I arrived this morning expecting to see Benjamin looking rough but when I got there they had stabilised him and he looked lovely. He was awake and seemed pleased to see me as his blood pressure was quite high and heart rate quite fast until I started talking to him and it all went to normal happy numbers. In one way I love seeing his monitor as we can really see how happy he is and how settled he is with different people.
Becca and Lizzy a student nurse looked after him today and they were very watchful.
When I visited him this evening he was flat out comfy, arms up by his face and chewing his bottom lip. A very happy settled little monkey.
His Hickman line procedure is cancelled tomorrow due to having a bug grown in his cultures so they will wait til Saturday.
Benjamin Day 1
Thursday, 7 April 2011
Phone goes at 06.00 and Dread sets in ........... 7 April 2011
Kerry calls me at 06.00 to tell me Benjamin has had a little blip! He became unsettled and went a grey colour. They manage to find the cause and it was that his central line which is in is groin and runs through a central vein was leaking!!!! His Milrenone ( heart medication) Fentynl ( sedation Medication) and his Frusomide ( diuretic) were all on the line so he wasn't getting anything for what ever time. These Inatropes ( medicines or drugs , what ever you want to call them) are all on and need to be weaning very slowly. They definitely can not be turned off just like that.
So they gave him a new Inatrop called Dobutamin due to his colour and hope to get that back off today. They have gone up on his Fentynl and paralysed him again. The paralysis wont last long but its a side ways step we could do with out and it all adds pressure to Benjamin's body. His ventilation had to go up too so they need to wean that too again.
Luckily Kerry was on and she is always on the ball.
When I called back at 07.20 Benjamin was doing better and his blood pressure and heart rate were better. Cant wait to see him now, just to check myself.
So they gave him a new Inatrop called Dobutamin due to his colour and hope to get that back off today. They have gone up on his Fentynl and paralysed him again. The paralysis wont last long but its a side ways step we could do with out and it all adds pressure to Benjamin's body. His ventilation had to go up too so they need to wean that too again.
Luckily Kerry was on and she is always on the ball.
When I called back at 07.20 Benjamin was doing better and his blood pressure and heart rate were better. Cant wait to see him now, just to check myself.
Wednesday, 6 April 2011
Big meeting with steven and Rob 6th april 2011
We have a meeting planned today to meet with Rob Martin and Stephen Marriage, Benjamins Core Consultants. Its later on the day so we are able to spend some time with the little wiggler and do his cares. After administering his enoxaparin and other meds, giving him a wash and changing his botty, Its cuddle time. Benjamin is really into the mirrored disco ball by his head so I make sure he can see it and watch it spin. Today is a good day so far!
We meet with Rob and Stephen and Zowie , our nurse for the day.It was a very interesting meeting as we found out that Benjamin still has a long way to go and they will not be letting him home until he is extremely stable. Rob said that Benjamin has been and is still a very complex baby and he never dealt with a baby with his level of difficulties, with such a complex valve problem or such a determined little boy. That was very scary to hear but very good to hear as it just proves how serious they take the situation and how much they are putting into his care.Stephen says sometimes it hard not to believe Benjamin is indestructable but we need to be aware he is deliacte and the sedation and ventalation issues are just part of what he has to overcome.
We asked about the CT scan he had last week and we found out there may be an issue with his brain. He may have Brain atrophy, not apnea as I mentioned earlier in my blog.
Benjamin has fluid surrounding his brain as his brain is quite small compared to a normal brain and the question has been raised if he was born that way. There is no way of knowing that at this stage and they will have to review it as he gets better. Me and Dave can deal with learning difficulties so its not a major issue but as always I'm sure there is more to it than that.
It was really nice knowing that they have noticed how we have been dealing with things and that they thanked us for being so patient and so seemingly calm about it all. That made me laugh, If only he knew I've had murerdous thoughts at times. Luckily never towards the doctors or nurses, just generally to stupid bus drivers or rude students who knock you to the ground so they can get the last tin of beans in the local shop lol
So we carry on knowing we will be here for 3 months maybe more. We will adapt and change and deal with the situation knowing that we are closer to taking him home and that we will be a proper family soon.
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| More Belly time but tryimg to escape his bed |
We asked about the CT scan he had last week and we found out there may be an issue with his brain. He may have Brain atrophy, not apnea as I mentioned earlier in my blog.
