After Ethans birthday things calmed down a bit, my sister came to stay (Sam) for a few days, and we had a nice chilled out time. Ethans consultant at Southend wanted to start him on imodium, as he was going through a lot of nappies and not really putting on the weight. The thought being that if we could slow down his digestive system then food might stay there a bit longer and be digested a bit better. In order to this we needed to take him off domperidone, which speeds up the digestive system and aids stomach emptying. I did this for a few days to make sure he would not have an adverse reaction to coming off domperidone, and he didnt seem to. I started imodium and just after two doses, Ethan started obvious refluxing, so I aspirating his stomach through the tube and got lots of green bile out.
I restarted domperidone and hoped that would be it. The enxt day Ethan seemed unsettled so we called the PCN nurse out to check him over. Typically he seemed fine when she got here, but a few hours later he went downhill. A 2am 999 call, where as soon as the operator asked me to tell her if he had changed colour, he did. Thankfully we have the oxygen tanks here so I could give him extra oxygen, and my bags are always packed ready to go. The paramedic car turned up first and said q2you have everything under control, I have never seen such a well prepapred Mother before". I have syringes and Sats probe in my handbag and his medical notes on hand. His colour was really bad he was so mottled and unsettled - nothing I could do would settle him.
My ex mother in law came to sit with my step daughter so Ethans dad could be with me. We had to wait what felt like hours before they put him back on the ventilator. It was strange as this was all happening in the resus room where I was first brought in when i had Ethan, and was sitting in the same waiting room his dad had to sit in waiting for news on me! The paed consultant came down from the ward and said "This is Ethan - we take no chance we need to get him to London". Xray showed upper right quadrant of right lung was collapsed which is where an aspiration event is likely to effect.
I spent the night in the waiting room of adult ITU (no PICU at local) waiting for CATS team to come. They came at around 8am and we went back to St Marys.
I was again calm, even calmer then before as I know St Marys and the staff. Ethan was ventilated again for 10 days and he had CNEP after the ventilator. He had a couple of temperature spikes but his settings were not too high an his oxygen was reasonable, though he did need Nitric oxide again for a bit. I made friends with most of the parents on the unit, and we all grouped together - watching DVD's in the parents rooms, going to lunch together and the like. It made the whole thing easier. I tried to reassure parents new to PICU that everything would be OK - I hope I helped so people.
While at St Marys it took me a while to persuade the pharmacist not to put medicines into Ethans stomach due to reflux. He had one vomit of medicines and I said firmly that I would take the risk of the medicines not being absorbed properly - as opposed to everything going straight into his lungs. And so the only medicine that went into his stomach was his Sildenafil.
As Ethan got better St Marys wanted him to have the Nissens and so spoke to Royal London and to his surgeon to get this arranged. His wonderful surgeon agreed and so we were moved to a ward at St marys awaiting transfer to royal London. Just before Ethan was moved to the ward, a consultant picked up Ethan and didnt realise that he was attached to his milk and pulled, pulling out the PEG-J that was in his intestines. A surgeon was called and he just simply pushed it back in and re x-rayed to make sure it was in the right position. That night I stayed in a hotel (I had to pay for hotel once he was on a ward) as I did not want to stay on a ward with older teenagers there also. Ethan had been quiet since this and slept for most of the day, but was doing odd twiches and raising his hands in his sleep, which was put down to withdrawal. When I got back to Ethan the next morning, his PEG had been pulled out and his milk was running. I immediately stopped his feed and got a nurse. Because of this Ethan seems to missed doses of his morphine (he is on Morphine while being on a ventilator for sedation and pain reasons and has to be weaned off slowly). I did ask that were given IV but it doesnt seem that this happened. He was transferred to Royal London and back to Grosvenor ward. I was pleased to be back again and was intending to stay with my Aunt for the first night as the sick childrens trust did not have a bed. His surgeon came to see him at 4pm and Ethan was a bit jumpy but not too bad, but he got more and more distressed. His temperature went up and he was rolling all over the cot, kicking and crying like nothing I have ever seen before. I was so worried and so was his nurse. I did not leave his side, even being given morphine was not helping. I kept saying he is bad he is going to crash (meaning he will need intubating). I wanted him to go to the PICU - but the PICU said they do not have any beds. I explained I understood that but that we needed to get him to a PICU that did have beds then. It was felt that he didnt need PICU and it was just withdrawal. Some of the doctors came to see him and said they had heard of withdrawal like that but had never seen it.
They went to give him more morphine but I said "hang on a min, morphine can repress the respiratory system can it not? If so is it safe to give him that before he is in a safe enviroment?". The ward nurse said to the doctor "I agree with Mum, I am with holding this dose until we know what is happening"
The PICU nurse came down and said she could give him the same level of care on the ward as she could in PICU.
