itchiness, feeling uncomfortable. She fell asleep around 10.30pm but woke up a couple of hours later. She spent the whole night in our bed sitting up, refusing to lie down, moving her arms uncontrollably and unable to rest. It was a tough night. In the morning Alex took her to A&E. We wanted to know whether the neurosurgeons were planning anymore regarding her shunts and if not if we could increase her dose of painkillers. The neurosurgeons said that they didn't want to do anything as it was too early, but to keep her very hydrated. The oncologist consultant decided to replace the oral morphine she was on about 8 times a day with MST, a slow release morphine which is given every 12 hours. They said we could give Niamh more piriton (anti-icthing medicine) throughout the day, from every 8 hours, we could now give it every 4 hours.
By midnight on Thursday she was still awake refusing to lie down and moving her arms uncontrollably. Alex took her to A&E then, Emilie and I followed a couple of hours later. The doctors were very concerned about her. Were her symptoms due to the tumour progression or could they partly be side effects from the morphine and piriton? On top of everything, her heart rate was very low. They decided to give her some buccal midazolam, an anti convulsant drug. She fell asleep within minutes. It was amazing to see her calm and peaceful and be able to kiss her cheeks once again. She slept for about 5 hours. By the time she woke up around 9am, she was a little calmer than the day before. Yet within a couple of hours, the uncontrollable arm movements were back. The doctors then decided to put her on nozinan, a type of tranquilizer. She had a dose at 1.30pm on Friday afternoon. Within an hour, she fell asleep and remained asleep till the next day at 6.30am. Before leaving the Children's Hospital around 4pm on Friday, we had the opportunity to chat with the oncologist Consultant. We expressed how difficult we had found the last few days not being able to control Niamh's pain. They said that they had struggled as her symptoms seemed to get worse so quickly. He explained to us that the end of Niamh's battle may be sooner rather than later.
On Friday afternoon we moved into Acorns Hospice, the best decision we have ever made. It is a beautiful place, with a lot of very kind people. They have given us a family flat upstairs, as well as two adjacent bedrooms downstairs. Niamh's bed was made with Peppa Pig duvet covers and she has a Peppa Pig poster with her name on, above the bed. The last three days have been incredible. Niamh has been gradually getting better. We had a few smiles today (we had no smiles at all last week). She is still struggling with the itchiness and uncontrollable arm movements but she is managing a lot better. She hasn't needed any tranquilisers since Friday. She falls asleep on her own. We all sleep together as a family. The nurses (who are dressed in normal clothes) have taken over the medicines so we can all sleep at night. Our days are all about spending time with the girls. We have made use of their hydrotherapy pool every day since we have been here. When we go in we have the pool to ourselves, they put some nice relaxing music, lights off, and Niamh loves it. She is so calm and relaxed it is wonderful. When her lines came out a couple of weeks ago, both Niamh and Emilie were happy that they would be able to go swimming together again. On Friday we didn't think we would get the opportunity. Now we have been THREE times and if all is well we will continue to go every day. Acorns also has a multisensory room which is good fun and the most amazing garden. We have been able to take the girls out a lot.
So last week was horrible, these last few days have been a little nicer. Niamh is unfortunately not the child she was two weeks ago, she has lost a lot of her brightness and sparkle. Yet she is amazing us all once again by her sheer determination. The last few days have been so special. We are grateful for every minute, hour, day we get to spend together as a family. Emilie is doing well, she says we are on holiday in Acorns. She has everything she needs here, even a 'making room'. Most of the staff already know that she wants to be an artist when she grows up.
http://www.acorns.org.uk/our-hospices/acorns-in-birmingham
Wednesday, 17 August 2011
Headaches
Tough couple of days, Niamh has started to get what we believe to be severe headaches. We've been stepping up her pain medication and now she is on regular oral morphine. Tomorrow the Macmillan team will review giving her a background dose of morphine leaving the oral morphine when required.
At the same time we have been investigating whether her shunts are overdraining or not. We think this could be the cause (partly) of the headaches. This does fit with what has been happening to Niamh since her MRI last week. Headaches which do not respond to pain killers, the sunken look to the scars on her head and that she gets some relief from lying down (which would be good if she wanted to lie down!).
