We were taken to GOSH by Ethan's adopted grandmother, my elder sons Grandmother. She has been such a great support of all of us throughout everything.
As soon as we got there I felt sick. We walked into the building and onto the 4th floor where all of the intensive care units are. Through the glass tunnel we nicknamed "the tomato growing bit" (which was always boiling hot and did not help the nausea) and then turned right to go into the NICU. Though Ethan was no longer "premature", because of his size and due to the lack of beds in the PICU (pediatric Intensive Care Unit) that is where he was. He was given his own room again, mainly due to MRSA rules and infection control. Once again we were faced with lots of machines and the beep beep noises. It just seemed even worse then we had ever seen it before. Whether it was because he was in his own room with all the machines, or whether it was because this time round we had got to know Ethan, he had "woken up" and become a proper little baby, if that makes any sense at all, It just made it all ten times more intense then when he was first born.
There was Ethan, in his plastic "cot", once again ventilated and sedated and worse still - paralyzed. The ventilator setting were still high and his oxygen was 100%. Nobody had to tell me how bad it was, I already knew. The nurse explained they had had trouble changing Ethan from the CATS teams ventilator to theirs over night but they had got him settled. We were given accomodation by GOSH. We were allocated the Italian wing, just to the right and over the road from GOSH, across the square.
The Italian wing is much like a hotel, with maids cleaning your room every day etc but with really bad beds and no TV reception! Not that we minded - we were very grateful for the room that was ensuite and free. (we did end up having to buy cheap duvets so that we could use them to lay on as the beds were really bad!). It was also very hot and the sunlight came through the windows every morning, waking us up at 6.30am. Not pleased when you just to sleep at 3am however we used extra sheets and covered the windows with them!
The first meeting with the doctors was not a good one, in fact most of the conversations with the doctors there were horrible.
Ethans lungs were very very bad and had a lot of fluid on them, they had checked his heart and they thought he may have pulmonary hypertension and so had started him on nitric oxide as a treatment. (He was later moved on to sildenafil to wean him off the Nitric which is also know as Viagra!) We would not know more until the consultants meeting the next day. (Pulmonary Hypertension is when there is a narrowing of the blood vessels from the heart to the lungs, causing problems with the lungs receiving oxygen)
The very next day and yet more meetings. Now the doctors did not think Ethan had pulmonary hypertension but yet he was responding to the treatment like he did have it. They were extremley worried about him as his lungs were (are) very scarred, and the amount of pressure they were needing to use to ventilator meant that though they were opening up the scarred bits, the good bits were getting damaged. His oxygen was still 100% and his oxygen saturation levels in blood were at 80% at best. We was told at current rate Ethans body could not sustain that level of saturation for long before his organs would give up. They believed he had 48 hours at most to live before this happened.
Thankfully it never did.
We had three phone calls, one at midnight where Ethans SATS dropped so low and they took a long time to go back up. At one point they turned off the paralysing drug and I was chatting to the wonderful nurses when I turned around and there was looking at me. I was so pleased, I went out the room to call BF to tell him to come and see, and when we got back in there all hell was breaking loose - again. Another one of "them" moments, he was just trying to fight the ventilator. Ethans Father refused to go back to see him after that as he was too stressed with all the ups and downs.
The doctors tried lots of things included the ocillator ventilator but true to form Ethan did not like it.. It was one of " those moments" when they tried him on ocillator. They called us at midnight to say he was not responding to the normal ventilator and the only option was the ocillator. I explained that Ethan had been tried on it before and he really did like it but was told that was the only option. We waited in the waiting room while they moved him onto the new ventilator, to be told he did not respond well at all to the new one and so they moved him back. I was so so scared at this point, but after a few hours and he did not get any worse, or better I thought sleep was the best option for the time being. (He was put on this when he was born and reacted in the same manor). However Ethan held on even when his SATs dropped to 20% for 1 1/2 hours. I was in the room when that happened and the doctor looked at me said "I think I can get him out of this one, but if it happens again then Ethan will be dying - do you understand?". I said I understood, I could not move from my seat and could just look at the floor. They asked if I wanted to leave the room and I said no. In truth my legs were fixed to the floor even if I wanted to go I couldnt. I knew what ever I had to be there. What could I do but hope? The doctors did not know what had actually caused his collapse, maybe infection, maybe aspirations and maybe the injections he had just tipped him over the edge. Of course it could just be that his lungs were that bad that they were slowly closing.
