Before I continue I have to say that Alder Hey Hospital is absolutely fantastic, the staff are brilliant and you do feel you are in very safe hands. However, it is absolutely filthy. It is really tired and run down. The room we were in was dirty, there was bits of rubble over the soap machine and hair and fluff all down the sides of the skirting board, I couldn't wait for us all to get out of there. Zack on the other hand had other ideas, which involved an overnights stay with his daddy sleeping in yet another hospital chair. (He was offered the camp bed but said he preferred the chair as he was at eye level with Zack's head so he could see if he was in any pain or upset......that's dedication. I think he is going in for Father of the Year Award. I would have took the camp bed, my view is Zack was hooked up to a monitor and if anything happened an alarm would have gone off and a nice calm nurse would have come in and made it all better. But Dan is a bit of a martyr.)
The operation for Zack's gastrostomy to be fitted went well. It was all over and done with in about 45 minutes. It was afterwards that was distressing.
The poor little man, his mouth and throat was so dry when he came back that we gave him some water on a piece of gauze and he tried to suck off every last drop. He was in some distress eventually he calmed down and the nurse gave him some water through his new tube in his belly. She did this very quickly, basically 50mls of water in about 30 seconds. He immediately threw this up and then to top it all struggled to breathe. She used the suction machine to clear some of the liquid in his throat and gave him a bit of oxygen. He got his breath back quite quickly but I think from then I knew it was definitely going to be an overnight stay.
Zack was in quite a bit of pain and discomfort throughout the day and couldn't keep his food down so he was put on a drip. By about 9pm he had settled down and was starting to sleep making intermittent whimpering noises, he sounded like a wounded animal and I was starting to regret the whole operation. Dan stayed the night with him and I came back the next morning at about 8.30am.
Zack seemed a lot brighter and was keeping some of his food down so we were allowed to go home. I'd like to say that the past few days have been easy but no, they have been very stressful.
During the operation they blow gas into the stomach to expand it so that they can see where to make the incision. This makes the baby very colicky afterwards and you have to release a lot of the air through the tube. This trapped wind causes them a lot of discomfort but for Zack it has been carrying on for quite a few days now. He is a windy baby anyway so this has only added to his discomfort. He has also been vomiting some of his food up, so we have had to take it very slowly and just give him small amounts. He hasn't been getting his full volume but at least he has been keeping the food we are giving him in his tummy. They also cut through the stomach muscle so the inside may still be a little swollen. They gave us a load of painkillers to take away with us but so far he has had a little bit of paracetamol here and there. They did mention that we can give Zack Codeine with the Paracetamol but it does tend to make them sleepy........hmmmmmm, that's something to think about.
Zack is a lot brighter now and very alert, by very alert I mean he doesn't go to sleep in the day at all now. This means I can no longer fit in all my normal little chores (great excuse for not washing up). However, my saviour, the Little Room is the answer to my prayers. I can stick him under there now and he's quite happy for an hour or so.......I think it is the most magnificent idea in the history of toyland.
Zack's little episodes are becoming a little less frequent and they aren't happening in as many batches now, it's just back to the one or two here and there, over a day he is tallying about 20 - 25 of them. I spoke to the epilepsy nurse who is coming to visit us on Friday and she explained that he isn't on his full dose yet so it's not going to stop them until he gets to the increased dosage which we will put him on next week. If they increase when he is on the full medication then we will have to go back to the drawing board and see what to do next. So fingers crossed that this medicine works.
This has been a really long week for the three of us. And whilst I had my doubts about the gastrostomy I am now convinced we did the right thing. Zack is much happier without his NG Tube, his breathing is easier and he has less secretions. Hopefully in a couple of weeks we can get him back to his full volume, less the vomiting and less the painful wind. But as usual it's all one step at a time. Oh and one other new thing Zack has learnt, shouting....very, very loudly. He now opens his mouth more when he is crying, in fact today he was so loud he frightened himself so much that he actually shut up, now that's clever.
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