Benjamin has fluid surrounding his brain as his brain is quite small compared to a normal brain and the question has been raised if he was born that way. There is no way of knowing that at this stage and they will have to review it as he gets better. Me and Dave can deal with learning difficulties so its not a major issue but as always I'm sure there is more to it than that.
It was really nice knowing that they have noticed how we have been dealing with things and that they thanked us for being so patient and so seemingly calm about it all. That made me laugh, If only he knew I've had murerdous thoughts at times. Luckily never towards the doctors or nurses, just generally to stupid bus drivers or rude students who knock you to the ground so they can get the last tin of beans in the local shop lol
So we carry on knowing we will be here for 3 months maybe more. We will adapt and change and deal with the situation knowing that we are closer to taking him home and that we will be a proper family soon.
Tuesday, 5 April 2011
Getting Better and showing Improvents 5 April 2011
Kerry is back today. Its her first day back since starting on the Out reach team and its good to see her. We had a catch up and an update and I am now doing Benjamins enoxaparin Injections again. It feels good to be able to wash and dress him and do his cares and meds. Benjamin still has an on off temperature so clothes don't stay on him too long but he looks cute for the time he does wear them.
Life is getting more confused than ever and harder and the Liaison nurses have been chatting with me and have organised a meeting with Benjamin's consultant so we can have an update of his progress in medical terms.
These times don't seem so bad when I see him moving, interacting and even smiling and I Hope that people reading this don't just cry , they smile too and read the hope we do have. I'm aware that many more people are reading this that I first thought and are crying a lot but that wasn't my intention. This is a sad a story but its also a story of courage, strength and amazing people. Benjamin is a strong boy and the nursing staff are clever, amazing and determined and my family and friends are a source of strength to me and Dave.
I caught Benjamin smiling the other day and it makes me so happy.
Thank you everyone xxxx
Life is getting more confused than ever and harder and the Liaison nurses have been chatting with me and have organised a meeting with Benjamin's consultant so we can have an update of his progress in medical terms.
These times don't seem so bad when I see him moving, interacting and even smiling and I Hope that people reading this don't just cry , they smile too and read the hope we do have. I'm aware that many more people are reading this that I first thought and are crying a lot but that wasn't my intention. This is a sad a story but its also a story of courage, strength and amazing people. Benjamin is a strong boy and the nursing staff are clever, amazing and determined and my family and friends are a source of strength to me and Dave.
I caught Benjamin smiling the other day and it makes me so happy.
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| HAPPY CHAPPY ! |
Mothers Day 3rd April 2011
I got a cuddle today and it was great. It filled me with the biggest happy moment I have had in weeks.
We had been in Bridgwater since Saturday sorting the house and spending time with Justice and my parents. Saturday was a full on clean and tidy day followed by a lovely meal at moms. It was very strange to be home and to sleep in my actual bed. I have to admit I miss it even being surrounded by boxes and mess. Benjamin is doing well, just a few temperature rises but Liz is there so I know he is ok. If anything happened she would be on the phone straight away.
Sunday was a different kettle of fish. I cried all day, or at least tried to push them back. Its been so long and I feel so alone at times that being home and surrounded by my family proved too emotional. Had a good chat with my mom and spent time with Justice. He bought me a lovely card and some very tasty chocolates out of his own money. He is so grown up and so tall.
After another fantastic tea and a nip out to the shops for some normality, we came back to Bristol. We went straight to Benjamin and he was having la ovely time. HE was wide awake and fascinated by the disco ball by his bed. By his bed was a card and a little glass bottle with some flowers. His nurse , Zowie , had gone out and picked the flowers and wrote the card. The card was beautiful and had a little green foot print in it. Under the card was a sheet of little green foot prints and Benjamin had green toes lol. How I kept the tears back I don't know but It finished my day off. I had presents and cards off both my boys and mothers day was great.
We had been in Bridgwater since Saturday sorting the house and spending time with Justice and my parents. Saturday was a full on clean and tidy day followed by a lovely meal at moms. It was very strange to be home and to sleep in my actual bed. I have to admit I miss it even being surrounded by boxes and mess. Benjamin is doing well, just a few temperature rises but Liz is there so I know he is ok. If anything happened she would be on the phone straight away.
