Sunday 30 March 2008
Back to theatre
She had many ups and downs. Being called to ICU by one of the nurses on the Sunday was probably the worst moment. When I got there, with my friend Caroline who had come to see us, they wouldn’t let me in. It was dreadful just waiting there and knowing that when they came out it could be with the worst news. She was just so unstable and several times over the next couple of weeks they had to work hard on her to keep her with us. On this occasion she had suffered a clot in her leg following surgery, it was causing some problems and they were concerned that any break off could cause a stroke or be carried to her heart/lungs. Her right leg was cold and mottled and there was no pulse, so they had to take her back to theatre where they removed an embolism from the femoral artery at her groin. They also closed her chest at the same time as she was on maximum heparin, they needed to prevent her bleeding more than necessary and they wanted to do chest physio to help her shift the bronchiolitis.
Wednesday 19 March 2008
The longest night
It was the longest night - we remained in the PICU parents room - there was nowhere to sleep and we napped on the uncomfortable chairs. It was pretty much light when Mr Sethia came to see us. She was on her way back to PICU and we'd be able to see her shortly. They'd had a hard time getting her off bypass as her LV was only functioning at 9%; it was the start of a long & bumpy road - she just had to fight.
4 February 1994 - The bad news
Again she quickly went down bank and after a couple of days, back I went to the consultant’s clinic where another doctor said he thought she had RSV. He watched her feed and said if she was worse the next day to come back. We got in the car and she was promptly sick again and I burst into tears. She was about 14 weeks old by now.
The next day she looked just awful. She was grey and struggling for breath. It sounded like she was drowning. The cardiologist thinks she’d had a heart attack during the night. We rushed her back to the ward where they put her on a SATs monitor and did some tests for RSV. The nurse commented that the SAT’s machine wasn’t working properly because the oxygen levels were 100% and her heart rate was 200 (& that couldn’t be right ??). We went for a chest x-ray and when we got back they put her on another monitor. Within 10 minutes of us getting back from x-ray all hell broke loose. The film showed that her heart was so enlarged that it was collapsing her left lung. And the new monitor showed her HR was still 200. The paed came to tell us that she had a problem with her heart, possibly a virus, and she would need a scan. At this point I just shut off I think, they were asking me if I needed to know anything but I just said ‘No, its fine’!! Even when they talked about going to the Children’s Hospital (Birmingham) it just didn’t register with me. They said she couldn’t go for the scan for a while, so I left her with her dad and went to collect the boys from school and nursery. When I got back, he was on the phone. The ambulance had arrived to take her so he had to go and he said he would ring me. We were told that she’d be coming straight back and the ambulance would wait.
I truly regret leaving her with Gary that day. I was in complete denial of the seriousness of the situation I think. I don't regret it because he wasn't up to the job - he was and is more than up to the job. It's just that I wasn't there for him or for Emily at possibly the worst moment......
Well when he got to BCH it was a different story. He says that when the doors opened a sea of people greeted him, a full PICU team, who took Emily from him. Even before the echo they said that from the ECG they could tell that she either had a serious congenital defect or a virus and either way they weren’t sure they could do anything for her. They wanted me there immediately.
Gary doesn't speak about how he felt at that point but I know he was badly shocked, close to breaking down I think. I heard it in his voice. It must have been a dreadul call to make as well as to receive.
You can imagine how I felt; they were 50 miles away. My dad drove me and I thought it was the worst hour of my life (little did I know). She'd gone into cardiogenic shock and when I arrived they had ventilated her and were basically waiting for me to say goodbye. So I had two precious minutes with her before they went to catheter and then hopefully to surgery. After a couple of hours they came to say that she had Anomlaous Left Coronary Artery from Pulmonary Artery ALCAPA and she’d gone to theatre, plus she did have bronchiolitis which was an added risk. Her LV function was so poor they could only hope that she’d get through. I vaguely remember someone bringing us tea and explaining about the defect but apart from that the night is a complete blur.
The next day she looked just awful. She was grey and struggling for breath. It sounded like she was drowning. The cardiologist thinks she’d had a heart attack during the night. We rushed her back to the ward where they put her on a SATs monitor and did some tests for RSV. The nurse commented that the SAT’s machine wasn’t working properly because the oxygen levels were 100% and her heart rate was 200 (& that couldn’t be right ??). We went for a chest x-ray and when we got back they put her on another monitor. Within 10 minutes of us getting back from x-ray all hell broke loose. The film showed that her heart was so enlarged that it was collapsing her left lung. And the new monitor showed her HR was still 200. The paed came to tell us that she had a problem with her heart, possibly a virus, and she would need a scan. At this point I just shut off I think, they were asking me if I needed to know anything but I just said ‘No, its fine’!! Even when they talked about going to the Children’s Hospital (Birmingham) it just didn’t register with me. They said she couldn’t go for the scan for a while, so I left her with her dad and went to collect the boys from school and nursery. When I got back, he was on the phone. The ambulance had arrived to take her so he had to go and he said he would ring me. We were told that she’d be coming straight back and the ambulance would wait.
