Benjamin has his Trachosotomy 21st April 2011

Benjamin now has his trachy. It was quite a quick operation and isn't too scary to look at. And the most amazing thing is we can see his beautiful face. He is the most gorgeous thing I have ever seen, bar Justice of course. 
The trachy is " fixed" for a week. It is stitched in place with Long stitches that are used to keep the entry site open if the trachy does fall out. The long stitches are taped down to his chest with the words DO NOT REMOVE wrote on them. I really hope they didn't write that on when the tape was on his body or he may be tattooed for some time with those words.
The surgeons will change his trachey the first time round and then Me and Dave will learn how to do it. We will have to learn how to suction his secretions , snot and spit!, and how to perform an emergency change .

With all the worries to one side, we finally have our little boy on a steady long term breathing plan which will hopefully help him grow. His monogen milk should be changed soon so he can go on a high calorie feed and we can see his smiles and all his expressions.
No doubt I will add more about his trachy but I wanted to share the news and the pictures with everyone xx

Hours after his operation, sleepy but beautiful

Chilling in his chair, He was awake but obviosly got comfy

Trachesostomy and Problem solving 20th April 2011

After Benjamin was so poorly we decided we needed a new plan so had a meeting with Rob martain and Peter Davis. The general feeling is Benjamin needs support throughout his recovery but that the nasal ventilator is no loger a solution to that. They brought up the subject of a trachestomy and we heartily agreed. We had fought it when it was mentioned three months ago but now after seeing benjamin crash very time he is excubated we know its the only way to go. Its a simple operation ( although nothing seems simple with Benjamin) and they want it done before the bank holiday.
A trachestomy would allow him to be supported in his breathing and hopefully grow. This meeting was also needed to plan a time scale for his care. Peter made it very clear but in a gentle way that the plan was to try and have Benjamin home for his 1st Birthday. That is six months ago. Im sure you can imagine that those wors took a long time to sink in and caused some tears. So we carry on nad we adapt again and we teach, play, feed and be Mom and Dad and pray that we beat that plan and if we dont , then we focus our energy on helping him enjoy the time we will be spending here.

Benjamin on off Ventilation issues.... So many problems now

While we were moving house we had our A Team look after Benjamin. Kerry, Kelly and Liz so we knew that he would be absolutely fine. We weren't expecting any changes while we were moving home. Well we were wrong. Benjamin was having a funny moment and Professor Wolfe decided that he may be ready to come off the ventilator and put him on the vapour therm. There seemed to be an air of contemplation and awe that he managed to be settled on the vapour therm. when Liz phoned to tell us their plans and then to say it had worked and that he seemed ok. Me and Dave were surprised and very happy.When we go back to Bristol we will get to see our little boys face, his bonny little nose and hear his voice.
We then heard from Kerry that Benjamin wasn't doing so well and that he may have to go back on CPAP. That's not so bad its still not the ventilator. Benjamin was working very hard, his breathing was stronger and heavier and his colour was grey. Maybe CPAP will be better and we go back to our little boy with a little hat and most of his face showing.
All Monday morning we looked forward to seeing Benjamin, with some trepidation but excitement. He looked great when we arrived.  He was wearing his yellow duck baby grow, wrapped in his blanket and was awake and watchful. He loves his daddy's voice and just stared at him the whole time we were there. After about 45 mins Benjamin became quite unsettled and a little mottled. We finally left him sleeping so hoped that it was just excitement of seeing Mommy and Daddy.

I received a phone call at midnight telling us he had got worse and that he was going to have to be re-intubated ( ventilator back in) and that he still hadn't passed any urine either. So we knew it may have to happen but it was so sad. There are two sides to the feelings you get when your told something like that. The mommy side cries for the loss of your child's freedom to move, interact and play with you. having not seen his face for nearly 5 weeks, that little glimpse is heart wrenching. The other side is the grown up thinking that its better to be on the ventilator so that his heart you understand that its better to wait and  isn't pushed to hard and that the possible damage done to his heart function is minimal and will hopefully not even be an issue. as a grown up you know its better to wait til he is strong and naturally ready to come of the ventilator.
Sometimes I want to scream at the grown up side and tell it that I don't care whats sensible. I want my baby home! Why cant we have that normal life we are craving and why do I have to wait so long?
People tell me it will come but WHEN!!!!!!!

