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.