I stayed a while - all the time them bagging my baby (putting a mask over him connected to a ballon type thing that the press to inflate his lungs manually), it was not the first time during my stay that I saw that - then went back to my room. I called the nurse and asked if anything was to happen I wanted to be there and to call me as soon as possible. I told her I would not let him "go" alone, I would hold him, and I would be there with him. I asked what would happen and she said she would take all the machines off him, and place him in my arms. That it would take some time as his heart was strong but then he would "go".
That was the worst conversation of my life. Ever. It was horrible having to tell people about these conversations with most people not knowing what to say (as I would be I guess). Thank you again Irene for supporting me and having confidence in Ethan.
Then just like Ethan he settled himself. Again.
Just as soon as it felt like we were making progress, then he would have another set back. One week the average his SATs were was 60%.
Another meeting.
This one was with a neurologist as well as the general consultant. They wanted to know what Ethan was like before the collapse so they could determine the ethical views on his treament. In other words how much did the grade III IVH effect him. I showed the the play diary Southend had made him, which described Ethan hitting milestones etc and that was all that was needed.
Another conversation of "Ethans lungs are very very bad" and then the conversation of, "If Ethan drops his SATS again we do not think it is right to continue care. Ethan would surely be heavily brain damaged and if he was to drop again it would be his way of saying his lungs could no longer sustain him. Therefore we would like you to agree to a dont not resuscitate order" I agreed. I explained I felt that it would be Ethans way of saying he had had enough if that was happen.
The next day we had the same conversation with S to go over the grey area of the conversation, it was decided if Ethan was to drop his SATS because the nurse had moved him then they will intervene. Otherwise they would just stand and do nothing.
A few days later and his ventilator settings had improved. I had another meeting with the same doctor and asked when would the change their mind about the DNR. He explained if his vent setting came down to ... (19 on 8) which it was UNLIKELY to happen, but if it did by say the end of the next week then we would have a very different conversation. I think Ethan was listening as that evening his pressures did go down - and the DNR was lifted the next day.
Things improved! He was woken up and though still on a lot of drugs and so not very aware, he was awake! It felt so good to see his eyes! He was very floppy though and did not seem to be moving his limbs. He would move his hands and that was all.
At this point he also started to become jittery (which actually he was like before GOSH) and so they thought he was having seizure and so was put on to anti seizure medications. This scared me some more as we had already been told it was very unlikely that he did not have more brain damage due to the lack of oxygen, and with each seizure (which was described as lasting about 20 mins) I thought it was more likely that he would have brain damage.
Then the best news, he had his MRI (and EEG's for the seizures) and the MRI showed NO FURTHER DAMAGE! How is that even possible! Plus it showed no indication of seizures and neither did the EEG's (they did 3 in total). Happy was not the word, I was prepared for the worst and had accepted the worst. Even his nurse was so suprised!
The kids came up to see us and we spent some time in the British museum and Coram fields. By then we had moved to The Sick Childrens Trust House in Guildford street which is round the corner from GOSH but not too close. It was so good to see the kids, it was more then good it was great!
Initally we did have "the" conversation with them about what could happen as when they first came to see us, things were rocky to say the least. Tears were shed ofcourse. Then as he got better and better I took them to see Ethan, I wanted them to see him awake and not "asleep".
All of sudden I got a phone call in the morning from Ethans nurse to let me know they were extubating him that morning! I was so happy. He had to go onto CPAP again at first, which he hated. He was still floppy though, which made me think the doctors had got the MRI wrong. (I was later told he just needed to get his muscle strength back as childrens muscles waste away quicker then adults).
He was back on the "Elephant" CPAP with the big tubes but he would not keep his mouth closed so they had to move him on to the mask or else re-ventilate him.