I was not happy and said it was not fair to the other patients, and she did not have the equipment required to put him on a ventilator should he need to go on one quickly. I then put a call on to Southend, and in doing so was ablt to be moved to PICU. (I think just to pacify me). I remember the PICU nurse saying to ward nurse, we wont admit for 4 hours - in other words expecting that he would be back on a ward in a few hours.
I was found a bed in a storage area of a ward, where I slept for a few hours before being woken up by cleaners. I then was going back and forth to the PICU. The parents room at the PICU was just a sofa with a few chairs and fridge. No drink facilities no entertainment no nothing. But I managed to get a few more hours.
I was shown his xray which looked bad but then again I was prob seeing the previous aspiration. The consultant wanted to know if anyone had spoken to me about his prognois. I replied yes - that he will grow and his lungs will grow and that he needs a nissen/fundoplication. Nothing more was said but I was scared, and such state crying on the phone to Ethan's dad. I was also very very tired. Another parent heard me talking - who I had spoken to previously in the parents room, and gave in her room key of the sick childrens trust to me! I was so grateful and still am. A wonderful family, Charlotte you are a wonderful person and a wonderful Mother.
He was tried on Cpap and then he was tried on a head box which just stops the lungs from closing but does not give pressure. was really only tried as he did not tolerate the cpap. I was told that they wanted to talk about stopping treatment and we needed to talk about what was fair on Ethan. They wanted to know where to dreaw the line with treatment, whether to offer Nitric - whether to put him on the Ventilator at all. I said - if he needs it then give it to him, if it doesnt work then come back to me. My Aunt and cousin took me out to dinner on the Sunday - which I was grateful for.
On The Monday (he was admitted to Royal London on Friday) I went in and the consultant was actually someone who looked after Ethan the first time he was at St Marys.
He again said we need to know where to draw the line and I again said - if he needs it.... They said they wanted to put him on the ventilator and I agreed saying he needed that days ago. I said I would go and get a coffee and then come back, I was calm at this stage - having been there many times before. The nurse in change then said - would you wait outside as he may have an arrest and we wont bring him back. I was shocked at this!
I waited outside, and I must say Irene again was wonderful speaking and texting me - despite what grief she must have been feeling about losing Angelina. Again she was there for me, I am eternally grateful.
A|t this point his surgeon caming running up the hall, he had just heard about what had been happening. he went in to see Ethan. I was then pulled in to speak to the consultant who said she had spoken to his NICU doctors and knew about his history and his problems he has. I replied
"Ethan has chronic lung disease but has been on Oxygen and coping well. His pulmonary hypertension will resolve as he grows and as his lungs grow. His main problem is his reflux which is causing aspirations and causing breathing problems. This time his problem was caused by morphine withdrawal leading to respiratory distress. He needs a fundo and then he will grow and hopefully he will be a normal child."
The consultant said she felt that no one would operate on Ethan, but that she was sending him to Great ormond street. relief flooded me, I have no idea what she would have said If I hadnt made my speech.
The same CATS team that came to get Ethan from the Local came to get him again.
Once at GOSH we was initially in PICU but was moved to NICU to free up a bed for a larger child. Ethans dad and the children was already on the way up to see me - due to the poor state he was in at Royal London - and so came to GOSH instead.
While at GOSH he was under the same consultant that last time had spoken to me about the DNR. His response when he first saw Ethan was - well this is hardly a blip compared to last time!
I was so reassured! He actually needed really low amount of supported and was on cpap via the tube before we knew it! They kept the tube in while they discussed surgery (yes they agreed to the fundo!) options. Initially they was going to take the tube out and then wait a while for a surgery slot - which the nearest slot was 20th December! I was preparing for Christmas in london. I spoke to the Surgeon and pointed out Ethans previous aspirating events were only three weeks apart, and the agreed to the surgery in the next few days! They kept the tube all the while to avoid having to keep putting it back down, and his Fundo surgery was done on 5th December his dads birthday! His next main issue was weaning him off morphine, he was needing 27 of morphine just to be normal! Which is a massive amount! He was moved on to a ward after a few days and then I asked to go home instead of the local 5 days after surgery. He came home with a morphine and clonidine weaning program.
So he was home for his first Christmas!!!!!!!!!! It has been lovely and this New years eve having him with me was great and emotional. He is now feeding into the stomach every three hours and is putting on weight lovely. he does need more oxygen at 1.5ltrs but after all these aspiration event it is to be expected!