The neurosurgeons have adjusted her shunts from 1.5 to 2 on her left (VP shunt) and from 1 to 1.5 on her right (subdural shunt). If there is no improvement in the morning we'll contact them again and they may consider a CT scan to check the size of the ventricles in her brain.
With all codeine, ibruprofen and then morphine, Niamh seems to be starting to pick up side effects such as itching and some tummy discomfort too.
She has settled now after we've topped up all her medicine and applied special anti itching cream. She's sleeping in our bed tonight and we are listening to the music from the Prayers For Niamh event that Muireann, Helene's cousin, has kindly set up.
If you don't have access to facebook, here is Muireann's message:
Hello friends,
I am inviting you to become members of this group to pray for my cousins little 3 year old who is very very ill.
Niamh has a very aggressive brain tumour and although she has fought valiantly over the last year she seems to be losing the fight now.
As I lit my sacred candle today for her at 3, to pray for her, bring her to my heart and mind, I thought how nice it would be if we could all remember her in our prayers or hearts every day at any time but in particular between 3 and 4 pm.
I would really appreciate it if you can think of her and her family...mum Helene, dad Alex and older sister Emilie during this very difficult time. I thought that if you would like to pray or meditate then let's do it together as our own little community...light a candle, send her your love, sit still, pray to your God, listen to some inspirational music...whatever works..if we could all do it around the same time every day...well...you never know...the collective positive energy may just help...somehow.
You can follow her progress on http://niamhsilk.blogspot.com/
Thank you,
All my love,
Muireann
x
Monday, 15 August 2011
A very special Weekend
Niamh is now 3 years old! We know we are lucky that she was able to celebrate her 3rd birthday but I do wish it could have been under different circumstances.
Despite not feeling well, Niamh's face lit up when Nanny, Mike and Auntie Caitlin arrived on Saturday and when Uncle Fred, Auntie Aislinn and her three French cousins Camille, Marie and Amelie arrived on Sunday morning. Thank you so much to all of you for coming over at such short notice.
We had planned the party in Granny and Poppa's garden. Thanks to them, Alex and many others (you know who you are) it looked fantastic. By the time I arrived with Niamh the garden looked amazing. Our tent was up for Niamh to rest in. She spent the first part of the afternoon in the tent alternating opening presents, seeing her friends and resting. We were not sure if she was going to feel well enough to come out of the tent but around 5pm (after having had nurofen, codeine and paracetemol), she suddenly decided to put her princess dress on and come out. It was wonderful. She played a few games with her little friends and cousins, amongst which 'What's the time, Mr Wolf', her favorite game. She enjoyed listening to everyone sing 'happy birthday' to her. Seeing her surrounded by all the children felt great.
Thank you to everyone who came and made the day so special for Niamh and all of us.
We were expecting her to be very tired today, but she did not sleep all day. Thanks to advice from Mike and the Macmillan nurse, we seem to have controlled her headaches a bit better today with more regular painkillers (ie. avoiding peaks of pain). She enjoyed watching the videos of her party and going for a walk.
It was hard saying good bye to all the French family today. In moments like these, I really wish we lived close to everyone we love, that includes all of you in France and Ireland (:)).
How about Emilie? She seems to be coping ok so far. She loved the party yesterday, she loved spending time with her cousins and having that feeling of togetherness with them. It was nice to see her happy knowing how tough things are going to be for her over the next few weeks.
Despite not feeling well, Niamh's face lit up when Nanny, Mike and Auntie Caitlin arrived on Saturday and when Uncle Fred, Auntie Aislinn and her three French cousins Camille, Marie and Amelie arrived on Sunday morning. Thank you so much to all of you for coming over at such short notice.
We had planned the party in Granny and Poppa's garden. Thanks to them, Alex and many others (you know who you are) it looked fantastic. By the time I arrived with Niamh the garden looked amazing. Our tent was up for Niamh to rest in. She spent the first part of the afternoon in the tent alternating opening presents, seeing her friends and resting. We were not sure if she was going to feel well enough to come out of the tent but around 5pm (after having had nurofen, codeine and paracetemol), she suddenly decided to put her princess dress on and come out. It was wonderful. She played a few games with her little friends and cousins, amongst which 'What's the time, Mr Wolf', her favorite game. She enjoyed listening to everyone sing 'happy birthday' to her. Seeing her surrounded by all the children felt great.
