The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Tuesday, November 27, 2012

Of floods and fevers

Just as the flood waters in England and Wales seem to be rising with all the rain this week, so do Adam's fevers seem to be going up and up with no sign of abating. And in the case of both flood and fever, the only thing you can really do is wait. Maddeningly!!

I finally brought Adam in to hospital again today at noon, mainly because his temp was again over the threshold the hospital had given me (38.5) and he had started coughing. Not badly, but he also wouldn't eat his breakfast and was laying around looking pathetic. When I called the hospital though, they told me that his neutrophils (a component of white blood cells that respond to infection) were only 0.3. This is even lower than the other day and properly "neutropenic", i.e. Adam has no resistance to anything now and will need hospital support once again until his body gets stronger.

As anyone who has taken their child into hospital knows, though, Adam was absolutely perfect all afternoon. No temp, ate all his lunch. The consultant Dr King even gave me a ribbing about jumping the gun when he came in. Right before he told me we'd be in "for a whilie" which is Scottish for a while. Not, as he said, "a wee whilie", but "a whilie". So that means, well, nothing really except be patient and wait for test results to come back and blood counts to go up and temperatures to go down.

Wait. Just like those down south whose homes are flooded are having to do. Only this is really not a crisis like that, this is not our whole life going up in muddy water. This is just annoying. This is just inconvenient, logistically difficult for our family and hard to get things done. This makes us feel disconnected and puts the pressure up for Daddy who still has lots of obligations at work to complete. Including a trip down south to the flood-hit lands for a viva--for somebody else whose life hangs in the balance, or at least their professional life!

Sometimes I can't believe how interconnected we all around in our own rat races and having minor and major impacts on others by what happens in our own lives. Being impacted by others, by the weather or travel chaos. And here I am, with loads of time to do things for other people and no way to do it! Or so it seems...maybe I will just have to get creative....

Anyway, back to Adam. His temp this evening was 39.5, i.e. "way high". And he had trouble eating his dinner because his mouth is more sore, poor soul. What to do? Wait. Apparently. And go visit the lifts in the meantime of course. :)

Friday, November 23, 2012

Still standing

Well, after a long week we are home and, yes, still standing.

Adam had to go in to hospital after all on Wednesday evening, after the doctors cultured a staph (staphylococcus) bug in his blood. Normally staph grows on our skin, so for it to be in Adam's blood, and potentially in his port (bugs like that love plastic inside someone's body), could be bad and they wanted to treat it quickly and with strong IV antibiotics.

Adam and I went in about 6pm on Wed, and the nurse finally came to give his IV at 9:30. He was about to drop from tiredness poor boy, but unfortunately for Adam his gripper needle had come out of the port since the night before. So at 9:30 at night and without any cream or spray to numb the skin the nurse tried 2 more times to get the needle in before she got it. Then she gave the antibiotic, but while she was doing so Adam was sick everywhere!! Poor boy, it took me a while to get all cleaned up and the bed made, but in the end we crawled into bed and he was asleep very quickly. We think it was not a coincidence, and probably the bugs were in his port and got flushed through with the antibiotic. Hopefully they were also getting killed at the same time!

The night was by far our best one yet (at the hospital), and we were only awake from 2-2:30am while the next dose was being given. After that we slept until 8am. I think we actually did better than Daddy, who had to manage both Caleb and Agnes up during the night at home. And this after he had only flown in from Chicago at 1pm that day!!

Anyway, the next day (Thurs) we found out that it's the "less bad" type of staph bug so we were allowed to go home. The only catch is that Adam has to go back up to hospital every day at 4pm for his antibiotics until next Tuesday, provided that his cultures on Sunday are clear. This is indeed a small price to pay. And the doctor gave us two different medicines for both the thrush and virus in his mouth that are making it swollen and sore. He has a huge cold sore on his lip, and has been drooling like a madman all week! It's getting better already though, so hopefully he'll be much better by Monday and can go back to school. And eat again!

Because of all this, the doctors decided to postpone his scheduled lumbar puncture until next Thursday, so he will have a week to feel better and be all clear of bugs before his procedure. I am looking forward to that and a clear test so that I can lay my worries to rest, for another month at least. I really can't wait until this is all over and he has all his energy and strength back so that he IS well, rather than just looking well. I know several moms who feel the same, and it's a real encouragement to have their support and know I'm not alone in this waiting game (you know who you are!) :)

And now, despite another little fever tonight and a complete and utter meltdown about not getting to have a bath at the hospital, Adam, and his brother and sister, are sleeping in their beds and I'm about to join them. It's been a long, long week and even though I'm still standing, I'm going to lay down for a while.

Adam's face when he saw Daddy for the first time in 6 days...kind of melts your heart, doesn't it? 

Tuesday, November 20, 2012

The Fear Factor

Little bit of pins and needles this week, though at the moment all seems to be well.

Daddy has been in New York, visiting Auntie Lou and family, and then on to his conference in Chicago. He left last Thursday morning and returns tomorrow, yay! Six days is a long time in the life of 9, 6, and 20 months!! Sounds like all has gone well though, minus a few hours of sleep that always get left out in these situations.

In the meantime, we've done well and are having a rather wet week in Aberdeen. The only slight concern is that Adam has been having low grade temperatures since the night before Brian left. It wouldn't be concerning except that it hasn't gone anywhere...nothing else seems out of the ordinary. He's been tired and grumpy, but you could say that for me most days of the year! However, the nurse who came today to take his bloods thought we should take him in for a full blood count, so we did. Caleb was at his friend Jacob's house, so Agnes, Adam and I went up about 4:30pm and were miraculously home by 6pm. We even had our tea and a Mr Tumble too!

I just called and the blood results were normal enough, though his neutrophils are close to the "too low" (neutropenic) level. He is due to have a lumbar puncture this Thursday, so as long as the docs are happy that will go ahead as planned. We'll see how he is tomorrow, and of course now that he has some oral antibiotics he should be fine.

My stress level has been noticeably higher the last few days, though I am reminded of the adage "You find what you are looking for." I don't want to look for Adam's leukaemia to be coming back, I don't want to even be thinking about that. I want to be so positive and strong that the option just isn't even on the table. But this isn't really about what I want.

This is about my boy, who has been a strong soldier through so much so far, and what God has for his life is unknown to me. I wish I could make everything right for him, but my prayer in this time of fear and uncertainty and doubt is that I can at least make everything safe and gentle for him, inasmuch as it's up to me.

I am probably not abnormal in saying that I am full of both fear and courage, weakness and strength, doubt and unwavering belief. I both know and don't know what I think will happen in the future, but again it doesn't matter--what happens is really immaterial, it's how you live now that matters. And Adam is a model of living wholly, every minute not as if it were his last, but as if each minute is worth his full attention. He is here now, sleeping peacefully in his bed. I am grateful for that, and for this moment as for many before to be part of his story, no matter how or when it ends or the many adventures that go along with it until that day.