He hated CPAP via the nasal prongs or the mask. He cried the whole time and had to be sedated, it broke my heart. I begged the doctor on day 3 to try him without, just for 10 mins, my theory being if he could complain that loud about it, did he need it?! The doctor refused, but the very next day the nurse did it any way as I spent a lot of time taking the mask off any way to "clean his face".
Instantly he was happier and he was tolerating it better the the CPAP. Mothers are always right arent we! ;)
After 48 hours off CPAP Ethan was moved onto the 5th floor and onto a ward, again in his own room!
We were moved to Badger ward, and it was so good to leave the NICU though scary as it would no longer be one to one nursing! I must say the nurses at GOSH NICU are fantastic and really lovely people.
It was felt that maybe aspirations were the cause of Ethans collapse, either orally through the bottles that we were giving, or via reflux from his stomach and into his lungs or both. He was sent for a PH study we means he had a tube passed into his stomach which had a probe on the end, to take readings of the acid over a 24 hour period. This would tell if he had severe reflux. He also had a upper GI study done when they poured a solution down his tube that would show up on xray to see if there was any problems from the mouth down. This could also show reflux.
He was being fed at this time with a tube that went passed his stomach and into his small bowel (Or jejunum - this tube is a called a NJ and a NG is a tube that goes to the stomach). He was back on to continous feeds via the NJ (he had spent weeks previously on just fluids).
The upper GI showed everything was great and no reflux could be seen. He had a SALT (Speech and language assesment) before we left but as Ethan was on contionous feeds there was not too much to assess but they felt Ethan would be Ok to try the bottle once he was on 2 hourly feeds. The Dietician at GOSH also recommended trying Ethan on some baby rice, just on his lips to start with to see if we could start weaning.
Ethans muscles was getting stronger again and he was starting to move him arms and legs a lot more!
It was felt that Ethan could be sent back to local (Southend) before the results of the PH were back. If the results were positive then Ethan would most likely need a operation to tighten the muscle above the stomach to prevent the feed from coming back up. It was also mentioned that he made need a "peg" direct into his stomach to bypass using a NG tube and just feed direct into the stomach.
But first - back home we go!!!
Packing up was mad, I had so much stuff to take back with me! Thankfully it all went with us in the ambulance.
As soon as we got there I felt sick. We walked into the building and onto the 4th floor where all of the intensive care units are. Through the glass tunnel we nicknamed "the tomato growing bit" (which was always boiling hot and did not help the nausea) and then turned right to go into the NICU. Though Ethan was no longer "premature", because of his size and due to the lack of beds in the PICU (pediatric Intensive Care Unit) that is where he was. He was given his own room again, mainly due to MRSA rules and infection control. Once again we were faced with lots of machines and the beep beep noises. It just seemed even worse then we had ever seen it before. Whether it was because he was in his own room with all the machines, or whether it was because this time round we had got to know Ethan, he had "woken up" and become a proper little baby, if that makes any sense at all, It just made it all ten times more intense then when he was first born.
There was Ethan, in his plastic "cot", once again ventilated and sedated and worse still - paralyzed. The ventilator setting were still high and his oxygen was 100%. Nobody had to tell me how bad it was, I already knew. The nurse explained they had had trouble changing Ethan from the CATS teams ventilator to theirs over night but they had got him settled. We were given accomodation by GOSH. We were allocated the Italian wing, just to the right and over the road from GOSH, across the square.
The Italian wing is much like a hotel, with maids cleaning your room every day etc but with really bad beds and no TV reception! Not that we minded - we were very grateful for the room that was ensuite and free. (we did end up having to buy cheap duvets so that we could use them to lay on as the beds were really bad!). It was also very hot and the sunlight came through the windows every morning, waking us up at 6.30am. Not pleased when you just to sleep at 3am however we used extra sheets and covered the windows with them!
The first meeting with the doctors was not a good one, in fact most of the conversations with the doctors there were horrible.