Thank you to everyone who came and made the day so special for Niamh and all of us.
We were expecting her to be very tired today, but she did not sleep all day. Thanks to advice from Mike and the Macmillan nurse, we seem to have controlled her headaches a bit better today with more regular painkillers (ie. avoiding peaks of pain). She enjoyed watching the videos of her party and going for a walk.
It was hard saying good bye to all the French family today. In moments like these, I really wish we lived close to everyone we love, that includes all of you in France and Ireland (:)).
How about Emilie? She seems to be coping ok so far. She loved the party yesterday, she loved spending time with her cousins and having that feeling of togetherness with them. It was nice to see her happy knowing how tough things are going to be for her over the next few weeks.
Friday, 12 August 2011
Home
We are home and even though it feels very strange this time round, it is nice to be home.
Niamh started on steroids on Wednesday evening and it made a massive difference. She woke up the next morning at 6am, poked her little face up to see if I was awake and gave me a look to say: 'right, what shall we do?'. It was amazing to see my beautiful little girl smile again. We had a lovely day on the Ward (we knew we were going home later on in the day so it helped). We were overwhelmed by the kindness of the staff from Ward 10 as always. They sang her happy birthday and gave her a lovely present, a nice princess trolley so she can make us all some tea and coffee. Her favourite physios, Becky and Claire came to see her, the Speech and Language therapist, Jo also came. Niamh and we all as a family have become very fond of all the Ward 10 nurses and everyone who has helped with her treatment. We started in Bed 7 in Ward 10 on Wednesday 20th October and we left yesterday after having spent 10 days in Bed 7 again!
We had a lovely evening as a family last night. It is scary how many medicines Niamh is now on: steroids, various painkillers, antisickness, antibiotics to treat the possible chest infection. We have also been given a huge suitcase of medicines. The aim is for us to remain at home without the need to visit the hospital. If we are concerned about anything, the community nurses will come and should have everything they need in the 'suitcase'.
Emilie asked many questions about Niamh's scan last night. She knows Niamh is a lot more poorly than she was two weeks ago and she was worried. She wanted to know what other therapy we could try. Telling her that there was nothing more we could do was heartbreaking. She now knows what lies ahead over the next few short weeks. As you can imagine, she was very very upset and cried a lot. She loves her sister so much, it seems so unfair to have to make her go through this at such a young age. Today she has been fantastic, she is concentrating on enjoying our time with Niamh and is thinking of special things we can do together as a family.
This morning was a little stressful. We remembered in the night that Niamh's shunts had not been checked after the MRI scan on Wednesday. Both Niamh's shunts are programmable, the settings of which can be altered in the MRI (anything magnetic in fact can change their settings). As she was asleep we decided to wait till the morning. By the morning we could clearly see that the shunts were over draining. I took her to A&E/Ward 10 and the settings on both shunts were totally wrong. It is likely that the overdraining over the last 48 hours has been causing Niamh some more headaches today. As if she didn't have enough to cope with. Hopefully it should resolve itself over the next 48 hours.
Both girls are really looking forward to Niamh's princess birthday party on Sunday. French uncle, aunties, cousins, grandparents are all coming over, many of their little friends will be there too. We are praying that Niamh will feel well enough on the day to fully enjoy it.
Wednesday, 10 August 2011
Cancer
Today Niamh had an MRI scan. There was some priority to get it done as Niamh has really not been herself for the last week. Signs of tumour progression have been there along side the fevers she has been having.
We hoped that her symptoms could be explained by the fever and what we'd read about early late effects of radiotherapy being very like tumour progression. We'd also read and been told that the post radiotherapy scan could be inconclusive due to the effects of the radiation.
Unfortunately the scan was far from inconclusive.
Niamh has a very aggressive tumour which at the original site has grown to about 5cm in diameter. Niamh also has areas of tumour in the spaces around the outside of her brain and coating the walls of her ventricles.
