It's Tuesday today and Chiara remains well. She is still on Intravenous Antibiotics but I am going to speak to her Consultant today regarding the chances of changing her onto oral antibiotics in a few days so we can head home maybe on Sunday. Starting to feel very isolated in here.
I SO NEED TO GO HOME
Tuesday, 31 May 2011
30th May 2011
Chiara's wounds have healed very well and the infection appears to be clearing. She still has another few days left of her IV so I am expected to be here until Monday.
Chiara has a little cut appearing in her nostril where her NPA has been pressing into. Cream given for this to stop infection there.
I haven't seen any Doctors today. No changes today.
Chiara has a little cut appearing in her nostril where her NPA has been pressing into. Cream given for this to stop infection there.
Sunday, 29 May 2011
29th May 2011
Well another day here in Hospital and Chiara is still improving. She slept well which is great considering the hospital is so light and noisy.
She remains on Intravenous Antibiotics and has had her dressings changed today.
It was my Mum's birthday yesterday so she is coming today and we are meeting my sister at the Modern Homes Exhibition.
5pm - Just back from our afternoon out which was great. We all enjoyed a normal afternoon outside.
Fingers crossed we can go home soon.
She remains on Intravenous Antibiotics and has had her dressings changed today.
It was my Mum's birthday yesterday so she is coming today and we are meeting my sister at the Modern Homes Exhibition.
5pm - Just back from our afternoon out which was great. We all enjoyed a normal afternoon outside.
Fingers crossed we can go home soon.
Saturday, 28 May 2011
28th May 2011
Today I awoke at home and it felt very strange. I had a horrible feeling looking over at an empty cot.
I went off to Lindsay's football game this morning so that was good. I missed spending time with the boys.
Myself, Richard and the boys all left home around lunch time and I took the boys into Glasgow for a little shopping trip and Richard went back to the hospital to look after Chiara.
Myself and the boys arrived back to the ward around 4ish where Chiara looked well.
We had an Indian takeaway brought into the room and we all sat and watched the football and spent another night together as a full family. Lindsay changed into his new PJ's and jumped into the bed with me. Around 10 the boys and Richard headed off home.
Its been a lovely weekend.
I went off to Lindsay's football game this morning so that was good. I missed spending time with the boys.
Myself, Richard and the boys all left home around lunch time and I took the boys into Glasgow for a little shopping trip and Richard went back to the hospital to look after Chiara.
Myself and the boys arrived back to the ward around 4ish where Chiara looked well.
We had an Indian takeaway brought into the room and we all sat and watched the football and spent another night together as a full family. Lindsay changed into his new PJ's and jumped into the bed with me. Around 10 the boys and Richard headed off home.
Friday, 27 May 2011
27th May 2011
Chiara is doing very well. I am very pleased with the progress she is making. She is feeding great and playing well for her age. She is still unable to sit up and falls forward as she has still very little core stability but I have been giving her physiotherapy every day to try and improve this.
Today I feel very tired and exhausted, all these weeks in hospital have eventually caught up with me. The nurses have said they would look after Chiara if I wanted to go home for a night but there is no way I would leave her.
I have a text from my sister in law Sylvia who offers to come and stay overnight with Chiara. I am reluctant to leave her but deep down I know I need a full night sleep and Chiara would be in safe hands with her Auntie Sylvia.
Chiara's Consultant requests more blood from myself and Richard for DNA to be sent to Manchester to match up with Chiara's. It to check how the 2 have formed the mutation. Her Consultant says he is not keen to use Joshua and Lindsay as donors as they are only children themselves and is a lot for them to go through and would be a lot of emotional distress for the whole family. I feel relieved at this as I did not want them to go through the pain of donating but if it was to save Chiara's life then I would have no choice.
Chiara still remains on Intravenous Antibiotics but is improving well.
I headed home at around 8 and left Chiara with Sylvia. It was the hardest thing to do but I felt I needed just one night to try and recuperate a little. In the car going home I miss her already although at the same time I am looking forward to spending a night with my boys.
