As we have been at the hospital over a week now — we have established a new routine that we seem to rely on to make it through our day. The routine has changed a bit since Tim has left Vancouver to head back to Prince George and then Hinton. Now the morning routine of getting chocolate chip pancakes for Ryleigh each morning from IHOP will have to change to something else.
Ryleigh’s fluid and food input and output seem to be the central factor of our routines. Now that prednisone is flowing through her system her appetite has increased by almost 1500 calories. So eating is a focus for her — the trick is finding what she is craving to eat. I miss a kitchen where I can cook and prepare food for her that is yummy and nutritious. There is a kitchenette across the hall from us but cooking with a microwave and a toaster oven is just not the same.
Our daily routines such as laundry, shopping, school work etc….don’t start until the teams of medical professionals visit the room. You don’t want to be out of the room when they make their visits. I am continually impressed by the amount of collaboration happens. The teams come to discuss Ryleigh’s issues. They discuss, disagree, set goals, and then administer the care that is needed that day. Her care is based on observations, discussions with Ryleigh and myself, discussions with the medical staff that support her, relevant and up to date research and methods, and application.
We tried to get Ryleigh up and about today. She had a rough morning and was in a bit of pain with her stomach and also hip. I got her to venture down to the gift shop for a short walk, then later to the cafeteria, and some other kids were in the Teen Room and she ventured there. This day totally played her out…she was fatigued and light headed tonight. Tuckered out…but hopefully on the mend.
Today the doctors conceded that the remicade treatment is not working and this treatment is not one for her. She has also been taken off all previous medications. There are two more options before they opt for surgery:
Option 1: Prednisone, Methetrexate, and medicated enemas (from nurses) to deal with the disease in her lower colon.
– she will be slowly tapered off the steroid (prednisone) over the next couple of weeks and will start methetrexate at the end of the week. It is a chemotherapy drug and It is supposed to maintain the success that prednisone is currently showing. We won’t know if this is successful for awhile.
If option 1 does not prove successful then
Option 2: Humira. Which totally freaks Ryleigh out. It is another type of medication like Remicade just works very differently. It involves a needle in the leg weekly or biweekly.It is also very expensive and special approval has to come from the government in order for it to be used.
If neither of these work — then the surgery is the last option.. the stress is not over. It is a waiting game. Hard on all of us but really hard on Ryleigh as she has been told for a year and a half now that each treatment will work…and it has not happened. She is a bit disillusioned. I can’t blame her.
I know that she will get better — it just takes patience and time. It is a bit disconcerting when the doctors each time they come in look more and more perplexed and frustrated. But I know they are doing everything they can to help her be in a long term remission that is not steroid based.
Tomorrow, I am going to try and get Ryleigh out of the hospital for a walk outside. Perhaps get her to go and see our room at Easter Seal House.
I am working on trying to establish a routine for myself to maintain my level of togetherness (some call it sanity!)