We have some options but realistically they are limited now. Our focus and that of the hospital is on trying to get Niamh feeling a bit better and home for her birthday on Sunday.
Tuesday, 9 August 2011
Fever is back
We thought Niamh's infection was coming to an end but unfortunately her fever is back since 2am last night and keeps creeping up. She has already had three doses of calpol today.
Despite the fevers, Niamh has seemed a little better in herself today (once calpol kicks in). We had a good physio session. Niamh has lost a lot of strength in the last week. Her hands are also a lot weaker than they were and she struggles with them. Still she was able to walk to the playroom and back which she wasn't able to do yesterday.
As far as the MRI is concerned, we are still struggling to come to terms with what happened yesterday. We have now been told that she is on the "extras" list for tomorrow, ie. if there is a cancellation she will get a slot. So she will need to be starved once again from 3am and we are not guaranteed that she will get a slot. Another long day of waiting. Supposedly if she does not have the MRI tomorrow, they will definitely give her a slot on Friday.
As for the infection, we still have no idea what is causing it. This is getting very worrying. All the cultures they have taken so far have come back negative, still no results from her line taken on Saturday evening. The Consultant oncologist asked for Niamh to have a chest Xray today to make sure there is no infection in her chest. We do not yet have the results but the doctor did say it would be unlikely as her chest sounds fine. The neurosurgeons are not keen to intervene yet, they want to see the scan first. One possibility is that one or both of her shunts could be infected. This would be really bad news.
She was very brave today, the cannula in her hand which she needs for the IV antibiotics got blocked, they had to remove it and put a new one in. She now has one in her left hand. It was not pleasant. She also needed a blood test which was done by pricking her thumb and squeezing it hard for about 10 mins. Once again very unpleasant. Plus we had to pass a new NG tube as she got so upset with the cannula that she had a little vomit and the tube came out. She really has had her fair share.
We are still hoping and praying that she will be out of hospital by the end of the week so she can enjoy her birthday on Sunday.
Despite the fevers, Niamh has seemed a little better in herself today (once calpol kicks in). We had a good physio session. Niamh has lost a lot of strength in the last week. Her hands are also a lot weaker than they were and she struggles with them. Still she was able to walk to the playroom and back which she wasn't able to do yesterday.
As far as the MRI is concerned, we are still struggling to come to terms with what happened yesterday. We have now been told that she is on the "extras" list for tomorrow, ie. if there is a cancellation she will get a slot. So she will need to be starved once again from 3am and we are not guaranteed that she will get a slot. Another long day of waiting. Supposedly if she does not have the MRI tomorrow, they will definitely give her a slot on Friday.
As for the infection, we still have no idea what is causing it. This is getting very worrying. All the cultures they have taken so far have come back negative, still no results from her line taken on Saturday evening. The Consultant oncologist asked for Niamh to have a chest Xray today to make sure there is no infection in her chest. We do not yet have the results but the doctor did say it would be unlikely as her chest sounds fine. The neurosurgeons are not keen to intervene yet, they want to see the scan first. One possibility is that one or both of her shunts could be infected. This would be really bad news.
She was very brave today, the cannula in her hand which she needs for the IV antibiotics got blocked, they had to remove it and put a new one in. She now has one in her left hand. It was not pleasant. She also needed a blood test which was done by pricking her thumb and squeezing it hard for about 10 mins. Once again very unpleasant. Plus we had to pass a new NG tube as she got so upset with the cannula that she had a little vomit and the tube came out. She really has had her fair share.
We are still hoping and praying that she will be out of hospital by the end of the week so she can enjoy her birthday on Sunday.
Monday, 8 August 2011
No Scan for Niamh
Niamh didn't have an MRI scan today. She starved all day for her appointment at 3.30 and at 5 we were told that she would not get scanned today. The radiology department said "they would try to fit her in later in the week". You can imagine the way you feel when you're told this and you've known about this important date for 6 weeks.
We got clarification from Niamh's oncology consultant that he would speak with the head of radiology tomorrow morning. The earliest her scan will be is Wednesday as this is the next time they have a list for patients needing a general anesthetic. Ironically the builders were bringing in the pieces of Birmingham Children's Hospital's 3rd MRI scanner as I walked into the hospital, hopefully it will bring much needed capacity.