Today I feel very tired and exhausted, all these weeks in hospital have eventually caught up with me. The nurses have said they would look after Chiara if I wanted to go home for a night but there is no way I would leave her.
I have a text from my sister in law Sylvia who offers to come and stay overnight with Chiara. I am reluctant to leave her but deep down I know I need a full night sleep and Chiara would be in safe hands with her Auntie Sylvia.
Chiara's Consultant requests more blood from myself and Richard for DNA to be sent to Manchester to match up with Chiara's. It to check how the 2 have formed the mutation. Her Consultant says he is not keen to use Joshua and Lindsay as donors as they are only children themselves and is a lot for them to go through and would be a lot of emotional distress for the whole family. I feel relieved at this as I did not want them to go through the pain of donating but if it was to save Chiara's life then I would have no choice.
Chiara still remains on Intravenous Antibiotics but is improving well.
I headed home at around 8 and left Chiara with Sylvia. It was the hardest thing to do but I felt I needed just one night to try and recuperate a little. In the car going home I miss her already although at the same time I am looking forward to spending a night with my boys.
Thursday, 26 May 2011
26th May 2011
Today is Chiara's second ERT. Even although she has a line infection they are still keen to go ahead with infusion therefore so am I. The more ERT we are getting into the quicker we are stopping the Hurlers from spreading so I'm all for that.
She is given her pre meds again before infusion then its set up.
It is very difficult to keep Chiara amused while on this infusion as she is getting so active that she is pulling at every wire and tube in sight. I am guessing this is a good sign with all this activity but it is proving hard work for me at the same time.
After bath tonight I notice Chiara's wound around central line looks a little bit discharging I have asked for her dressing to be changed.
Chiara still has her NPA in and on BI PAP overnight. I am now trained at inserting the NPA, I hate it but if it allows me to get Chiara home permanently then I will do it. I suction her regularly because of the NPA as she gets increased secretions with this in. Its amazing how quickly you learn to do things you never thought you were capable of.
She is given her pre meds again before infusion then its set up.
It is very difficult to keep Chiara amused while on this infusion as she is getting so active that she is pulling at every wire and tube in sight. I am guessing this is a good sign with all this activity but it is proving hard work for me at the same time.
After bath tonight I notice Chiara's wound around central line looks a little bit discharging I have asked for her dressing to be changed.
Chiara still has her NPA in and on BI PAP overnight. I am now trained at inserting the NPA, I hate it but if it allows me to get Chiara home permanently then I will do it. I suction her regularly because of the NPA as she gets increased secretions with this in. Its amazing how quickly you learn to do things you never thought you were capable of.
Wednesday, 25 May 2011
25th May 2011
Chiara is well today but remains on Intravenous Antibiotics.
Her Consultant came in this morning to tell me the swab they had taken from her wound the other night has grown a bug and the lab has recommended she stay on Intravenous Antibiotics for another week. Immediately my heart sinks as I was so looking forward to going home. I am starting to struggle in here now.
Not easy sitting in a wee room, having to ask permission before you do anything and no where to go.
Her Consultant came in this morning to tell me the swab they had taken from her wound the other night has grown a bug and the lab has recommended she stay on Intravenous Antibiotics for another week. Immediately my heart sinks as I was so looking forward to going home. I am starting to struggle in here now.
Not easy sitting in a wee room, having to ask permission before you do anything and no where to go.
Tuesday, 24 May 2011
24th May 2011
Chiara seems back to normal today.
She doesn't seem sore to touch, central line looks like it is healing well.
Chiara's Consultant has asked our permission to have her photographed from now and through her treatment. I agree to this. If it can help someone else understand this terrible disease then I'll do anything.
She doesn't seem sore to touch, central line looks like it is healing well.
Monday, 23 May 2011
23rd May 2011
Chiara awakes this morning a bit upset. She continues on the antibiotics. Today was the day we were supposed to be going home after getting her central line in. Disappointed at not being able to go home but hopefully will be off antibiotics and allowed home soon.
Joshua and Lindsay are coming in today with Richard so the boys can get their blood taken for donor match.