Rant over, Benjamin is now very poorly now. He is on the tube again, his kidneys have been damaged as the blood wasn't getting around as it should when he was working so hard. They have put in a PD catheter which is a type of dialysis. The tubing and bungs involved go through his belly which is just so awful.
He is on muscle relaxant so he is paralysed again and is on sedation and morphine. He was taken off his feeds til the afternoon.
We have gone from an active, verbal baby to a baby who cant move, cant interact and is poorly again and all in 3 days.Once he is stable again, we will be talking to the doctors and surgeons about having a traceostomy! Will we ever get home???

Moving House went well- 16th April 2011

We are finally in our new house. Dave has done an amazing job all week and we had help from Mike, my moms neighbour, dad and Marcus so managed to move in 3 hours. Obviously the new house is full and we can hardly move but its lovely to sit in the garden on the decking and have a brew imagining how it will be to have Benjamin home. All three of us stayed Saturday and Saturday night , Me Dave & Justice, which was lovely. Its been 5.5 months since we all stayed in the same house together.
I want to say Thank you to Barry, Marcus, Mike and Dad for helping us move and tip things and Thank you to Mom for helping clean and unpack and for Feeding us some amazing food while we were there.

Echos and Snores 12 April 2011

Benjamin had a great day today. He was very awake and happily playing with his jungle gym. I gave his morning wash and nappy change but still cant dress him yet.
The cardiologist came over to do another echo to check his heart. These scans normally last 45-60 minutes and Benjamin gets quite unsettled after a while but not today! The screen has lots of colors and lots of movement so he quite happily sat in his make shift sofa watching the screen while he had gel squeezed all over him and a cold probe run over his entire chest. When I next looked at him he had gone to sleep. Unbelievable! He obviously isn't fazed anymore by it. When the scan was over he woke up had a wiggle and then sat up to watch the Zowie again.
The cardiologist said that the heart function looked good and the valve was still leakimg but we knew that. In fact as an informal evaluation the echo showed good things and definitely not a step backwards.

I have been roped into knitting a corgi for the ward. William wants the royal family knit for the wedding. I have attempted  it and the body looks good but the face... well the only way to describe it would be the Sylvester Stallone of corgis. He has a chin that would crack coconuts lol
So to try and reconcile my knitting skills I made Benjamin a little blue hippo and that worked out great.
( Ill add photos shortly)

Medically Benjamin has had very little changes. His Fentanyl has been reduced slowly again. and his Hickman line is booked for Friday again. That's about it really. Its all very frustrating and sad but I know that eventually it will get better. I just hope that we get home by the height of summer.

New and exciting times with Benjamin 11 April 2011

Benjamin was very awake today and very wiggly when I arrived this morning. His beautiful dark brown eyes were so sparkly and his eyebrows were on overload. Zowie was on today so I was able to get his enoxaparin ready , administer then give him a lovely wash. He still suffers from a temperature so clothes are out of the question still. Its funny how getting your baby washed and dressed is so important and so gratifying so I'm looking forward to dressing him one of the many outfits my mom has bought. After washing him and wrestling with all the wires plugged into his legs to put on his nappy, we weighted him. Benjamin now weights 4.14 kg which is 9.12 lbs. He lost weight last week so I was pleased to see the gain.
After weights i got cuddles... for TWO hours. Benjamin cuddled in, pumped his arms around and kicked his legs like any other baby would. He has lost all his hair now so I stroke his forehead which makes him cross eyed!
Later on in the afternoon Benjamin was wide awake and fidgeting. I  decided to do his mouth care and gave him so water on the pink sponge lollies they supply. He sucked that lolly pop dry and when I took it away seemed to be looking for more. His non nutritive feed was due so we decided to give him it on the sponge. Benjamin loved it and as i dripped each drop on the sponge, he sucked away as if it was a bottle. He even took 3ml of water too. I was beside myself with joy. There is always an issue with babies that have never suckled and had feed in their mouth, to develop an aversion and never take to a bottle or even want anything in their mouth. The fact that Benjamin sucked on the sponge and took the milk, which tastes disgusting, and seemed to enjoy it is a really good step towards normal development.
 Unfortunately he swallowed a lot of air, over 30ml, and his belly got very hard. He also started to work very hard and had to have his oxygen turned up slightly as he went a little dusky.
That took the edge of my happiness a little but I'm sure its just something to deal with over time. Benjamin is such a beautiful boy with such a sweet and funny personality. I'm so excited to share that with all my friends and family.

Benjamin is ok ... & April 2011

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.

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.

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!

More Belly time but tryimg to escape his bed

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.

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.

HAPPY CHAPPY !

Thank you everyone xxxx

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.

Loves it on his belly

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.

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:

• 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.