In the mean time Niamh was feeling quite good this morning and was up and about for her physio. This afternoon she was quite a lot grumpier and not quite her self. It may have just been lack of food. She seemed to lack energy and only wanted to watch her dvds. She was a bit shaky too. Temperature has stayed down in the low 37's which is great.
Unfortunately, Niamh was sick later when we started her food so we are a little concerned about her now. It seems like she should be getting better as the infection goes away but she seems to be getting a little worse in herself, just without the temperature. Time will tell, an MRI today could have also told, but now it's back to time. All could be explained by early late effects of Radiotherapy or many other things.
At the end of the day we were a little caught up in the riots in Birmingham, the childrens hospital was recommending parents not to leave and had locked their doors. It was quiet there when I left, I hope it stays that way through the night.
We'll update you on the scan date tomorrow when we know more.
Sunday, 7 August 2011
Sunday
Niamh slept well last night I changed her pull up nappy with her asleep lying down as she was out for the count. She had paracetamol about 10pm which kept her fever down through the night. at 4am she was back to 38 point something and had some more paracetamol.
Liz, Niamh's nurse had warned me that Niamh would have to give a blood sample in the morning. Without Niamh's central line (which makes taking blood easy and painless) this would be a more manual job involving a dr, a needle and her foot. That central line was actually quite handy.
So Niamh was the ward 10, 5am wake up, alarm clock as she screemed "dr, stop sticking that **!*&&*! needle in my foot ......" in rather less words. She was very brave though, especially as we had to repeat the same thing later in the day.
In the morning Niamh was very tired, she had a sleep for a couple of hours. By lunchtime we were waiting for her fever to return as the paracetamol wore off. It did come back but slightly less than before, mid to high 37s. We were very relieved it didn't go above this. Fingers crossed that removing the line has done the trick.
Niamh did seem a bit poorly in the afternoon, she had a couple of sicks and we had to replace her tube twice. Hopefully it was just her getting used to the food again and fighting off the infection and her residual fever
Tonight her temp is still mid to low 37s so it still looks like we're going in the right direction.
Her blood counts today were:
HB 10.4
White cells 4
Neutrophils 2.5
Platelets 122
All good as well.
So, sleep tonight, ready for an MRI scan tomorrow. Big day.
Saturday, 6 August 2011
Lines Out
It has been a very very long day. Niamh was starved from 3am for possible line removal at 9am. Unfortunately some more urgent cases came first and Niamh was only called in at 7.30pm. A long day of waiting.
The 'surgery' went well. It wasn't really a surgery, they say that they simply pulled the lines out. She now has a cannula in her right hand. I doubt she will like it tomorrow when she sees it, but I am sure she will be glad to be free of her wigglies (hickman lines). She was back on the ward by 8.15pm.
Let's hope for a fever free day tomorrow. It is actually lovely to see her without hickman lines again. We really hope she won't need new ones.
Click here to see what a hickman line looks like. She had hers since November.
Emilie has been fantastic today. She spent the afternoon making things next to Niamh and making friends. They haven't seen each other much this week so it was lovely to have them reunited.
The 'surgery' went well. It wasn't really a surgery, they say that they simply pulled the lines out. She now has a cannula in her right hand. I doubt she will like it tomorrow when she sees it, but I am sure she will be glad to be free of her wigglies (hickman lines). She was back on the ward by 8.15pm.
Let's hope for a fever free day tomorrow. It is actually lovely to see her without hickman lines again. We really hope she won't need new ones.
Click here to see what a hickman line looks like. She had hers since November.
Emilie has been fantastic today. She spent the afternoon making things next to Niamh and making friends. They haven't seen each other much this week so it was lovely to have them reunited.
Friday, 5 August 2011
Fever remains
Despite adding yet again a new antibiotics yesterday evening (Meropenem), Niamh still had a high fever in the night, this morning and again this afternoon. Today she has been particularly unwell. Not many smiles.
All the blood cultures they have done so far have come back negative. They sent a new one this morning. All the other tests have come back negative. As they don't know the source of the infection, they have decided to treat it as if it is a line infection. They plan to take her central lines out tomorrow morning, hopefully she will be first on the list. The surgery should not take too long, perhaps an hour or so.
