Hi everyone,
I'm sure you are all aware, Joshua was born with a congenital heart defect which required surgical intervention to correct. He had a condition known as Tetralogy of fallot
The only way to fix this surgically is through open heart surgery. Joshuas surgeon Mr Asif Hassan operated on Josh on the 20th June. The surgery lasted 7 hours as they found his heart was in a slightly worse condition than they thought. Basically Josh had to have a lot of excess muscle cut away from his right ventricle. This grew as his heart was having to work harder to pump the blood through the narrow pulmonary artery (shown as Stenosis on the diagram above).
We got to visit Josh briefly after he came out of surgery but it wasnt until the next day we became fully aware of how poorly he was.
Heres how Josh looked hours after surgery:
Later on Tuesday night, Josh took a turn for the worse. We were called back to Paediatric ICU to speak with Mr Hassan. He said that there was something wrong and he wanted to re-open Joshs chest to check for problems. As we were there Joshs blood pressure crashed and we stood by whilst the PICU staff fought to save him. This was without doubt the most terrifying thing I have ever seen. Watching your baby fight for life in front of you is an experience I never want to repeat. He eventually was stabilized and was taken down into theatre. Ged and myself were left to wonder what the outcome may be.
We spent hours walking the streets around the Freeman Hospital in Newcastle eventually at 3:00am we got the call, Josh was back from surgery and was stable. It seems that his pulmonary artery had kinked and caused back pressure in his heart, because of this his blood pressure had dropped to levels incompatible with life. I.E his blood was not getting pumped around his body. After a total of 13 hours of surgey in 24 hours, Josh was left with his chest open while he remained on life support, anaesthetized and paralysed he was to remain like this for 5 days.
I know it sounds weird, but during this time Ged and myself got to view Joshs heart, it seemed so small. Its a wonder that Mr Hassan was able to correct the defects.
On Saturday Morning they decided Josh was stable enough to have his chest closed. The procedure took about 1.5 hours.
On Sunday they started to reduce his paralysing agent and Josh started to show signs of movement, although he was still unconscious.
By Monday morning, they were reducing his sedation and Josh opened his eyes for the first time. Although still on a ventilator he seemed to be winning his fight for life. During the course of Monday they reduced his ventilation support, by that evening they told us they were going to remove the ventilator the next morning.
We arrived on Tuesday morning to see Josh free from his ventilator and slight more awake. Although he was still receiving a low sedation dose. The next day or so passed relatively uneventful.
On Thursday evening Josh was awake enough to have a feed from a bottle, the honour fell to Ged as she had been so upset during his time in PICU I was happy to take a back seat. However as Josh was moved back into his cot, his main line in his neck snapped. This resulted in a large loss of blood over Ged, Myself and the cot. Although not an emergency it was a very unsettling experience. We had to go and get cleaned up and they decided to move the IV drugs to canulas in his feet. When we got back the nurses looked very concerned. It appears that one of Joshs pacemaking wires had removed itself. In the above photos theres a thick blue wire this is the one that removed itself fortunately it was found that this wire was not the one that was pacing his heart. So he narrowly avoided another surgery.
During the course of Thursday night though, josh took another turn for the worse.
We arrived on Friday morning to find Josh back on a ventilator. He had gotten into respiratory distress through the night and an ultrasound and an X-ray had revealed a large build up of fluid around his lungs. The Doctors were discussing how best to deal with this and, with our input, it was decided to monitor him on the ventilator with fluid restrictions in place and see if his body re-absorbed the fluid. 48 hours later Joshua came back off the ventilator. He started to wake again on Sunday and by Monday when we arrived on the PICU unit, Josh was awake and alert enough to give us a smile when he saw us. This resulted in many a tear being shed by Ged and myself. The relief was immense.
On Tuesday Morning Josh was taken from PICU to the High Dependency unit on Ward 23 (childrens cardiac ward) This was a huge step for us as it meant his condition had improved a great deal. However our relief was short lived, During the course of Tuesday and Wednesday Josh was very unsettled, crying constantly, terrified of people approaching him and didnt respond to cuddles or feeding. It was decided that he was suffering withdrawal of Morphine. If anyone has seen an adult go cold turkey, its a harrowing experience. In a child its terrifying and so distressing that Ged had to leave the ward. They started Joshua on doses of Methadone and Diazepam to relieve the symptoms. It took 24 hours before he settled down. In all it took 3 attempts to ween him off Methadone. He finally came out of hospital 5 weeks after he went in.
Since August:
Josh continues to improve now, he has a rather large scar down his chest but after everything he has been through his personality is amazing. At 8 months old he continues to develop albeit slightly behind where he should be.
