Today was another tough day. Niamh seemed quite grumpy, by then very constipated. She did not enjoy the physio session and did not enjoy the speech and language specialist either. The speech and language specialist was trying to assess Niamh's swallowing. Since the surgery, she has a nasal gastric tube. Unfortunately Niamh was not interested.
In the afternoon, the doctors took her left drain off.
Not long after Niamh had a seizure. It was horrible. She went rigid and then her eyes looked up in the corner. It took her quite a few hours to get back to her normal self. Once she did she seemed much better than before.
Her talking is as good a pre surgery.
Wednesday, 27 October 2010
Tuesday, 26 October 2010
Day 4 and 5 After Surgery
On Monday (4 days after the surgery) Niamh started making good progress, she started smiling at the nurses. Today, we had some giggling and first session with the physio, mainly encouraging her to grab objects using both hands and kick with her legs.
Saturday, 23 October 2010
Intensive Care for 40 Hours
When we arrived in intensive care, we saw our little girl in the middle of the room with her two nurses Julie and Becca. Niamh had a bandage on her head and two drains coming out of each side of her brain. She was intubated through her mouth. The tape holding the tube took over most of her face. Her hands and feet had cannulas, she had a catheter to monitor her urine output. It was hard to find a free area of skin to kiss. Yet she looked beautiful and peaceful. She was connected to various machines.
The nurses were fantastic, they explained to us everything they were doing. As she was due to have a post op MRI the next day, they kept her sedated and under morphine till the Friday afternoon. Mr Kay showed us the results of the scan and whilst there was still a big mass, it was reassuring to see that it was no longer life threatening and that the fluid in her brain was able to pass. Mr Kay explained that we would need to be very patient with her progress, that she may not be able to move her limbs, or talk, etc. Time would tell.
They stopped the sedation and morphine on the Friday afternoon. By the evening she started slowly to open her eyes. Her blood counts and urine were all fine. In the middle of the night they decided that she was able to breathe on her own, it seemed quite a tricky judgment to make. They worry that if the child wakes up too much they may get very scared with the tube and so it is often best to take it off before they get stressed. Luckily it went well.
Niamh was looking around, it was hard to tell if she could recognise us, she looked scared and sad.
Her voice (when crying or saying no) was very faint to start with but gradually got back to normal. By Saturday morning she had showed slight movements in her four limbs which was very reassuring. Her right side, both leg and arm was much weaker.
By lunchtime, she was assessed fit to go back to Ward 10.
The nurses were fantastic, they explained to us everything they were doing. As she was due to have a post op MRI the next day, they kept her sedated and under morphine till the Friday afternoon. Mr Kay showed us the results of the scan and whilst there was still a big mass, it was reassuring to see that it was no longer life threatening and that the fluid in her brain was able to pass. Mr Kay explained that we would need to be very patient with her progress, that she may not be able to move her limbs, or talk, etc. Time would tell.
They stopped the sedation and morphine on the Friday afternoon. By the evening she started slowly to open her eyes. Her blood counts and urine were all fine. In the middle of the night they decided that she was able to breathe on her own, it seemed quite a tricky judgment to make. They worry that if the child wakes up too much they may get very scared with the tube and so it is often best to take it off before they get stressed. Luckily it went well.
Niamh was looking around, it was hard to tell if she could recognise us, she looked scared and sad.
Her voice (when crying or saying no) was very faint to start with but gradually got back to normal. By Saturday morning she had showed slight movements in her four limbs which was very reassuring. Her right side, both leg and arm was much weaker.
By lunchtime, she was assessed fit to go back to Ward 10.
Thursday, 21 October 2010
21st Oct 2010 - First Surgery (12 hours)
Niamh never woke up the night after the MRI but her blood pressure and heart rate were stable, she responded to the eye test they do to check pressure in the head.
However at 8am, when the nurse came to do the hourly obs, Niamh would not wake up at all, her limbs had gone all floppy and the pupils in her eyes were not only huge but not reacting to light. The next thing I knew there were a number of doctors, surgeons, nurses around the bed and I was taken away in a quiet room. There a registrar explained that Niamh had gone into a coma and needed to go into theatre immediately. I was told about the aim of the operation as well as the risks and had to sign a consent form (the first of many).
Then I was able to follow Niamh to the room next to the theatre, kiss her and leave her in the hands of the surgeons.