Sunday was a different kettle of fish. I cried all day, or at least tried to push them back. Its been so long and I feel so alone at times that being home and surrounded by my family proved too emotional. Had a good chat with my mom and spent time with Justice. He bought me a lovely card and some very tasty chocolates out of his own money. He is so grown up and so tall.
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| Loves it on his belly |
31st March 2011- So many issues to think about
Martin is watching Benjamin today and read him the entire book of green eggs and ham. It was so great as he did voices and even more great was Benjamin's heart rate lowered so he obviously liked it.
We have several issues to ask about:
Benjamin's needs alot of physio as his upper left lobe is sticky and compressed. The problem areas keep swapping from left to right day by day.
He will need a Hickman line as his lines are end of days and he will be on his sedation for some time yet as well as his heart medication. We just have to wait til they have a slot for him.
When children are in ICU for a long time they can develop Brain apnea which is when the brain stops working as it would normally and development can become stunted. It is reversible and wont stop him doing normal things once we are able to interact with him and he starts to show interest. Its a scary thing but playing with Benjamin isn't going to be a chore. There are plenty of people around him to keep him entertained.
That night we spent half an hour with Benjamin. He was awake and happy and his numbers were good and we were not expecting that as after the two calls we had through the day we expected him to be unsettled and an awful color. It was a relief.
Benjamin spiked a temperature and has had to keep going to his antibiotics.
His Monogen milk is going up 1ml every 6 hours as they are worried that his lungs wouldn't be able to maintain to much of a upheaval. He still has his chest drain in so any excess fluid could get out but it would still put pressure on his body.
We have several issues to ask about:
- Stiff lungs from echmo and issues with Ventilation
- Delicate heart and the lack of reserve. How is his heart function?
- Addiction/Need for sedation and how we are going to deal with it
Benjamin's needs alot of physio as his upper left lobe is sticky and compressed. The problem areas keep swapping from left to right day by day.
He will need a Hickman line as his lines are end of days and he will be on his sedation for some time yet as well as his heart medication. We just have to wait til they have a slot for him.
When children are in ICU for a long time they can develop Brain apnea which is when the brain stops working as it would normally and development can become stunted. It is reversible and wont stop him doing normal things once we are able to interact with him and he starts to show interest. Its a scary thing but playing with Benjamin isn't going to be a chore. There are plenty of people around him to keep him entertained.
That night we spent half an hour with Benjamin. He was awake and happy and his numbers were good and we were not expecting that as after the two calls we had through the day we expected him to be unsettled and an awful color. It was a relief.
Benjamin spiked a temperature and has had to keep going to his antibiotics.
His Monogen milk is going up 1ml every 6 hours as they are worried that his lungs wouldn't be able to maintain to much of a upheaval. He still has his chest drain in so any excess fluid could get out but it would still put pressure on his body.
30th March 2011
Benjamin had two episodes related to the ventilator and positioning as well as secretions. He went grey and his heart rate and blood pressure dropped. It didn't last long but was upsetting as we had to go to Bridgwater to sort out the rent and new house details. Andy was having him again today so we know he will be watched carefully and it really does help when he has a nurse a few days on the trot.
When we got into the estate agents there was confusion as they all of a sudden wanted £275.00 off us . Me and Dave looked at each other and both said "what for?" So when she said oh that's standard admin fees we were less than pleased. After i explained with a slightly raised voice that I had already asked about that a week ago and that we couldn't afford that as well as finding the Deposit money before we need to move. The woman mumbled something about telling us and shuffled in her seat. I'm sure she could tell I was fighting back the urge to smash her face in the desk several times !!!1 Anyway all sorted and they called us back 2 hours later to say that could drop it to £150.00 now to do "us a favour" lol my word what a day we had had and it was only 15.00 pm.
When we got into the estate agents there was confusion as they all of a sudden wanted £275.00 off us . Me and Dave looked at each other and both said "what for?" So when she said oh that's standard admin fees we were less than pleased. After i explained with a slightly raised voice that I had already asked about that a week ago and that we couldn't afford that as well as finding the Deposit money before we need to move. The woman mumbled something about telling us and shuffled in her seat. I'm sure she could tell I was fighting back the urge to smash her face in the desk several times !!!1 Anyway all sorted and they called us back 2 hours later to say that could drop it to £150.00 now to do "us a favour" lol my word what a day we had had and it was only 15.00 pm.
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