Onwards and upwards and hopefully infection free and we will see what happens!
He needs to have a speech and language assessment to see if he can swallow before we feed him normally. he does cough sometimes on his spit, but mainly if he been putting his hands in his mouth. I am confident (ish) that he is swalling his saliva and not aspirating from his mouth (which is what the royal london doc said could be happening).
I restarted domperidone and hoped that would be it. The enxt day Ethan seemed unsettled so we called the PCN nurse out to check him over. Typically he seemed fine when she got here, but a few hours later he went downhill. A 2am 999 call, where as soon as the operator asked me to tell her if he had changed colour, he did. Thankfully we have the oxygen tanks here so I could give him extra oxygen, and my bags are always packed ready to go. The paramedic car turned up first and said q2you have everything under control, I have never seen such a well prepapred Mother before". I have syringes and Sats probe in my handbag and his medical notes on hand. His colour was really bad he was so mottled and unsettled - nothing I could do would settle him.
My ex mother in law came to sit with my step daughter so Ethans dad could be with me. We had to wait what felt like hours before they put him back on the ventilator. It was strange as this was all happening in the resus room where I was first brought in when i had Ethan, and was sitting in the same waiting room his dad had to sit in waiting for news on me! The paed consultant came down from the ward and said "This is Ethan - we take no chance we need to get him to London". Xray showed upper right quadrant of right lung was collapsed which is where an aspiration event is likely to effect.
I spent the night in the waiting room of adult ITU (no PICU at local) waiting for CATS team to come. They came at around 8am and we went back to St Marys.
I was again calm, even calmer then before as I know St Marys and the staff. Ethan was ventilated again for 10 days and he had CNEP after the ventilator. He had a couple of temperature spikes but his settings were not too high an his oxygen was reasonable, though he did need Nitric oxide again for a bit. I made friends with most of the parents on the unit, and we all grouped together - watching DVD's in the parents rooms, going to lunch together and the like. It made the whole thing easier. I tried to reassure parents new to PICU that everything would be OK - I hope I helped so people.
While at St Marys it took me a while to persuade the pharmacist not to put medicines into Ethans stomach due to reflux. He had one vomit of medicines and I said firmly that I would take the risk of the medicines not being absorbed properly - as opposed to everything going straight into his lungs. And so the only medicine that went into his stomach was his Sildenafil.
As Ethan got better St Marys wanted him to have the Nissens and so spoke to Royal London and to his surgeon to get this arranged. His wonderful surgeon agreed and so we were moved to a ward at St marys awaiting transfer to royal London. Just before Ethan was moved to the ward, a consultant picked up Ethan and didnt realise that he was attached to his milk and pulled, pulling out the PEG-J that was in his intestines. A surgeon was called and he just simply pushed it back in and re x-rayed to make sure it was in the right position. That night I stayed in a hotel (I had to pay for hotel once he was on a ward) as I did not want to stay on a ward with older teenagers there also. Ethan had been quiet since this and slept for most of the day, but was doing odd twiches and raising his hands in his sleep, which was put down to withdrawal. When I got back to Ethan the next morning, his PEG had been pulled out and his milk was running. I immediately stopped his feed and got a nurse. Because of this Ethan seems to missed doses of his morphine (he is on Morphine while being on a ventilator for sedation and pain reasons and has to be weaned off slowly). I did ask that were given IV but it doesnt seem that this happened. He was transferred to Royal London and back to Grosvenor ward. I was pleased to be back again and was intending to stay with my Aunt for the first night as the sick childrens trust did not have a bed. His surgeon came to see him at 4pm and Ethan was a bit jumpy but not too bad, but he got more and more distressed. His temperature went up and he was rolling all over the cot, kicking and crying like nothing I have ever seen before. I was so worried and so was his nurse. I did not leave his side, even being given morphine was not helping. I kept saying he is bad he is going to crash (meaning he will need intubating). I wanted him to go to the PICU - but the PICU said they do not have any beds. I explained I understood that but that we needed to get him to a PICU that did have beds then. It was felt that he didnt need PICU and it was just withdrawal. Some of the doctors came to see him and said they had heard of withdrawal like that but had never seen it.
They went to give him more morphine but I said "hang on a min, morphine can repress the respiratory system can it not? If so is it safe to give him that before he is in a safe enviroment?". The ward nurse said to the doctor "I agree with Mum, I am with holding this dose until we know what is happening"
The PICU nurse came down and said she could give him the same level of care on the ward as she could in PICU.