Then the wait began. We were told the surgery would take 4 to 6 hours. Niamh went into theatre at 9am and came out at 9pm in intensive care. The consultant Mr Kay, explained to us that it had been a very tricky operation, the first part had been to put two drains in her head to relieve the pressure and then the second part to remove as much as possible of the tumour. He believed that they had successfully removed about 60 percent. They seemed quite sure it was a cancerous tumour, but that it would take a couple of weeks to know what we were dealing with.
Mr Kay explained that she had to be in intensive care due to the length of her surgery and also due to the many blood transfusions.
However at 8am, when the nurse came to do the hourly obs, Niamh would not wake up at all, her limbs had gone all floppy and the pupils in her eyes were not only huge but not reacting to light. The next thing I knew there were a number of doctors, surgeons, nurses around the bed and I was taken away in a quiet room. There a registrar explained that Niamh had gone into a coma and needed to go into theatre immediately. I was told about the aim of the operation as well as the risks and had to sign a consent form (the first of many).
Then I was able to follow Niamh to the room next to the theatre, kiss her and leave her in the hands of the surgeons.
Then the wait began. We were told the surgery would take 4 to 6 hours. Niamh went into theatre at 9am and came out at 9pm in intensive care. The consultant Mr Kay, explained to us that it had been a very tricky operation, the first part had been to put two drains in her head to relieve the pressure and then the second part to remove as much as possible of the tumour. He believed that they had successfully removed about 60 percent. They seemed quite sure it was a cancerous tumour, but that it would take a couple of weeks to know what we were dealing with.
Mr Kay explained that she had to be in intensive care due to the length of her surgery and also due to the many blood transfusions.
Wednesday, 20 October 2010
First Night on Ward 10
Niamh did not wake up after the sedation for the MRI. One of the neurosurgeons came to see us to warn us that they may need to operate on her in the night to place a drain in her brain to relieve pressure in her brain. They reassured us that they were hoping she would be able to wait till her surgery the following afternoon or the following day.
Lucky and Unlucky with the Scan
On the morning of her scan, Niamh wasn't feeling very well. We were told to try and keep her awake so that the sedation would work better but all she wanted to do is sleep. She needed to drink three syringes worth of sedation. She hardly took them that she vomited most if not all. She went to sleep anyway.
During the whole MRI Scan (which lasts about 45 minutes and is incredibly noisy), we sat near the machine, scared that she would wake up. Half way through the scan, the radiographer came in to put some contrast fluid down the cannula. Unfortunately the cannula was not working. He told us he could try and put a new cannula in, knowing that she may wake up. He said that for Niamh's scan she really did need the contrast. If she did wake up then we would need to come back and complete the scan another day, no pressure!
He successfully put a cannula in, and was able to finish the scan as planned.
We hardly went back upstairs, that the nurses came to tell us that we had to go to Ward 10 and someone would be speaking to us. In the meantime, we picked up a message on our mobile from Dr Sunderland saying that they now knew the cause of Niamh's problems and that our consultant would now be Mr Walsh.
When we walked into Ward 10, we still did not know what was wrong with Niamh but seeing all the children with bandages over their heads, it was clear that whatever it was, she was going to have brain surgery.
So all in all, we were lucky that the MRI Scan was completed without Niamh waking up and extremely lucky that it was brought forward. However we were very unluckly as Niamh has a very very large tumour in the middle of her brain.
During the whole MRI Scan (which lasts about 45 minutes and is incredibly noisy), we sat near the machine, scared that she would wake up. Half way through the scan, the radiographer came in to put some contrast fluid down the cannula. Unfortunately the cannula was not working. He told us he could try and put a new cannula in, knowing that she may wake up. He said that for Niamh's scan she really did need the contrast. If she did wake up then we would need to come back and complete the scan another day, no pressure!
He successfully put a cannula in, and was able to finish the scan as planned.
We hardly went back upstairs, that the nurses came to tell us that we had to go to Ward 10 and someone would be speaking to us. In the meantime, we picked up a message on our mobile from Dr Sunderland saying that they now knew the cause of Niamh's problems and that our consultant would now be Mr Walsh.
When we walked into Ward 10, we still did not know what was wrong with Niamh but seeing all the children with bandages over their heads, it was clear that whatever it was, she was going to have brain surgery.
So all in all, we were lucky that the MRI Scan was completed without Niamh waking up and extremely lucky that it was brought forward. However we were very unluckly as Niamh has a very very large tumour in the middle of her brain.
