He sounded like a wounded animal

The Pants has survived his first operation.........but it hasn't all been plain sailing. Mind you, I think we have come to expect nothing is ever suitably straightforward, this boy is all about the drama.

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.

He has been started on medication called Sodium Valproate

It's Zack's big op day tomorrow. He is oblivious to it all. Meanwhile I can't stop thinking about it. I have even written a list of what to take with us, I mean how hard is it to remember a change of clothes and his food!!

We went to see Zack's consultant on Monday afternoon. I had a call from his secretary asking us to come in at 2pm. I met Dan at the hospital, he looked extremely worried. I asked him why he was so petrified, he looked like we were taking one of the cats to be put to sleep. He said he was terrified that the Doctor was going to tell us something awful about Zack, sometimes Dan gets himself wound up with too much thinking.

Zack's seizures are atypical, meaning he doesn't have West Syndrome, he is suffering with a form of epilepsy. If we don't get it under control it will get worse. He has been started on medication called Sodium Valproate. There is a list of side effects as long as your arm, but that is the case with a lot of medication. I think the main one is hair thinning, well in Zack's case, not much of a problem there. 

We are to start on a small dose and increase it gradually over time. From looking into things, this may or may not work in getting his seizures under control. We will just have to wait and see. We have been asked if we can try and keep a diary of how many episodes he is having in a day. Great, this means Dan will become even more obsessed with counting the activity of the Pants. 

Over the past day or so we have noticed an increase in the number of times the seizures are occurring, they are now happening in bursts of four or five, inter-spaced with 40 second intervals. So far today he has had 21, not good, but I am hoping the medicine will begin to work in a few weeks. Zack is also a little bit less alert than usual, again I am hoping this will subside and his alertness will increase. 

Things are very tough at the moment, there is a lot going on and a lot for us all to deal with. I said to Dan the only way I can explain how I feel is that we are at the foot of a very big mountain and I haven't even got halfway up. I'm still at the bottom stood on a little ledge. I hope one day we'll be able to stand at the top and look at the sunrise.

If only we could just get a break or a glimmer of hope it would lift us a little. Hope is a very difficult concept to hang on to when you are faced with a daily serving of difficulties. It doesn't help when one of us gets down about things, we only really have each other for support. As nobody truly understands what our life is like we lean heavily on each other. 

I think this week is just a difficult week and I am sure there will be many more to come. Hopefully next week will be better, I just pray every night that Zack makes some improvement, he deserves all the help he can get.

I feel like I am in a very small funhouse for teeny tiny people

I realise in my last post the picture of the Bumbum chair hasn't quite worked, will try and get some new pics of it on here soon. 

I took Zack to use the sensory room in Latchford on Friday, his Auntie Karen came with us. I had booked the room for an hour all to ourselves and it cost us not a penny........I was quite impressed with that considering I was going to spend £40 on Baby Sensory Classes.

So we get to the family centre and oooh and aaah at the nice little building tucked away, then we get taken to the room and oooh and aaaah at the spinning lights. The lady explains how to use the controls for the room.  Meanwhile Zack is checking out the spinning lights and I'm starting to feel nauseous at their endless repetition around the room, I feel like I am in a very small funhouse for teeny tiny people.  The nice family centre lady leaves us to it and we get excited about the nice big comfy leather beanbags and then Auntie Karen gets extra excited about the special little seats for babies. When I spot what she means I too get extra excited, yes, ladies and gents, the sensory room only had the best seat in the world, the Bumbum chair, fantastic. This was followed by lots of screaming about the seat, then Zack got plonked in the seat, followed my more screaming of how cute he looked in the seat. 

By this time Zack really didn't care about the room and went to sleep for the full hour.  So Auntie Karen and I spent the hour gossiping, lying on comfy leather beanbags and relaxing to classical music all whilst messing about with fibre optic lights. It was very relaxing....I recommend that every office in the UK has a sensory room, they're fabulous.

The Pants and I shall be returning for another visit soon, this shall definitely be added onto our list of therapies.

This week coming up is going to be a busy one, we have appointments all week. 

One good thing though, I had a phone call today from a lady whose little boy has a PEG fitted. She is more than happy for us all to come round and visit to see what they look like. I did ask if her little boy wouldn't mind and she enthusiastically explained that he doesn't mind at all, in fact he is often curious to see if other people have them too!!

 Talking of the PEG, Zacks date has come through for his, its on the 15th July. I am very nervous about it, even though we have made the decision I still find it all very uncomfortable. I think for me this is one of the strangest things about being a parent, making decisions for another person. I very much believe that you should be responsible for your own decisions, make your own choices and be in charge of your own destiny (as much as is possible). Now here we are, making a choice for our son to have a tube fitted  into his stomach so that we can feed him. People tell me it's the right thing to do and I know it isn't permanent, but I would give anything for him to not have to go through this. I think I am more terrified of the operation (even though it is only about 10 minutes). Dan isn't worried, he thinks after what he's been through already this will be nothing for him. He also thinks he is a tough little man. I suppose he is but that still doesn't stop me from wanting to scoop him up and protect him from the whole word and lock us away safe from harm. But isn't that how most parents feel?