Chiara's Consultant attends along with his colleague, they appear very disappointed that Chiara has got an infection so early on in getting the central line inserted although having a central line infection is fairly common and is one of the drawbacks of having it and we were advised of this at the beginning.
She still has a high temperature so Paracetamol is given 4 hourly to try and get it under control.
Boys arrive and are happy to see us. They find a stethoscope in the room so Lindsay starts playing at Doctors which lightens every ones mood. We take Chiara along to the Ward's sensory room and all enjoy a playful time in there.
By lunch time today Chiara seems a lot better and temperature has returned to normal.
Boys and Richard go home.
Myself and Chiara head down to cafe tonight so I can get some dinner, on the way to the the canteen a piece of building blows off due to the high winds and we have to run into the canteen where shortly after I am being ushered out through the kitchen into a back corridor. Extremely frightening as there is building flying everywhere.
Eventually I return to ward where the nurses were wondering how they were getting me back up to ward as lifts were out of action.
Very eventful night.
Joshua and Lindsay are coming in today with Richard so the boys can get their blood taken for donor match.
Chiara's Consultant attends along with his colleague, they appear very disappointed that Chiara has got an infection so early on in getting the central line inserted although having a central line infection is fairly common and is one of the drawbacks of having it and we were advised of this at the beginning.
She still has a high temperature so Paracetamol is given 4 hourly to try and get it under control.
Boys arrive and are happy to see us. They find a stethoscope in the room so Lindsay starts playing at Doctors which lightens every ones mood. We take Chiara along to the Ward's sensory room and all enjoy a playful time in there.
By lunch time today Chiara seems a lot better and temperature has returned to normal.
Boys and Richard go home.
Myself and Chiara head down to cafe tonight so I can get some dinner, on the way to the the canteen a piece of building blows off due to the high winds and we have to run into the canteen where shortly after I am being ushered out through the kitchen into a back corridor. Extremely frightening as there is building flying everywhere.
Eventually I return to ward where the nurses were wondering how they were getting me back up to ward as lifts were out of action.
Sunday, 22 May 2011
22nd May 2011
Chiara had another good night last night. She has been weighed this morning and she has gained 8 ounces and is now up to 16lb 8. This is fantastic for Chiara as she seemed to stay at 13lb for about 3 months.
It is now lunch time and I am feeling Chiara is a bit unsettled. She has awoken from her morning nap screaming which is not normal for her. She feels hot to touch and in my opinion her neck looks a little redder than it has been.
She takes her lunch well. Paracetamol is given. She falls asleep again for her afternoon nap but awakes yet again screaming and has a definite temperature. Her site area where the steristrip is on her neck is much more inflamed and red. Brufen is given and she is bathed and nurses are called in to look at her neck wound and chest wound. They advise looks okay at the moment. I am positive it is infected but then again I am no nurse.
Chiara is put down for her nights sleep but by midnight she has a high temperature uncontrollable with Paracetamol and Brufen and the on call Doctors are called to come and see her. The Doctor attends and takes bloods from Chiara's line to check for inflammatory markers to see if she has infection. I point out that I feel her neck wound could be infected and they agree. Swabs are taken from both wound sites. Intravenous Antibiotics are started and she has to be observed overnight.
She remains extremely unsettled.
It is now lunch time and I am feeling Chiara is a bit unsettled. She has awoken from her morning nap screaming which is not normal for her. She feels hot to touch and in my opinion her neck looks a little redder than it has been.
She takes her lunch well. Paracetamol is given. She falls asleep again for her afternoon nap but awakes yet again screaming and has a definite temperature. Her site area where the steristrip is on her neck is much more inflamed and red. Brufen is given and she is bathed and nurses are called in to look at her neck wound and chest wound. They advise looks okay at the moment. I am positive it is infected but then again I am no nurse.
Chiara is put down for her nights sleep but by midnight she has a high temperature uncontrollable with Paracetamol and Brufen and the on call Doctors are called to come and see her. The Doctor attends and takes bloods from Chiara's line to check for inflammatory markers to see if she has infection. I point out that I feel her neck wound could be infected and they agree. Swabs are taken from both wound sites. Intravenous Antibiotics are started and she has to be observed overnight.
