If you guessed the hospital ~ you WIN!
Here is a photo from yesterday, while Mathew was receiving one of his two units of blood.
He was cranky last night and it was almost a relief when he fell asleep. I think if you look closely at the photo he is flashing his middle finger to the world. That’s what he told me he was doing anyway.
I wish I could say he was better today but he was curiously listless up until the time I left to run home for a shower and to feed the dogs. He refused to drink anything today and I’m hoping John has better luck getting Matt to drink anything. Although the nutritionist brought a special supplement for Mathew to try; it is 60 ml of vanilla-tasting boost type of drink. It is laden with protein which Mathew needs right now for his body to repair all the damage to itself.
Mathew looks so sweet when he sleeps. Below is a photo I took today while he dozed.
He is so happy I’m with him…well, as happy as you can be under these circumstances. He is miserable due to pain and suffering. He has mentioned a wish to be dead rather than suffer as he is, but I firmly tell him I need my movie buddy because who else would discuss all the intricacies of the world of actors and movies? He just says that when he’s had enough and wants to crawl out of his body for a while.
The weather finally turned nastier; with snow and rain. The usual frozen slush of this place. Oh how I love it! John put the winter tires on my car yesterday before he came to the hospital, then realized he put them on the wrong side…so, he had to take them off and due it all over again. Anyone in Quispamsis hear loud cursing around 6 pm yesterday?
It is the aim of Mathew’s doctor and us to put the feeding tube in this week. It is so difficult getting his blood levels up that I’m afraid of what could happen if we don’t go ahead with it. Mathew is very scared of the tube but he maintains he cannot drink the minimum requirement to keep him healthy. The nutritionist came up to speak with us today; the idea will be to keep Mathew at this current weight. Yeah, 50 lbs in 2 months is enough for me. It will be hard enough to keep his nausea under control while feeding him through a tube. If he is nauseous he is still going to vomit whatever we put in his stomach.
I watch movies on my laptop when Mathew sleeps. Or I cruise the internet on my iPad or play a game or two. I don’t have a problem staying in the room for hours; all these years of being housebound and tied to Mathew trained me well for this. I can let the world pass by and it doesn’t bother me a bit. It is very nice when I get out for a little but then I like to be home, resting and chilling with the animals. I feel guilty they are neglected from our attention; but what can I do? I did find new homes for them almost two years ago but they both decided home was with us and they came back (Jasmine twice). My heart cannot let them go again; I hope somewhere in there doggy minds they understand what is happening (I know John; this just makes you want to weep, doesn’t it? For those who don’t truly love animals you just can’t understand).
Mathew is receiving another platelet transfusion because his levels dropped down to 13 again. That is where it was on Friday when they transfused him them. Oh I hope his hemoglobin stays up now ~ today it is at 85! His white cells counts are very, very low but not at ZERO as they were yesterday.
When I blog on my iPad it is a royal pain in the derriere. It doesn’t work that well and is very frustrating; it often freezes and requires redoing. So it will be short updates so I don’t have to smash the iPad against the wall…and then have to buy another one.
This is a very difficult week for us. Once the feeding tube is in it will probably not be that big of a deal; especially if Mathew finally gets the calories and nutrition he so desperately needs. It is like the biopsy and the Port; before they happened we were so stressed and worried. I cannot tell you how it feels to hear your child needs a feeding tube…not without crying anyway, so let’s no go there right now, shall we? Once it is in then the fear will ease and it will be more a mundane matter and much easier for poor Mathew.