Ethans lungs were very very bad and had a lot of fluid on them, they had checked his heart and they thought he may have pulmonary hypertension and so had started him on nitric oxide as a treatment. (He was later moved on to sildenafil to wean him off the Nitric which is also know as Viagra!) We would not know more until the consultants meeting the next day. (Pulmonary Hypertension is when there is a narrowing of the blood vessels from the heart to the lungs, causing problems with the lungs receiving oxygen)
The very next day and yet more meetings. Now the doctors did not think Ethan had pulmonary hypertension but yet he was responding to the treatment like he did have it. They were extremley worried about him as his lungs were (are) very scarred, and the amount of pressure they were needing to use to ventilator meant that though they were opening up the scarred bits, the good bits were getting damaged. His oxygen was still 100% and his oxygen saturation levels in blood were at 80% at best. We was told at current rate Ethans body could not sustain that level of saturation for long before his organs would give up. They believed he had 48 hours at most to live before this happened.
Thankfully it never did.
We had three phone calls, one at midnight where Ethans SATS dropped so low and they took a long time to go back up. At one point they turned off the paralysing drug and I was chatting to the wonderful nurses when I turned around and there was looking at me. I was so pleased, I went out the room to call BF to tell him to come and see, and when we got back in there all hell was breaking loose - again. Another one of "them" moments, he was just trying to fight the ventilator. Ethans Father refused to go back to see him after that as he was too stressed with all the ups and downs.
The doctors tried lots of things included the ocillator ventilator but true to form Ethan did not like it.. It was one of " those moments" when they tried him on ocillator. They called us at midnight to say he was not responding to the normal ventilator and the only option was the ocillator. I explained that Ethan had been tried on it before and he really did like it but was told that was the only option. We waited in the waiting room while they moved him onto the new ventilator, to be told he did not respond well at all to the new one and so they moved him back. I was so so scared at this point, but after a few hours and he did not get any worse, or better I thought sleep was the best option for the time being. (He was put on this when he was born and reacted in the same manor). However Ethan held on even when his SATs dropped to 20% for 1 1/2 hours. I was in the room when that happened and the doctor looked at me said "I think I can get him out of this one, but if it happens again then Ethan will be dying - do you understand?". I said I understood, I could not move from my seat and could just look at the floor. They asked if I wanted to leave the room and I said no. In truth my legs were fixed to the floor even if I wanted to go I couldnt. I knew what ever I had to be there. What could I do but hope? The doctors did not know what had actually caused his collapse, maybe infection, maybe aspirations and maybe the injections he had just tipped him over the edge. Of course it could just be that his lungs were that bad that they were slowly closing.
I stayed a while - all the time them bagging my baby (putting a mask over him connected to a ballon type thing that the press to inflate his lungs manually), it was not the first time during my stay that I saw that - then went back to my room. I called the nurse and asked if anything was to happen I wanted to be there and to call me as soon as possible. I told her I would not let him "go" alone, I would hold him, and I would be there with him. I asked what would happen and she said she would take all the machines off him, and place him in my arms. That it would take some time as his heart was strong but then he would "go".
That was the worst conversation of my life. Ever. It was horrible having to tell people about these conversations with most people not knowing what to say (as I would be I guess). Thank you again Irene for supporting me and having confidence in Ethan.
Then just like Ethan he settled himself. Again.
Just as soon as it felt like we were making progress, then he would have another set back. One week the average his SATs were was 60%.
Another meeting.
This one was with a neurologist as well as the general consultant. They wanted to know what Ethan was like before the collapse so they could determine the ethical views on his treament. In other words how much did the grade III IVH effect him. I showed the the play diary Southend had made him, which described Ethan hitting milestones etc and that was all that was needed.
Another conversation of "Ethans lungs are very very bad" and then the conversation of, "If Ethan drops his SATS again we do not think it is right to continue care. Ethan would surely be heavily brain damaged and if he was to drop again it would be his way of saying his lungs could no longer sustain him. Therefore we would like you to agree to a dont not resuscitate order" I agreed. I explained I felt that it would be Ethans way of saying he had had enough if that was happen.
The next day we had the same conversation with S to go over the grey area of the conversation, it was decided if Ethan was to drop his SATS because the nurse had moved him then they will intervene. Otherwise they would just stand and do nothing.
A few days later and his ventilator settings had improved. I had another meeting with the same doctor and asked when would the change their mind about the DNR. He explained if his vent setting came down to ... (19 on 8) which it was UNLIKELY to happen, but if it did by say the end of the next week then we would have a very different conversation. I think Ethan was listening as that evening his pressures did go down - and the DNR was lifted the next day.