She remains extremely unsettled.
Saturday, 21 May 2011
21st May 2011
Chiara slept well last night.
She doesn't seem to have had any reactions to the ERT which is great news.
She is feeding extremely well. She is still on her BI PAP overnight and has her NPA in her nose.
She doesn't seem to have had any reactions to the ERT which is great news.
She is feeding extremely well. She is still on her BI PAP overnight and has her NPA in her nose.
Friday, 20 May 2011
20th May 2011
Chiara had a comfortable night, no problems overnight with the central line.
She has had more blood taken today, but was so much easier now she has her central line in. These bloods are her DNA to be sent to Manchester. I think its for future reference so they can look into exactly the type of Hurlers, Richard and I also had bloods taken again, these are being sent away also to be investigated. Chiara has had a 2nd blood sent away for tissue typing so they can look for a cord blood donor. This is when its taken from the umbilical cord of new babies.
ERT is starting today, I am really excited. Before every ERT Chiara will need to be given an Antihistamine drug (Piriton) and Brufen. This is in case she has any reaction to ERT. This is given and hour before her infusion is started.
Its 1.30pm and Chiara's infusion is now up and running. It takes about 3 hours to go through and then she has her flush which takes around 45 minutes. She does not seem to have reacted at all to therapy which is excellent.
Her Consultant comes to tell us he has had a meeting with the Transplant Team who have found 2 possible donors but wish Chiara's brothers Joshua and Lindsay to be tested as well to see if they are a match. Richard is a match but as he carries the Hurlers gene then they would rather use another donor. Both myself and Richard and the boys all need our bloods done to measure enzyme levels as well. Chiara's Consultant comments on how well Chiara is looking regarding her energy and movement.
While Richard and I are alone we talk about how we feel about the boys being tested. Both of us would prefer not to have any of the kids be the donor as it is going to be hard enough emotionally having Chiara in hospital without having another of our children in the ward as well.
She has had more blood taken today, but was so much easier now she has her central line in. These bloods are her DNA to be sent to Manchester. I think its for future reference so they can look into exactly the type of Hurlers, Richard and I also had bloods taken again, these are being sent away also to be investigated. Chiara has had a 2nd blood sent away for tissue typing so they can look for a cord blood donor. This is when its taken from the umbilical cord of new babies.
ERT is starting today, I am really excited. Before every ERT Chiara will need to be given an Antihistamine drug (Piriton) and Brufen. This is in case she has any reaction to ERT. This is given and hour before her infusion is started.
Its 1.30pm and Chiara's infusion is now up and running. It takes about 3 hours to go through and then she has her flush which takes around 45 minutes. She does not seem to have reacted at all to therapy which is excellent.
Her Consultant comes to tell us he has had a meeting with the Transplant Team who have found 2 possible donors but wish Chiara's brothers Joshua and Lindsay to be tested as well to see if they are a match. Richard is a match but as he carries the Hurlers gene then they would rather use another donor. Both myself and Richard and the boys all need our bloods done to measure enzyme levels as well. Chiara's Consultant comments on how well Chiara is looking regarding her energy and movement.
While Richard and I are alone we talk about how we feel about the boys being tested. Both of us would prefer not to have any of the kids be the donor as it is going to be hard enough emotionally having Chiara in hospital without having another of our children in the ward as well.
19th May 2011
We were supposed to go early morning but it is 11am now and we are still waiting, Chiara is getting fed up now as she is hungry.
Had long chats with Surgeons regarding risk of central line and infections etc.
11.30am and that's us now taken Chiara down to theatre. Richard has always taken Chiara into the anesthetic room to have her put to sleep but today I have gathered the strength to do it. It's a horrible experience as I held her and have her struggle while they hold the tiny mask over her face and slowly she stops to struggle and lies limp. I am asked to leave after I have kissed her goodbye. I am sure all this will be worth it in the end and hopefully one day she will realise everything we put her through was to give her the best possible quality of life we could.
