Day 3/4 still in Exile

We are still at the hospital.

For a second there I was tempted to just leave it at that. Not write anything else.

I kind of had an idea what to blog about tonight but now it is all gone.

Anyway, I guess I should just update you all a bit. Vega is afebrile (fever free) since yesterday afternoon. That is very good news. Febrile neutropenia that lasts longer than 3 days is very worrying, so we were very glad the fever went. Today we heard her cultures all came back negative. That is also very good news. As of tomorrow one of the two antibiotics she has been receiving will be stopped to see how she does without it. The doctors are concerned about her neutrophil count which is still very very very low and has so far shown no signs of going up, so they feel we shouldn’t really go home until they have recovered somewhat. That is not very good. It might take ages. I argued that she has had very low counts for the last 9 weeks and has been home all along, except our short stint in hospital over Easter. I will discuss this again with our Onc/Hem consultant on Monday but we will definitely be here until then.

Vega is doing ok. She is tired and grouchy at times and still has diarreah, a fact I have not highlighted excessively with the doctors. I think it might have been another tummy bug that has landed us here in the first place, but the current poo issues are probably related to the current high dose regime of antibiotics. She is quite weak and can’t stand or walk (again) but she is barely eating so I am hoping that once she gets some food into herself she will regain some strength. Eating is always an issue here, but the food at kings is awful, so I can’t blame her. I am also getting fed up with microwaved meals, but even those are better than what Vega gets served up. It is incredible that people are supposed to get better on this stuff. I think I read once that the NHS spends less money per meal than what a school dinner would cost. That’s less than £1.80 or so then? I am not surprised.

But all of this was put in great perspective today because there is a little boy here on the ward who I suspect will pass away very soon. We are right at the end of the ward in the isolation room so I always have to walk the entire length of the corridor to go to the parent kitchen, or the linen storage or whatever and I always walk past his room which is quite far towards the front. He was already here when we arrived on Wednesday and I have not seen him move once. He is maybe six, like Lyra’s age and he has just been in bed, sleeping. There is a nurse in his room 24/7 and today his room was full with people while the woman I presume to be his mum was half lying on him and was crying. I could see glimpses through the window in his door. I am not trying to be nosy but I just couldn’t help but look, especially because the woman was crying and I heard her. It made me so sad. I have no idea what is going on, if it really is as bad as it looks, or why he is here. It just reminded me what this place actually is. And while I am complaining about the food, or why they are keeping us here, or that we can’t go in the playroom, there are many doctors and nurses who are here to make children better, in some cases even trying to save lives. I don’t want to come across as ungrateful, because I am not. I am thinking of the little boy tonight, and while I do not pray, or even believe in god, I am sending my thoughts out tonight for someone to hear. Maybe even just down the corridor to his mother.

The nurses here at Toni and Guy are very nice. They are slightly stretched but ever so kind and everyone knows Vega by now, and Alys, everybody knows Alys. Last night Ray stayed with Vega, while I took Lyra and Alys home. I am a real control freak and I worry about Vega a lot when I am not here. So whereas I did really need a night rest at home I found it very hard to leave and was very snappy with Ray. I worry that he doesn’t do a good enough job looking after Vega, which of course is a load of rubbish. He and Vega did very well and had a good night and as he knows how much I fret over these things he did send me updates on Vega’s blood pressure and temperatures throughout the night. It was good to be home with Lyra and Alys. Lyra worries about Vega a lot. She doesn’t often say it but I can tell by her many comments about missing Vega, and not having anyone to sleep in the bunk with her, or go in the bath, or read a bedtime story with… The list goes on. And I have the same panks every time too. Two children eating dinner, two children in the bath, two children in pyjamas. It really is not right. I have three children.

Tonight I am back here with Vega and Ray is at home. I have promised Lyra to take her and Alys out tomorrow, to a museum or something else fun in the city. She is also sad to have missed out on the Shrek treat that would have been today so maybe we have to go and eat some ice cream and buy shoes. Or something like that.

Ah my Vega-Bear. She is sleeping here next to me in the big bed. She is so absolutely perfect. The little fingers and arms. Beautiful feet and legs and a face like a doll. Unbelievable that there is something so wrong with her on the inside.

I can tell that my mind starts to jumble. I think it is time for bed. Speak to you soon, outside world.


2 thoughts on “Day 3/4 still in Exile

  1. not sure how i missed these updates – just thinking of you constantly and your beautiful Vega-bear. PS has the woman from the special diet kitchen been around – i complained about the food at kings (and fyi my main hospital is even worse if you can imagine it!!) but they made me some special meals – i just made a big song n dance n they came around with some better options xxx

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