The ITB (or baclofen pump) was first suggested to us when Moo was 3 years old. We didn’t arrive at the decision for the pump surgery overnight and it certainly was a long process.
When ITB was first suggested, Moo had a lot more function than he does now. The suggestion was met by hubby and I with an indignant and stubborn “over my dead body”.
When you see the pump, you can understand why the first reaction is disgust mixed with a lot of fear.
After hip surgery in 2009, it was again raised but we didn’t do anything more until after the plates were removed in 2010. I spoke to our paed, who did the referral to the rehab paed, who in turn referred us to the ITB paed. A long process and hubby and I both went to the appointment, looked at the pump and said “Absolutely not” again.
Earlier this year I had an appointment with the Orthopaedic Surgeon. He isn’t known for his bedside manner. But when it comes to surgeons, you want the talented surgeon with no bedside manner over the surgeon who is great to talk to but not so great in the operating theatre.
In his defence, we actually finally had a decent talk. He put all the cards on the table and let me know what our options were for Moo’s future. It was a sit down type of conversation because as it turned out, we were out of options. They had all been exhausted. Moo had less than 2 years before his contractures became fixed and permanent in his view. And the only way we could turn is back to the ITB in order to get his tone and contractures under control. And then we would have options again.
I am so proud of hubby as when I went home to tell him about the appointment, he didn’t stick his head in the sand or rule it out. We went back for another appointment. The ITB team made hubby sign the consent forms. They wanted to make sure that he was on board. They were worried that if things went wrong, that I would get the blame from him.
So we went for the test dose, which went amazing. We confirmed our decision and got to the place where it was supposed to be “over our dead bodies”. Only we weren’t dead yet. Dying on the inside maybe.
The tough choice had been made.
Once you make those type of decisions, you just want to get it over and done with. We were fortunate that it did happen very quickly.
Surgery was Tuesday morning. By Tuesday afternoon, Moo was on the ward but not very happy. In fact at one stage he was screaming at everyone to stop touching him and to leave him alone. He was also begging me to get them to take the pump out.
I was really second guessing the decision.
Wednesday. Pain was an issue so I made sure he was well medicated. His bowels were impacted. They had an IV going into his right hand (his good hand). He had a NG, was vomiting back everything that went down. And there was this huge thing in his tummy. Moo stopped talking to me. He only wanted his Daddy. And although hubby didn’t say it, I was beginning to think that we had made a huge mistake. The only thing saving us was that Moo’s legs were so relaxed and beautiful.
Thursday was not looking much better. Still vomiting anything that went down his throat. Unable to eat. And the team made an incredibly brave decision to remove the NG to see whether that was causing more problems than it solved.
And it was. He stopped vomiting. Started eating and drinking. And talking. And wanted to play the playstation or more accurately for me to play as he still had the IV in his good hand.
We are incredibly lucky to be surrounded by a great team of people with the CP Health team, our private paed and physio, not to mention his team at school. I’m really happy with the people Moo has in his life. I know that they all care about him and don’t see him as his disability. I think that this would have been much harder if we didn’t feel so supported by all of them.
Moo was home Saturday. And he has gone from strength to strength.
So, for those of you wondering about the ITB or have it in your child’s future – these are my thoughts – going in, I thought that if the only thing that happened was that Moo would sleep better, then I would be bitterly disappointed.
You don’t realise how much you miss something until you see it again.
Yes, he sleeps through the night and it is blissful and if this was the only benefit then I wouldn’t be disappointed. It is still strange that we put him down at night time and the next thing I know, I’m waking at 5:30am wondering how I got here without the 3 – 4 flips during the night.
We are on the slow process of increasing the dose. He is about at a quarter of the dose that he is expected to receive eventually. His legs are lose but not floppy. It hasn’t gotten rid of all the tone yet and Moo has said that he can’t feel his legs. He now has to relearn how to move because previously his movement was from tone. But he will get there. He has said that he likes how his legs feel but he doesn’t necessarily like the pump. His skin is still stretching over the pump site and it is a strange feeling for him.
Last night he rolled onto his side apparently effortless. He moves differently. It’s hard to describe it but it is nice to see.
He still hasn’t toilet trained and somehow, his nappies now don’t leak. This is a great plus. Not so much washing!
I’m trying to keep my goals realistic. Not to get excited too much. But it is exciting. Very, very exciting . . .