We have had the conversation with Chiara's Consultant with regards starting her Enzyme Replacement Therapy (ERT). As Chiara is in between doses, she should be on 1 and half vials but each vial cost £450 so we have agreed to her alternating between 1 and 2 vials each week. This will save half a vial been thrown away. This therapy could be starting in only a couple of days.
Discussion took place the fact that Chiara has a possible milk intolerance, he is now unsure if it was the Hurlers that was causing the diarrhoea as this is another symptom of Hurlers. It could be possible that Chiara is in fact NOT milk intolerant. This is to be discussed with Gastroenterology to see if further testing can be done to make actual diagnosis.
Wednesday, 18 May 2011
18th May 2011
We have arrived back at Hospital today as Chiara is getting her central line inserted tomorrow. Everything seems to be moving extremely fast.
Going into a different Ward today.
Getting a bit fed up with all the different wards we have been on since we first came in but if this is our last move then I can handle it.
Chiara has had her cannula inserted and is already for theatre tomorrow.
Going into a different Ward today.
Getting a bit fed up with all the different wards we have been on since we first came in but if this is our last move then I can handle it.
Chiara has had her cannula inserted and is already for theatre tomorrow.
Monday, 16 May 2011
16th May 2011
We headed back through to Hospital this morning very early as Chiara has her MRI scan at 9am. This is to scan her chest and see if there is any vessels pressing on her airway. She is also getting her Ophthalmic examination today too. Another stomach churning time for Richard and I as we await the results. If her chest MRI shows anything abnormal then she requires surgery to lift whatever vessel is pressing down on the airway, this will delay any further treatment for her Hurlers.
Coffee time for myself and Richard while we wait.
Well more good news has just been given to us, Chiara's MRI of chest was normal. Ophthalmologist has said that her eye examination showed a slight film over her eyes which is in keeping with Hurlers Disease but no damage was visual. She will be monitored in around 6 months time.
WOW how happy do I feel.
Another piece of news is Chiara has been given an anesthetic slot to have her central line put in on Thursday. This is inserted in through the side of her chest and has a duo lumen attached so she can be given her Enzyme Infusion through this and cuts out the need of cannula's being inserted.
We were supposed to be overnight but Chiara has had no side effects from anesthetic today so we are heading back home.
Coffee time for myself and Richard while we wait.
Well more good news has just been given to us, Chiara's MRI of chest was normal. Ophthalmologist has said that her eye examination showed a slight film over her eyes which is in keeping with Hurlers Disease but no damage was visual. She will be monitored in around 6 months time.
WOW how happy do I feel.
Another piece of news is Chiara has been given an anesthetic slot to have her central line put in on Thursday. This is inserted in through the side of her chest and has a duo lumen attached so she can be given her Enzyme Infusion through this and cuts out the need of cannula's being inserted.
We were supposed to be overnight but Chiara has had no side effects from anesthetic today so we are heading back home.
Thursday, 12 May 2011
12 May 2011
Well being back home is great. Chiara is doing well and Richard and I can manage her BI PAP machine fine ourselves.
So happy I took Chiara out shopping today and bought her very first pair of UGGS.
Wednesday, 11 May 2011
11th May 2011
Dont know what is in store for us today.
Yipee Doctors have just been in and feel Chiara is well enough for discharge so we are allowed home on pass until Monday.
HAPPY HAPPY HAPPY HAPPY,cant wait to get home and spend time with my boys .....
Yipee Doctors have just been in and feel Chiara is well enough for discharge so we are allowed home on pass until Monday.
HAPPY HAPPY HAPPY HAPPY,cant wait to get home and spend time with my boys .....
10th May 2011
This morning I was given the news that Chiara has to be reviewed by the Cardiology Team. This is to see if there is any damage to her heart and check how it is functioning. Hurlers affects most of the organs in the body so the Doctors need to ensure her heart is fit for going through the BMT.
By lunch time Chiara has been examined by the Cardiologist who feels clinically Chiara's heart is fine but needs to have things investigated more by an Echo cardiogram. She says her liver feels slightly enlarged (another problem related to Hurlers) but nothing to worry about.
