Yesterday we spent all day at the hospital for transfusions. Stuart and I have made the decision, with support of our Team, not to go back again. The transfusions are of very little benefit now, in terms of providing Ollie with sufficient energy to do things that are enjoyable to him. Getting to and from the hospital is an ordeal, as the slightest movements are very painful because of the extreme swelling all over his body, and the transfusions only add to the fluid overload.
Ollie is sleeping 20 hours a day on average (although sometimes he is conscious enough to hear when we talk about people visiting and will say “no visitors!”). When he is awake he may spend a little while watching TV or his iPad, and maybe trying to eat a little, but tires very easily and goes back to sleep. Although his breathing is fast, he is not conscious of being short of breath for the most part. He has a morphine pump which he is able to operate using a small button. The morphine, as well as controlling pain, is very effective at relieving anxiety related to shortness of breath. The analogy used by our doctor is that after climbing 20 flights of stairs you would be gasping for air; if someone gave you a dose of morphine at the top of the stairs, you would still be gasping for air, but you wouldn’t care.
We’ve had a bit of a rough transition here at Emily’s House, but things are settling down now and we still feel this is the right place to be. Jack is staying with us and quite comfortable being here. He takes off during the day to hang out with his friends, sometimes at our house, so it is a bonus that EH is in our neighbourhood.
Everyday is an emotional roller coaster for us, of course, but yesterday was especially so. Because we made the decision to forego further transfusions while we were still at the hospital, it made leaving the hospital very emotional, knowing we wouldn’t be back. Sick Kids has been such a huge part of our lives for the past 18 months. Leaving there means leaving so many amazing people we have come to love, but also that we are that much closer to the end of this “journey” (hate that word but can’t think of a more appropriate one).
I get so very angry these days. I was speaking to a staff member here about some issues we’ve had here the last couple of days (that are now corrected), and how, although they would seem trivial in any other context, they are major to us at the moment. She said they may be “little” things but if they affect you negatively right now, they are big things and should be treated as such by anyone around us. This especially applies to Ollie. Awake time is precious, so if he wants to watch tv, for example, and the TV has not been fixed, it is a really big deal because he shouldn’t have to deal with any frustration or disappointment, and we shouldn’t have to watch him deal with it.
So, although I have been grateful for the many, many kind things people have done, or offered to do for us, I have been raging at the odd thoughtless person we encounter, or anyone who causes my little family a moment of stress or upset. People who really care for us are abiding by the “Grief Circle”. Comfort in, dump out.
I guess that was part update, part vent.
I’m not sure how often I will update, or even be on FB for the next little while. Please still comment and post here, or send me messages, but I may not respond. If you need to ask me something or tell me something, please message my sister, Zoe Carpenter. She will relay any questions/information to me. I’d also prefer not to receive texts unless absolutely necessary.
Thank you all for your love, help, patience, yummy treats, etc. ❤️