Today was an interesting day. Ryleigh did not sleep well last night. She did not fall asleep until 4 a.m. so getting up for meds and visits from doctors and physiotherapists this morning at 8 a.m. was not the most positive time for her — she was a grumpy bear!
I don’t blame her – not having much sleep and then having to be motivated to exercise, take meds, and talk with doctors would make anybody grumpy.
Ryleigh’s three main team of doctors showed up today to discuss her progress.
She has improved and is definitely stable. Her heart rate has improved slightly with the blood transfusion as her hemoglobin has gone up a little bit. She is not out of the woods and hopefully with her IBD bleeding stopped right now because of the prednisone she will be able to build up her hemoglobin levels. Ryleigh and I are learning how to administer her enoxaparin (blood thinner) twice a day. I learned how to put the medicine into the needle. The nurses make it look easier than it is — lots of little steps but I was given some practice materials because tomorrow I will be injecting the meds into Ry for the first time.
Ryleigh had a visit from the physiotherapist today – it was not the best experience for her. Ryleigh is trying to manage her leg discomfort without medications. The exercises created some pain not only in her muscles but also in the area of her leg that has the clot. It was difficult for her and she got upset and very frustrated. She also is realizing that her left leg is feeling different than her right – she says it is heavier and part of it doesn’t feel like it is all there. The physio did not really listen to Ryleigh and understand her pain level. As a parent it is a bit frustrating because one group of doctors tell us that she will experience pain from the her leg and to respect the pain. For Ryleigh’s first physio lesson it was quite an intense experience and she did not like it. After the session her nurse came in and set up a plan with us and it was much more successful. She walked part way to Starbuck’s even though her left leg was sore. She had a great attitude and worked at trying to get some exercise. Tonight she also walked downstairs all on her own without a wheelchair. Her leg was sore and numb but she made the whole trip.
Ryleigh’s neurologist came today and they are happy with her progress. They are leaning toward her brain lesion being inflammation. They feel this is what it is because they saw no signs of a clot, it is was vasculitis she would not be recovering so quickly, and if it was an infection it would not have improved. Their hypothesis is that because she was on immusuppressants already that helped the inflammation in the brain to be smaller than it was. Whew….They will not be assessing her as often as before. We are expected to watch for any changes. She is also supposed to monitoring herself for any changes – dizziness, clumsiness, weakness in limbs and face, eye changes, headaches…etc. The neurologists will need to keep a close eye on her too – if there are any differences in symptoms they will have to do another MRI.
Her GI doctors are satisfied with her stomach and intestine healing. They understand our worries that her healing of her Crohn’s/Colitis is steroid dependent but we will not know if she has truly healed for sure in a couple of months as she needs to be slowly tapered off steroids. They want to try another treatment of remicade – as they are not sure if the remicade did help this last time or not. Hopefully she will respond and not have a flare again.
So, it is evident that there is no decisive reason for her issues with the clot and brain lesion; the idea is that it is part of her inflammatory bowel disease and these were rare symptoms of a serious flare.
Her GI team in consultation with everyone else has decided that she can be transitioned into a discharge from inpatient hospitalization. Moving around on the floor is not necessarily the most positive motivational experience and so having a real life motivations to move and build her stamina will work better. We are not sure when this will happen but it should be in the next few days.
I will admit this scares me. Mostly because of the unknowns with her symptoms. Right now her heart rate even resting is still high, her tummy is still distended and seems to be getting bigger, and her white blood count is high. Being on the ward with all of the support and help has been such a relief. I know that she should not clot again due to the blood thinners. But what caused the clot to begin with? My next concern is the brain lesion. We will need to be vigilant to watch her for any changes. Then of course there is the IBD flares that she has been dealing with..the original reason we have been down here. The prednisone has helped settle her system – but if she were to begin to bleed from the gut again it could be serious because of her being on the blood thinners.
As her mom, I continue to be in a state of worry…I trust the doctors but still feel like she is not in a true remission. It seems as soon as we get comfortable something else happens
Admittedly, I am in a state of stress and am feeling overwhelmed. I guess I felt that all of her issues would be solved before we left here. However, that is not going to happen and she is going to be living a life with the issues of chronic illness. It means that she needs to be aware of her body and what it is telling her. What a load for a 12 year old! I hope as I move through this with her and Ican provide the parental guidance and support she needs.
The support and kindness of all that love and care for us has helped me during these difficult times. I am looking forward to leaving the hospital as I have not left the hospital grounds for almost two weeks. I know Ryleigh is keen to come home but we will need to be here for a while longer to be certain she is stable and to receive her next Remicade treatment.
But, we can’t wait to get home!