Tuesday, 19 October 2010
Wait for the Scan
The next few days Niamh was okayish. Her shakiness became more a balance issue. She was no longer able to sit up. By the end of the week, she was getting tired more and more quickly and needed to lie down regularly.
We heard from Dr Sunderland the day after our appointment. He told us that we would get a letter for the MRI Scan for the 3rd November (ie. in three weeks) but that he would try his best to get us an earlier date. He was hoping to get one for Friday 22nd October.
He said to take Niamh to A&E immediately if her symptoms became worse.
On Friday 15th October, we received a letter for an MRI Scan on Wednesday 20th October. Even though it was earlier than first thought, it still felt like a long wait. It was obvious by then that Niamh's condition was getting worse very quickly.
We heard from Dr Sunderland the day after our appointment. He told us that we would get a letter for the MRI Scan for the 3rd November (ie. in three weeks) but that he would try his best to get us an earlier date. He was hoping to get one for Friday 22nd October.
He said to take Niamh to A&E immediately if her symptoms became worse.
On Friday 15th October, we received a letter for an MRI Scan on Wednesday 20th October. Even though it was earlier than first thought, it still felt like a long wait. It was obvious by then that Niamh's condition was getting worse very quickly.
Tuesday, 12 October 2010
The Shock Begins
Niamh was particularly unwell on the day we saw Dr Sunderland. She seemed very lethargic, very pale and she vomited whilst the paediatrician examined her.
Dr Sunderland told me that they had ruled out leukaemia (from the blood test from the previous day). I had not even realised this was a possibility so it was a shock and relief to hear that it was not leukaemia.
He then said that he would like Niamh to have a brain MRI scan as soon as possible to ryle out two types of brain tumours which can cause the shakiness and loss of balance as well as a urine test to rule out an abdomen cancer which could also cause similar symptoms.
I fell sick. Lindsay was very supportive and they gave me time to get myself together and call Alex before sending us for more blood tests.
That night was horrendous.
Dr Sunderland told me that they had ruled out leukaemia (from the blood test from the previous day). I had not even realised this was a possibility so it was a shock and relief to hear that it was not leukaemia.
He then said that he would like Niamh to have a brain MRI scan as soon as possible to ryle out two types of brain tumours which can cause the shakiness and loss of balance as well as a urine test to rule out an abdomen cancer which could also cause similar symptoms.
I fell sick. Lindsay was very supportive and they gave me time to get myself together and call Alex before sending us for more blood tests.
That night was horrendous.
Monday, 11 October 2010
Appointment at the Fracture Clinic
On Monday 11th Oct, we saw Lindsay at the Fracture Clinic. She did not believe that the Fracture was the cause of Niamh's problem. She seemed very concerned about Niamh and decided to refer her to a paediatrician urgently. She also asked that we took Niamh for some blood tests.
On the Monday afternoon, Lindsay called to say that she had managed to get us an appointment for the following day with Dr Sunderland (during his lunchbreak!).
On the Monday afternoon, Lindsay called to say that she had managed to get us an appointment for the following day with Dr Sunderland (during his lunchbreak!).
Sunday, 10 October 2010
Turn for the Worse
Once the appointment was made, Niamh became very tired. She spent most of the weekend (9th and 10th) asleep. Even when awake, she just wanted to lie down.
We knew then that something was seriously wrong.
We knew then that something was seriously wrong.
Friday, 8 October 2010
Screaming Episodes
After a few days of great progress with her motivation to walk, Niamh woke up on two nights, (6th and 7th Oct), screaming. Her legs and toes were rigid, we could not stop her from screaming.
The first night, she must have screamed for a couple of hours. We were so worried that she did not go to nursery on Thursday 7th. She was fine during the day. Happy playing but no walking.
On Friday 8th October, we made an appointment to the Fracture Clinic for the following Monday to check on her progress.
The first night, she must have screamed for a couple of hours. We were so worried that she did not go to nursery on Thursday 7th. She was fine during the day. Happy playing but no walking.
On Friday 8th October, we made an appointment to the Fracture Clinic for the following Monday to check on her progress.
Wednesday, 6 October 2010
Some Progress
After seeing the GP, we continued to encourage Niamh to walk. Progress was at first slow and then it got better for a few days, fom Sunday 3rd to Wed 6th October.
She was keen to walk and was able to take quite a few steps (with our help).
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