Things improved! He was woken up and though still on a lot of drugs and so not very aware, he was awake! It felt so good to see his eyes! He was very floppy though and did not seem to be moving his limbs. He would move his hands and that was all.
At this point he also started to become jittery (which actually he was like before GOSH) and so they thought he was having seizure and so was put on to anti seizure medications. This scared me some more as we had already been told it was very unlikely that he did not have more brain damage due to the lack of oxygen, and with each seizure (which was described as lasting about 20 mins) I thought it was more likely that he would have brain damage.
Then the best news, he had his MRI (and EEG's for the seizures) and the MRI showed NO FURTHER DAMAGE! How is that even possible! Plus it showed no indication of seizures and neither did the EEG's (they did 3 in total). Happy was not the word, I was prepared for the worst and had accepted the worst. Even his nurse was so suprised!
The kids came up to see us and we spent some time in the British museum and Coram fields. By then we had moved to The Sick Childrens Trust House in Guildford street which is round the corner from GOSH but not too close. It was so good to see the kids, it was more then good it was great!
Initally we did have "the" conversation with them about what could happen as when they first came to see us, things were rocky to say the least. Tears were shed ofcourse. Then as he got better and better I took them to see Ethan, I wanted them to see him awake and not "asleep".
All of sudden I got a phone call in the morning from Ethans nurse to let me know they were extubating him that morning! I was so happy. He had to go onto CPAP again at first, which he hated. He was still floppy though, which made me think the doctors had got the MRI wrong. (I was later told he just needed to get his muscle strength back as childrens muscles waste away quicker then adults).
He was back on the "Elephant" CPAP with the big tubes but he would not keep his mouth closed so they had to move him on to the mask or else re-ventilate him.
He hated CPAP via the nasal prongs or the mask. He cried the whole time and had to be sedated, it broke my heart. I begged the doctor on day 3 to try him without, just for 10 mins, my theory being if he could complain that loud about it, did he need it?! The doctor refused, but the very next day the nurse did it any way as I spent a lot of time taking the mask off any way to "clean his face".
Instantly he was happier and he was tolerating it better the the CPAP. Mothers are always right arent we! ;)
After 48 hours off CPAP Ethan was moved onto the 5th floor and onto a ward, again in his own room!
We were moved to Badger ward, and it was so good to leave the NICU though scary as it would no longer be one to one nursing! I must say the nurses at GOSH NICU are fantastic and really lovely people.
It was felt that maybe aspirations were the cause of Ethans collapse, either orally through the bottles that we were giving, or via reflux from his stomach and into his lungs or both. He was sent for a PH study we means he had a tube passed into his stomach which had a probe on the end, to take readings of the acid over a 24 hour period. This would tell if he had severe reflux. He also had a upper GI study done when they poured a solution down his tube that would show up on xray to see if there was any problems from the mouth down. This could also show reflux.
He was being fed at this time with a tube that went passed his stomach and into his small bowel (Or jejunum - this tube is a called a NJ and a NG is a tube that goes to the stomach). He was back on to continous feeds via the NJ (he had spent weeks previously on just fluids).
The upper GI showed everything was great and no reflux could be seen. He had a SALT (Speech and language assesment) before we left but as Ethan was on contionous feeds there was not too much to assess but they felt Ethan would be Ok to try the bottle once he was on 2 hourly feeds. The Dietician at GOSH also recommended trying Ethan on some baby rice, just on his lips to start with to see if we could start weaning.
Ethans muscles was getting stronger again and he was starting to move him arms and legs a lot more!
It was felt that Ethan could be sent back to local (Southend) before the results of the PH were back. If the results were positive then Ethan would most likely need a operation to tighten the muscle above the stomach to prevent the feed from coming back up. It was also mentioned that he made need a "peg" direct into his stomach to bypass using a NG tube and just feed direct into the stomach.
But first - back home we go!!!
Packing up was mad, I had so much stuff to take back with me! Thankfully it all went with us in the ambulance.
Ethan in the NICU
Ethan in his room at GOSH