We head down to have Echo cardiogram done late afternoon. I try to look and see on screen if there is anything wrong but I have no idea what I am looking for.
Not long to wait for results as the Cardiologist came back into me not long after we got back from getting the Echo done. She says the Echo show the left side of Chiara's heart is very slightly weak but there is no actual damage evident. She says its as near to normal as it could be for having Hurlers.
At last some good news, maybe this is us turning a corner at last.
She still has her NPA in and on her BI PAP machine at night but every day is improving.
By lunch time Chiara has been examined by the Cardiologist who feels clinically Chiara's heart is fine but needs to have things investigated more by an Echo cardiogram. She says her liver feels slightly enlarged (another problem related to Hurlers) but nothing to worry about.
We head down to have Echo cardiogram done late afternoon. I try to look and see on screen if there is anything wrong but I have no idea what I am looking for.
Not long to wait for results as the Cardiologist came back into me not long after we got back from getting the Echo done. She says the Echo show the left side of Chiara's heart is very slightly weak but there is no actual damage evident. She says its as near to normal as it could be for having Hurlers.
At last some good news, maybe this is us turning a corner at last.
Monday, 9 May 2011
9th May 2011
We are up bright and ready for the week that lies ahead.
We came back into Yorkhill this morning. Everyone is saying how well Chiara looks and I have to agree. She has had her blood taken this morning for tissue typing and Richard and I have also had our bloods taken. She is getting a fresh NPA put in this morning so I couldn't wait to get pictures of her without her tapes on. I am now being trained in cutting the tracheal tube to size and inserting it in.
Friday, 6 May 2011
6th May 2011
Richard and I were sitting by Chiara's cot today when the 2 Consultants came in. Instantly my heart sank and I felt ill. One of the Doctors sensed obviously how I felt and he sympathised. They said the results had come back and Chiara had been confirmed as Hurlers. As much as I was upset I was relieved because as long as we didn't have a definitive diagnosis then there was always the chance she could be a lot worse and possibly have one of the storage disorders that sadly has no treatment available.
We now had the difficult decision of what was the best way to commence with regards treatment to give Chiara the best quality of life. Bone Marrow Transplant was her best chance especially since she was extremely young to have been diagnosed as the majority are not diagnosed until they are around 2 years. We agreed to stay at this Hospital for her treatment and agree to further tests being carried out to check the rest of her body for damage from the disease. She was be commenced on ERT until transplant was organised.
We can go home today now on pass until Monday. Hopefully a more positive happy weekend lies ahead.
We now had the difficult decision of what was the best way to commence with regards treatment to give Chiara the best quality of life. Bone Marrow Transplant was her best chance especially since she was extremely young to have been diagnosed as the majority are not diagnosed until they are around 2 years. We agreed to stay at this Hospital for her treatment and agree to further tests being carried out to check the rest of her body for damage from the disease. She was be commenced on ERT until transplant was organised.
We can go home today now on pass until Monday. Hopefully a more positive happy weekend lies ahead.
Thursday, 5 May 2011
5th May 2011
Chiara is being taken down for an MLB this morning which is really just a look down her airway to see if she has any areas of collapse.
Her ENT Consultant has come this afternoon to tell us that the results of the MLB have shown some degree of floppiness in the wind pipe but as it is related to the Hurlers no surgery will be offered at this time. At first I thought he was just giving up on her but then he quickly pointed out that if Chiara was going for a BMT then there was no point in putting her through surgery if the transplant would improve the problem anyway.
An MRI of chest has been arranged to rule out any vessels pressing on an airway.
She still remains on her BI PAP with pressure of 8 and she still has her NPA in.
Her ENT Consultant has come this afternoon to tell us that the results of the MLB have shown some degree of floppiness in the wind pipe but as it is related to the Hurlers no surgery will be offered at this time. At first I thought he was just giving up on her but then he quickly pointed out that if Chiara was going for a BMT then there was no point in putting her through surgery if the transplant would improve the problem anyway.
