Off I went down the M62, yet again

Slight problem last Sunday when another dash to Alder Hey was needed. Thankfully this time it didn't involve the body of a two year old, this was more to do with my obsessive cleaning habits.


I decided to put the extension tube to Zack's Mic-Key button (the bit that we attach in order for the food to go down) in to the steriliser. Well I thought it would give it a really good clean. It did. It also melted the top so we could no longer attach the syringe. Bearing in mind we were only given one of these, mild panic set in, it was Sunday night and it wasn't like I could pop to the chemist and pick one up.


I know I'll phone the local hospital. Nope they ain't got one, why not try Alder Hey. Bingo. A nice nurse in one of the wards found one for me and so off I went down the M62, yet again. At least now I know not to steam clean the tubes but maybe they should come up with one that doesn't melt in the steriliser.


We went to see the dietician the other day. Zack got weighed, he is still the same but 2cm taller than last time. I am sure the scales aren't right, I mean he is getting really heavy to lift and is starting to hurt our backs. I also had the discussion with the dietician about his blended diet. She still couldn't recommend it even though he's stopped throwing up during every meal. 


I asked why. One of the reasons given is that Zack wouldn't always be getting his nutritional needs met through a blended diet. I said I didn't understand the point and the dietician explained that through a blended diet you cannot be sure of the calorie content. Well hang on, does every parent feeding a child that eats normally count the calories or even know how many calories their child should have. Nope. They just feed them. I on the other hand know how many calories Zack needs, how much fluid he needs and I give him a diet that is probably healthier than most children as I can get all sorts of veg, and good things down his PEG. 


Anyway I just nodded, explained all of the above and said it was a shame more health professionals couldn't get on board with this method of feeding. We agreed that I didn't need to come to more appointments just for weighing as he usually gets weighed at the hospital and that if I need to see her I can just get in touch. Works for me. And off we went back home to some blended cottage pie. Nice.

We've finally decided

As I've mentioned Zack always had trouble with his suck and swallow since he was born, so he has been fed via a Nasogastric tube. This is inserted through his nose and down into his stomach, all his milk, medicine etc is given through this tube. A lot of prem babies are NG tube fed at first but then most do learn to breast feed or take a bottle. 

Zack was never able to do that. I can't tell you how difficult it was to watch other babies in the Special Care Baby Unit feeding normally. In some ways we thought if we can get him to do that then he'll be okay, he'll be just like all the other babies. 

Whilst in hospital Zack got to see a Speech Therapist, not to learn how to have a nice chat with his mum and dad, but to learn how to suck and swallow. And so we started the dummy training.  Every time we fed him we would have to encourage him to suck on his dummy so he would associate sucking with his tummy being full. Zack made very slow progress, in the end we were trained by the lovely nurses on the unit in how to insert an NG tube. I tried to avoid this for a while as the thought of the whole process was difficult, his dad was a little braver and managed it fine. After I did it once, it wasn't really that hard. Poor Zack has the short straw, whilst me and his dad hover above him with the little tube he's the one who is distressed for a couple of seconds as it hits the back of his throat. It breaks my heart every time we do this, I hate the thought of causing him any pain.

We brought Zack home NG tube fed, this also meant setting up a whole host of supplies which would arrive every month containing syringes, tubes, and ph strips. 

Zack's suck has greatly improved from those first few weeks in hospital.  From not holding his dummy in and doing virtually no sucks, he can now keep in his dummy and does lots of sucks. He just isn't very co-ordinated at it all. He can now drink tiny bits of water but it is nowhere near enough volume to maintain his ability to put on weight. So we were faced with the suggestion of taking Zack to have a Percutaneous Endoscopic Gastrostomy (PEG) fitted. This is where a flexible feeding tube will be fitted into his stomach. The operation is very short and we have been advised that to help Zack with his feeding, this will be better for the medium to long term. 

It has taken us a while to come to terms with the idea of having this operation done, but we've finally decided to go ahead with it. We know that once he can feed orally and sustain enough food to thrive the peg can be removed. We also know that it will be better for him as he won't be irritated by the NG tube down his throat, we won't be constantly battling with him to stop him pulling it out and we won't be terrified that every time we put it in it's going to go down the wrong tube and into his lungs. 

Believe me this decision has been difficult, most probably because psychologically all parents want to nurture their children by feeding them and what we are doing is completely abnormal. I know of parents who have children who have had a peg fitted and it has helped them immensely, I also know of children who have had one fitted and then removed not long after they have learnt to eat.

What I have come to terms with is that getting Zack to feed orally will be a long process but I know he will do it, I have a feeling that once we can get him on to pureed food he will find it easier to manage than liquid. 

We have recently been to an appointment at the feeding clinic at Alder Hey. They were all very helpful and went through the options of how we can get Zack to feed, there was no pressure on us to opt for the operation but I know it is the best option. They also explained that due to the damage within his brain he may struggle with using the muscles in his mouth hence why he has difficulty swallowing and sucking. I know he has the ability to do it but I also know how hard it is for him. Bless him, I am so proud of him when he tries at drinking his water, sometimes he looks at me as if to say, "yeah, what's all the fuss about give me some more" and other days when he coughs or gags on it, he looks at me with shock and it makes me feel so helpless.

Oh yeah, in case you are wondering why we can't just shove a bottle in and why we are so careful feeding him...well, if Zack can't control his swallow very well he could aspirate. Essentially he could take some liquid into his lungs and not into his stomach, this means a host of problems such as serious chest infections or as the speech therapist once mentioned, effectively cause him to drown. So that's enough to put me off ever trying too much before he is ready. See I told you he is teaching me patience.

We are going to make the appointment for Zack's operation tomorrow. I know I will make that phone call with trepidation, still thinking if I am doing the right thing, still part of me not wanting to do it. But I have to do what's right for him and hopefully we can then just focus on letting him enjoy nice things to do with food rather than the awful things such as ventilators, suction machines and tubes.

One good thing though, if anyone ever needs an NG tube putting in then I'm your girl!