I was not happy and said it was not fair to the other patients, and she did not have the equipment required to put him on a ventilator should he need to go on one quickly. I then put a call on to Southend, and in doing so was ablt to be moved to PICU. (I think just to pacify me). I remember the PICU nurse saying to ward nurse, we wont admit for 4 hours - in other words expecting that he would be back on a ward in a few hours.
I was found a bed in a storage area of a ward, where I slept for a few hours before being woken up by cleaners. I then was going back and forth to the PICU. The parents room at the PICU was just a sofa with a few chairs and fridge. No drink facilities no entertainment no nothing. But I managed to get a few more hours.
I was shown his xray which looked bad but then again I was prob seeing the previous aspiration. The consultant wanted to know if anyone had spoken to me about his prognois. I replied yes - that he will grow and his lungs will grow and that he needs a nissen/fundoplication. Nothing more was said but I was scared, and such state crying on the phone to Ethan's dad. I was also very very tired. Another parent heard me talking - who I had spoken to previously in the parents room, and gave in her room key of the sick childrens trust to me! I was so grateful and still am. A wonderful family, Charlotte you are a wonderful person and a wonderful Mother.
He was tried on Cpap and then he was tried on a head box which just stops the lungs from closing but does not give pressure. was really only tried as he did not tolerate the cpap. I was told that they wanted to talk about stopping treatment and we needed to talk about what was fair on Ethan. They wanted to know where to dreaw the line with treatment, whether to offer Nitric - whether to put him on the Ventilator at all. I said - if he needs it then give it to him, if it doesnt work then come back to me. My Aunt and cousin took me out to dinner on the Sunday - which I was grateful for.
On The Monday (he was admitted to Royal London on Friday) I went in and the consultant was actually someone who looked after Ethan the first time he was at St Marys.
He again said we need to know where to draw the line and I again said - if he needs it.... They said they wanted to put him on the ventilator and I agreed saying he needed that days ago. I said I would go and get a coffee and then come back, I was calm at this stage - having been there many times before. The nurse in change then said - would you wait outside as he may have an arrest and we wont bring him back. I was shocked at this!
I waited outside, and I must say Irene again was wonderful speaking and texting me - despite what grief she must have been feeling about losing Angelina. Again she was there for me, I am eternally grateful.
A|t this point his surgeon caming running up the hall, he had just heard about what had been happening. he went in to see Ethan. I was then pulled in to speak to the consultant who said she had spoken to his NICU doctors and knew about his history and his problems he has. I replied
"Ethan has chronic lung disease but has been on Oxygen and coping well. His pulmonary hypertension will resolve as he grows and as his lungs grow. His main problem is his reflux which is causing aspirations and causing breathing problems. This time his problem was caused by morphine withdrawal leading to respiratory distress. He needs a fundo and then he will grow and hopefully he will be a normal child."
The consultant said she felt that no one would operate on Ethan, but that she was sending him to Great ormond street. relief flooded me, I have no idea what she would have said If I hadnt made my speech.
The same CATS team that came to get Ethan from the Local came to get him again.
Once at GOSH we was initially in PICU but was moved to NICU to free up a bed for a larger child. Ethans dad and the children was already on the way up to see me - due to the poor state he was in at Royal London - and so came to GOSH instead.
While at GOSH he was under the same consultant that last time had spoken to me about the DNR. His response when he first saw Ethan was - well this is hardly a blip compared to last time!
I was so reassured! He actually needed really low amount of supported and was on cpap via the tube before we knew it! They kept the tube in while they discussed surgery (yes they agreed to the fundo!) options. Initially they was going to take the tube out and then wait a while for a surgery slot - which the nearest slot was 20th December! I was preparing for Christmas in london. I spoke to the Surgeon and pointed out Ethans previous aspirating events were only three weeks apart, and the agreed to the surgery in the next few days! They kept the tube all the while to avoid having to keep putting it back down, and his Fundo surgery was done on 5th December his dads birthday! His next main issue was weaning him off morphine, he was needing 27 of morphine just to be normal! Which is a massive amount! He was moved on to a ward after a few days and then I asked to go home instead of the local 5 days after surgery. He came home with a morphine and clonidine weaning program.
So he was home for his first Christmas!!!!!!!!!! It has been lovely and this New years eve having him with me was great and emotional. He is now feeding into the stomach every three hours and is putting on weight lovely. he does need more oxygen at 1.5ltrs but after all these aspiration event it is to be expected!
Onwards and upwards and hopefully infection free and we will see what happens!
He needs to have a speech and language assessment to see if he can swallow before we feed him normally. he does cough sometimes on his spit, but mainly if he been putting his hands in his mouth. I am confident (ish) that he is swalling his saliva and not aspirating from his mouth (which is what the royal london doc said could be happening).