An MRI of chest has been arranged to rule out any vessels pressing on an airway.
She still remains on her BI PAP with pressure of 8 and she still has her NPA in.
Tuesday, 3 May 2011
3rd May 2011
Well today I woke up feeling better than I had done in days.
I feel there is a lot of positive now. I know that BMT is not a cure and it cannot undo any damage that has already been done but it does stop the disease from progressing. Chiara will have no improvement to her hearing and her lump on her spine which has turned out to be a Kyphosis due to the Hurlers will be operated on in years to come. The final result of damage to her skeletal frame is unknown and is something we will deal with in years to come. She has further tests to endure to see if there is any other damage to any of her other organs.
She looks well considering and she is eating fabulous.
I had to make another awful decision today, today was the day I decided to give up my work. At this moment I did not know exactly how much care and looking after Chiara would require. I knew she would require multiple visits to hospital over the years. At the end of the day I had to do what was best for my wee girl. I resigned myself to the fact that I would become her full time carer. It broke my heart to written my letter of resignation but it would break my heart even more if something happend to Chiara and I had not given her my full devotion. Everyone usually says they hate their work and sometimes so did I but when you are put in the situation that I have been, is really that bad to get up and go out to a job in the morning ...........
I feel there is a lot of positive now. I know that BMT is not a cure and it cannot undo any damage that has already been done but it does stop the disease from progressing. Chiara will have no improvement to her hearing and her lump on her spine which has turned out to be a Kyphosis due to the Hurlers will be operated on in years to come. The final result of damage to her skeletal frame is unknown and is something we will deal with in years to come. She has further tests to endure to see if there is any other damage to any of her other organs.
She looks well considering and she is eating fabulous.
I had to make another awful decision today, today was the day I decided to give up my work. At this moment I did not know exactly how much care and looking after Chiara would require. I knew she would require multiple visits to hospital over the years. At the end of the day I had to do what was best for my wee girl. I resigned myself to the fact that I would become her full time carer. It broke my heart to written my letter of resignation but it would break my heart even more if something happend to Chiara and I had not given her my full devotion. Everyone usually says they hate their work and sometimes so did I but when you are put in the situation that I have been, is really that bad to get up and go out to a job in the morning ...........
Monday, 2 May 2011
2nd May 2011
Today we returned to Hospital. Walking through the ward again was so hard. All the nurses were asking if we had a great weekend being at home, none of them had been told our horrible news.
We sat in the waiting room waiting to be allocated a bed space for Chiara. We were both anxious as we did not know what lay ahead but we hoped we were going to get answers. I have been trying hard to look for positives but it is hard to look for positives when you don't really know what you are dealing with. I still feel sick and dazed.
Chiara was to have more bloods taken to determine exactly which storage disorder she had.
The bloods were taken shortly after and a Doctor attended with the Respiratory Doctor to consult with us. He explained that he had received a phone call from the Lab late on
Thursday with the results of Chiara's urine and had written this in her notes but did not intend for us to be told until he had a definite diagnosis and he could then go over the options available to us. He told us all the disorders that were possible and the treatments available but sadly no cure. It was just before he left he told us that if he were to say without results which disorder she had it would be Hurlers which is MPS1. Option of treatment for that is Enzyme Replacement Therapy (ERT) where she would get a weekly infusion of the enzyme that she is missing. Then a bone marrow transplant would be performed (BMT). All very scary but at the same time positive. Today we have been given a glimmer of hope for a future with our wee girl and a chance for her to spend time with her brothers. 3 days ago we had nothing and all of a sudden we have been handed a huge chance at giving her a better quality of life.
We sat in the waiting room waiting to be allocated a bed space for Chiara. We were both anxious as we did not know what lay ahead but we hoped we were going to get answers. I have been trying hard to look for positives but it is hard to look for positives when you don't really know what you are dealing with. I still feel sick and dazed.
Chiara was to have more bloods taken to determine exactly which storage disorder she had.
The bloods were taken shortly after and a Doctor attended with the Respiratory Doctor to consult with us. He explained that he had received a phone call from the Lab late on
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