Ryleigh woke up in severe pain in her weakened left leg last night. With some pain relief and heat compress on the leg as she tried her best to go back to sleep. Me on the other hand could not sleep as I am going to the blanket warmer every 20 minutes to get her a new compress.
As it is Sunday the hospital is a little more laid back which was a bit of a reprieve earlier this morning. However Ryleigh has been very busy this morning.
She has had the kidney doctors in to check. She has a steel bladder (her words) but apparently this is not a good thing. So more trips to the bathroom – which is a good thing as it gets her up and mobile a little more often.
Then the GI team came in and actual good news – the prednisone is working and her Crohn’s has settled a bit. They are going to keep her on the prednisone for now until we get some more information about her brain inflammation. The GI team are her lead team because she was admitted under her GI doctor. They are consulted on every thing that goes on with Ryleigh. Because she has had pain in her leg – they examined it and noticed it is quite swollen.
So another test for Ryleigh today — an ultrasound on her leg. They said it could be one of the following:
1. Localized infection — but she has had no fever, so this does not seem likely
2. Tone of area has decreased –
3. Blood Clot because she has been immobile with that leg and bedridden.
Ryleigh also had her lumber puncture today (spinal tap). I continue to be amazed by the talent and the expertise of the staff here. The precision and team work needed to perform this procedure had me in awe. Luckily Ryleigh was so calm because I could watch the precise and intricate way they gathered her spinal fluid.
Ryleigh continues to be outstanding. She was brave and did not move – the medicine they gave her was really effective.
We will know the general idea of what is causing the inflammation sometime today such as infection, cancer, or another condition in which I cant remember the name- mylti….??? This will only give a start the other tests of the fluid will take a few days or more. But this will give a starting point for medical care and for emotional preparation.
Ryleigh is in really good spirits and as she talks with the team of doctors she is now familiar with them and will joke (she has her mom’s quirky sense of humour) with them. She is scared (rightly so) but is being brave and strong dealing with each thing as it comes. She is fiercely independent wanting to walk on her own using walls etc to help her, refuses help to get back in bed as she struggles with moving her left leg. She does not want me far away from her – so I have been keeping to the third floor. If I leave the room she will say Hurry Up Mama – dont tak too long. Luckily family and friends are helping me with stocking our shelf in the 3F fridge, picking up things for me, and doing other errands.
I am aware of all the kind prayers, thoughts, efforts, and support from so many people in our lives. I do appreciate the comments, reflections, e-mails, and facebook messages. It helps keep me grounded and feel the touch of the outside world. I do like to hear about what is going on with your families, work, etc. as it keeps me realizing there is more to life right now than medical stuff. Thanks, Kelley for helping me realize this when you talked with me about your new dog. It was nice to have a real conversation.
I will post later today once we get more information. This parenting an ill child thing is a full time job and I am needing to keep a day plan for all that we have happening and doing each day. But, I totally find writing a good way to channel my thoughts and stimulate my brain. Thanks for reading and being part of this journey.