I truly regret leaving her with Gary that day. I was in complete denial of the seriousness of the situation I think. I don't regret it because he wasn't up to the job - he was and is more than up to the job. It's just that I wasn't there for him or for Emily at possibly the worst moment......
Well when he got to BCH it was a different story. He says that when the doors opened a sea of people greeted him, a full PICU team, who took Emily from him. Even before the echo they said that from the ECG they could tell that she either had a serious congenital defect or a virus and either way they weren’t sure they could do anything for her. They wanted me there immediately.
Gary doesn't speak about how he felt at that point but I know he was badly shocked, close to breaking down I think. I heard it in his voice. It must have been a dreadul call to make as well as to receive.
You can imagine how I felt; they were 50 miles away. My dad drove me and I thought it was the worst hour of my life (little did I know). She'd gone into cardiogenic shock and when I arrived they had ventilated her and were basically waiting for me to say goodbye. So I had two precious minutes with her before they went to catheter and then hopefully to surgery. After a couple of hours they came to say that she had Anomlaous Left Coronary Artery from Pulmonary Artery ALCAPA and she’d gone to theatre, plus she did have bronchiolitis which was an added risk. Her LV function was so poor they could only hope that she’d get through. I vaguely remember someone bringing us tea and explaining about the defect but apart from that the night is a complete blur.
Saturday 15 March 2008
Over anxious
Once there they took more bloods and a urine sample and watched her feed. She was fine (aren’t they always?) and I think they decided that I was an over anxious mum. The tests showed a UTI and anaemia and we were sent home with anti-b’s and iron. Next day it was back to normal, Emily feeding very little and vomiting it all back a few minutes later. It was the weekend so we called the emergency doctor who said it was probably the iron or the anti-b’s and to stop giving them and take her back to the GP on Monday. We went back and he changed the meds but wasn’t willing to refer her again. On our way out I saw the HV who weighed her and as she had lost more weight, went over his head and sent us back to the ward. (I have to say that she was brilliant throughout and probably saved Emily’s life as she was so persistent).
So, back we went and she was put on IV meds and had an NG tube passed. We stayed for a few days and she fed okay, although she never seemed really settled. During this stay she had a funny turn which turned out to be the first of her two probable heart attacks. She had been in a bouncy chair on the ward floor when she suddenly went a horrid grey colour, sweaty and started to cry. I asked the nurse to watch her while I went for a bottle, thinking she was probably hungry. When I got back she was floppy in the nurse’s arms. She began to cry again and then fell asleep for about 3 hours. They noted the episode in her records and a couple of days later discharged us again with more iron and anti-bs.
So, back we went and she was put on IV meds and had an NG tube passed. We stayed for a few days and she fed okay, although she never seemed really settled. During this stay she had a funny turn which turned out to be the first of her two probable heart attacks. She had been in a bouncy chair on the ward floor when she suddenly went a horrid grey colour, sweaty and started to cry. I asked the nurse to watch her while I went for a bottle, thinking she was probably hungry. When I got back she was floppy in the nurse’s arms. She began to cry again and then fell asleep for about 3 hours. They noted the episode in her records and a couple of days later discharged us again with more iron and anti-bs.
And so it began......
Everything was fine until, at about 6 weeks her slow weight gain became non-existent and the HV asked me to wake her and feed more often. Despite this she began to lose weight and I changed to mixed breast/bottle feeding to see if it helped. All that did was prove just how little she took and within a few days she began to vomit back most of that. At about the same time she also began to get breathless and sweaty at feeds. My HV wasn’t happy and at the next baby clinic we saw the paed who did a monthly clinic. She did a full exam and took some bloods. A few days later she rang me at home with the results (why didn’t alarm bells ring at this point?) and asked me to take Emily to the GP and give him the results. Our GP didn’t seem concerned at all but at my insistence referred her to our local children’s ward.
24 October 1993 The New Arrival
Emily presented herself happy and healthy (?) on 24.10.1993. She was a few days late, labour was very fast, her heart rate dipped at one point and they panicked a little about getting her delivered immediately but it was otherwise uneventful. She weighed in at almost 10lbs and when we took her home we congratulated ourselves on what a contented child she was. She slept all the time and had to be woken to feed; with two boisterous brothers already at home she fitted right in.
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