They are hoping that once the lines are out, the antibiotics will clear the infection more easily. If it doesn't then they may have to consider tapping the shunts to see if they are infected. We really hope it doesn't come to that.
It is now likely that Niamh will remain in hospital over the weekend and most likely have the MRI scan as an inpatient on Monday afternoon.
Stress levels are high!
All the blood cultures they have done so far have come back negative. They sent a new one this morning. All the other tests have come back negative. As they don't know the source of the infection, they have decided to treat it as if it is a line infection. They plan to take her central lines out tomorrow morning, hopefully she will be first on the list. The surgery should not take too long, perhaps an hour or so.
They are hoping that once the lines are out, the antibiotics will clear the infection more easily. If it doesn't then they may have to consider tapping the shunts to see if they are infected. We really hope it doesn't come to that.
It is now likely that Niamh will remain in hospital over the weekend and most likely have the MRI scan as an inpatient on Monday afternoon.
Stress levels are high!
Thursday, 4 August 2011
Hot Hot Hot
Niamh's temperature keeps on spiking. The doctors added a stronger antibiotics yesterday afternoon, vancomicin. I was hoping it would work but her temperature spiked last night and again this morning. Her temperature is rising higher than earlier on in the week. The doctor has been again this morning, he is waiting for the results of the blood cultures taken on Tuesday night. Monday night's blood cultures were fine.
So three days worth of antibiotics and no improvement.
So three days worth of antibiotics and no improvement.
Wednesday, 3 August 2011
Back in Hospital
We had a lovely weekend, camped in Alex' parents' garden on Saturday with Ada and George. The girls loved it. Niamh was v excited about sleeping in the tent. I was a bit anxious about it but it went v well and Niamh slept all the way till 6.30am which for camping is pretty good.
Unfortunately she developed a small temperature on Sunday during the day. It stayed under 38 so we were hoping it would go away by itself. Yet by Monday evening, typically minutes before Adam and Chantal's arrival Niamh's temperature spiked. She was admitted on Monday evening. We are on Ward 10, the neurosurgical ward. As she is not neutropenic and as she has had a cold for now 10 days they first tried to treat her with amoxyllin which is a bit kinder than gentimicin. Unfortunately she was still warm and unsettled all day yesterday and when her temperature spiked to 38.8 last night they changed her antibiotics to tazocyn. I wish I could say it is making a difference but nope. She is still warm today, still unsettled. We are waiting to see the doctors today to find out if they have any ideas what is causing her temperature.
On a neuro side, Niamh is doing well. She is doing a lot of walking in and out the ward. We have been to the playground downstairs a couple of times. Her right hand is weaker than it was. The physio reassured me that it is not specially a sign of tumour regrowth. She said that when children have a toning pb in their limbs it often gets worse as they get more active and grow taller. Hopefully more exercise will help. The toning in her legs seems fine at this stage.
Scan on Monday, hopefully we will be home before then.
Unfortunately she developed a small temperature on Sunday during the day. It stayed under 38 so we were hoping it would go away by itself. Yet by Monday evening, typically minutes before Adam and Chantal's arrival Niamh's temperature spiked. She was admitted on Monday evening. We are on Ward 10, the neurosurgical ward. As she is not neutropenic and as she has had a cold for now 10 days they first tried to treat her with amoxyllin which is a bit kinder than gentimicin. Unfortunately she was still warm and unsettled all day yesterday and when her temperature spiked to 38.8 last night they changed her antibiotics to tazocyn. I wish I could say it is making a difference but nope. She is still warm today, still unsettled. We are waiting to see the doctors today to find out if they have any ideas what is causing her temperature.
On a neuro side, Niamh is doing well. She is doing a lot of walking in and out the ward. We have been to the playground downstairs a couple of times. Her right hand is weaker than it was. The physio reassured me that it is not specially a sign of tumour regrowth. She said that when children have a toning pb in their limbs it often gets worse as they get more active and grow taller. Hopefully more exercise will help. The toning in her legs seems fine at this stage.
Scan on Monday, hopefully we will be home before then.
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