The up swelling of support from friends and family all around the world! The contact and comments of support, love, and kindness help me manage my own feelings of homesickness, fear, helplessness, and isolation. I look forward to seeing the icons that I have a message or a comment from someone I know. Especially when I am in a room with a very grumpy, sick, moody preteen. The escape to the IPAD (thanks so much Dan as it fit in my purse!) is very helpful when Ryleigh just wants me to leave her alone! Also, the expert advice from my dear friend Holly who has a son that suffers from this disease also. Her priceless advice, calm voice, and caring words helped me get through a few darker moments today!
Prednisone – a steroid that helps decrease inflammation. Ryleigh responds well to this medication as it seems to be the only thing that slows down the flare. However, it is not a medication that can be taken for extended periods of time. The side effects are too damaging – the one that Ryleigh is most fearful of is stunting her growth permanently. They are discussing the fact that she may be a small part of the chron’s population that is steroid dependent in order to get better. She is getting the steroid through an IV and as a result it can help her more quickly. Right now it is helping her be more comfortable – maybe it will be the first piece of the puzzle for recovery.
Crohn’s disease is a tricky one to figure out – that is the message I got from the specialist today. I had kind of figured that out but was reassured to hear it from an expert. He confirmed that Ry’s current experience with the disease is not the typical response. He said many kids who get the disease can be treated with the basic medications – all of which Ryleigh is on. When Ryleigh experiences a severe flare like the last few months – traditional medications do not help. But, she is receiving one of the best medications to reduce her symptoms – Remicade. She will get her 3rd treatment tomorrow with double the dose. We hope the third time will be a charm!
Traveling to Vancouver with only my purse and some smuggled underclothes, being without some basic outfits was a bit challenging. It is hard to have intellectual conversations with the medical professionals when it feels like I have been camping out for days! But the benefit of social media such as Facebook has me connected with a classmate from my high school days in Osoyoos. Yes, that was over 25 years ago! She messaged me through facebook and offered to give me a ride to get some basic changes of clothing. We went to the Costco in downtown Vancouver – a very different experience from the Prince George Costco. But, I found some pj’s, some comfy pants, and hoodies. I am now ready to manage in the hospital – no more camping out clothing strategy!! (They frown upon rinsing, washing by hand, and hanging clothes in the hospital room!) Thanks so much Michel, not only was it helpful but a great chance to reconnect and learn about all the interesting things you have done with your life. What an angel you were to help me out.
Victory # 5
The scariest thing about the last 6 weeks or so has been Ryleigh’s reluctance to eat or drink. She feels so miserable that the thought, smell, or sight of food is not something she wants to deal with. Over the last week she has lost 4.5 pounds – something her body cannot lose. The doctor told her today that if she cannot eat or drink more on her own she will need to have a feeding tube – something that she is very scared of and I will admit it makes me feel a bit squeamish. But, even if she only uses it for a few days it will help her get some energy back. All day I have been asking her what she would like to eat, can I get her something yummy to eat – brownie, burger, sandwich, yogurt, ice cream, jello, cookies, apple, fruit cocktail, NO NO NO! Frustrating….but, the wonderful thing about BCCH is that they let their patients choose what they want to eat. She chose her own supper and when it arrived she ate! Granted it was only 4 bites of shepherd pie and a few spoonfuls of peaches but she ate! It is a start – a small victory.
When you are immersed in the poor health of your child – whatever it may be. It can overtake all of who you are feeling like the weight of the world is on your shoulders. Everything can feel unmanageable and that things are going to spin out of control. When the spinning gets faster, I have learned that you need to stop and take a breath and think about the small victories that happen in a day. Each small victory leads to another and then it ends up being a truly victorious day! So I end the day realizing that it was a good one – I look forward to the small victories tomorrow! Until then…..remember to appreciate the small victories in your world.