Surgery for the intrathecal baclofen pump on Tuesday and I am petrified

[infamouspoo]

I've been up all night convinced ds is going to die. Its not helped by the fact the stupid physio let slip the op on friday. ds is intelligent but cannot move or speak so has spent today yelling and grumpy and stiff with muscle spasms. He cant verbalise his fears and is in a right old state.

I hate putting him through another op, especially when he wont be 'cured' if you know what I mean.

[Summerloading]

Hope it goes well

[zebrafinch]

My DS has the baclofen pump. There were no problems with the op. He recovered from it very well. It has made a big difference to him. His muscle tone was extremely high before and he has been much more comfortable and relaxed since getting it done. I remember crying that Christmas because I was so happy that he was so much more relaxed
I hope your DS has a similar outcome. Yes, it is not a cure but it has been one of the best treatments my son has had. I know different children may respond differently. Hope it went well today.

[Summerloading]

Thinking of you

[infamouspoo]

well its in but 24 hours later he's puking and screaming, raging temp and distended abdomen. He's on high dependancy and they are all trying to figure out wtf is going on.
The neurosurgeons dont think its the pump so we're waiting on blood test results.
so tired.

[Ineedmorepatience]

, honking for you infamous

[mymatemax]

Infamous, I hope he's on the mend soon, thinking of you.

[zebrafinch]

Hope they find out quickly what is causing this.

[zebrafinch]

Infamous, Really hoping your DS has turned the corner now and that you are getting some sleep.

[zebrafinch]

Infamous, Really hoping your DS has turned the corner now and that you are getting some sleep.

[Summerloading]

[Borntobeamum]

I hope your DS is improving and will be comfortable soon.
Hugs to you too x x

[infamouspoo]

temp still spiking. I suggested they remove dressing and examine wound but they said no. ppalling signal at hospital

[zebrafinch]

have been thinking if you infamous and your DS, had hoped to hear that they were on top of things now and your DS was improving. Are you in Bristol? My DS went straight from op to the ward, so sorry to hear that your DS is in HDU, I hope the antibiotics are kicking in now and start working . Have you had the blood results back?

[lougle]

Only just seen this, infamous. How are things this morning? It's so hard when you can only observe and your child can't communicate how they feel easily.

Is there a plan, or watch and wait?

[infamouspoo]

seems to be on the mend today. They upped the pump dose. Dressing is being changed as he managed to puke on it. He's now bored. Bored is good. Waiting on more blood tests as potassium levels are low due to puking but he's kept feeds down today. Yelled at another child who was having a birthday. Thats ma boy.
Legs are definately limper but no change in mega stiff arms yet. I am wandering around trying to get an internet signal hence the short tweet like updates!

[Summerloading]

How is ds today?

[infamouspoo]

grumpy and home. Poor lad has had a traumatic week. Me too!

[zebrafinch]

So glad you are home and DS is on the mend. Hope he gets on well with the pump and it makes a difference