I'm sure you are all aware, Joshua was born with a congenital heart defect which required surgical intervention to correct. He had a condition known as Tetralogy of fallot
The only way to fix this surgically is through open heart surgery. Joshuas surgeon Mr Asif Hassan operated on Josh on the 20th June. The surgery lasted 7 hours as they found his heart was in a slightly worse condition than they thought. Basically Josh had to have a lot of excess muscle cut away from his right ventricle. This grew as his heart was having to work harder to pump the blood through the narrow pulmonary artery (shown as Stenosis on the diagram above).
We got to visit Josh briefly after he came out of surgery but it wasnt until the next day we became fully aware of how poorly he was.
Heres how Josh looked hours after surgery:
Later on Tuesday night, Josh took a turn for the worse. We were called back to Paediatric ICU to speak with Mr Hassan. He said that there was something wrong and he wanted to re-open Joshs chest to check for problems. As we were there Joshs blood pressure crashed and we stood by whilst the PICU staff fought to save him. This was without doubt the most terrifying thing I have ever seen. Watching your baby fight for life in front of you is an experience I never want to repeat. He eventually was stabilized and was taken down into theatre. Ged and myself were left to wonder what the outcome may be.
We spent hours walking the streets around the Freeman Hospital in Newcastle eventually at 3:00am we got the call, Josh was back from surgery and was stable. It seems that his pulmonary artery had kinked and caused back pressure in his heart, because of this his blood pressure had dropped to levels incompatible with life. I.E his blood was not getting pumped around his body. After a total of 13 hours of surgey in 24 hours, Josh was left with his chest open while he remained on life support, anaesthetized and paralysed he was to remain like this for 5 days.
I know it sounds weird, but during this time Ged and myself got to view Joshs heart, it seemed so small. Its a wonder that Mr Hassan was able to correct the defects.
On Saturday Morning they decided Josh was stable enough to have his chest closed. The procedure took about 1.5 hours.
On Sunday they started to reduce his paralysing agent and Josh started to show signs of movement, although he was still unconscious.
By Monday morning, they were reducing his sedation and Josh opened his eyes for the first time. Although still on a ventilator he seemed to be winning his fight for life. During the course of Monday they reduced his ventilation support, by that evening they told us they were going to remove the ventilator the next morning.
We arrived on Tuesday morning to see Josh free from his ventilator and slight more awake. Although he was still receiving a low sedation dose. The next day or so passed relatively uneventful.
On Thursday evening Josh was awake enough to have a feed from a bottle, the honour fell to Ged as she had been so upset during his time in PICU I was happy to take a back seat. However as Josh was moved back into his cot, his main line in his neck snapped. This resulted in a large loss of blood over Ged, Myself and the cot. Although not an emergency it was a very unsettling experience. We had to go and get cleaned up and they decided to move the IV drugs to canulas in his feet. When we got back the nurses looked very concerned. It appears that one of Joshs pacemaking wires had removed itself. In the above photos theres a thick blue wire this is the one that removed itself fortunately it was found that this wire was not the one that was pacing his heart. So he narrowly avoided another surgery.
During the course of Thursday night though, josh took another turn for the worse.
We arrived on Friday morning to find Josh back on a ventilator. He had gotten into respiratory distress through the night and an ultrasound and an X-ray had revealed a large build up of fluid around his lungs. The Doctors were discussing how best to deal with this and, with our input, it was decided to monitor him on the ventilator with fluid restrictions in place and see if his body re-absorbed the fluid. 48 hours later Joshua came back off the ventilator. He started to wake again on Sunday and by Monday when we arrived on the PICU unit, Josh was awake and alert enough to give us a smile when he saw us. This resulted in many a tear being shed by Ged and myself. The relief was immense.
On Tuesday Morning Josh was taken from PICU to the High Dependency unit on Ward 23 (childrens cardiac ward) This was a huge step for us as it meant his condition had improved a great deal. However our relief was short lived, During the course of Tuesday and Wednesday Josh was very unsettled, crying constantly, terrified of people approaching him and didnt respond to cuddles or feeding. It was decided that he was suffering withdrawal of Morphine. If anyone has seen an adult go cold turkey, its a harrowing experience. In a child its terrifying and so distressing that Ged had to leave the ward. They started Joshua on doses of Methadone and Diazepam to relieve the symptoms. It took 24 hours before he settled down. In all it took 3 attempts to ween him off Methadone. He finally came out of hospital 5 weeks after he went in.
Since August:
Josh continues to improve now, he has a rather large scar down his chest but after everything he has been through his personality is amazing. At 8 months old he continues to develop albeit slightly behind where he should be.
