This post title was brought to you by Ryleigh! She came up with this at 10:00 tonight after the hardest day she has had yet.
A lumbar puncture
An ultra sound of her leg
An echo cardiogram of her heart
A second I.V. in her foot
And the harsh reality of what is happening to her body
She is able to eat soft foods again and luckily she had a tub of chocolate ice cream to dive into.
We got some more information — trickling in a little bit at a time. Ryleigh has 5 main teams of doctors working for her: gastroenterology (GUTS), hematology (blood), neurology (brain), nephrology (kidney), and cardiology (heart). Some issues were identified but there has been few explanations for why.
1. Lumbar puncture preliminary results: there are no markers in her spinal fluid for an infection and inflammation. This is good news. There is still concern how her brain became damaged. She has lateral medulla syndrome. This is in the brain stem – not in the cognitive processing areas. This is why she has the palsy in her face and the numbness and difficulty with her left leg. She is also having some difficulty with chewing and swallowing. There is some difficulty with her right hand also. She will need some intensive rehabilitation to help here learn how to manage these deficits. We will have to wait as they investigate further what has caused this initial damage. We are not sure if there will be more damage in the future. They will be doing another MRI later in the week to see if there are any changes and maybe to look at it a different way. Unfortunately, cancer is not yet excluded and of course this is a sensitive issue for our family but they neurology team will let us know as soon as they know what is happening.
2. Her ultra sound for her leg was very interesting but it showed some scary results. Ryleigh has ONE blood clot that goes from just below her belly button in the pelvic area all the way down past her knee. This type of clotting is not typical for youngsters. So, her teams are consulting with an expert from Vancouver General Hospital who treats adults with this same condition. Tonight they are treating her with a blood thinner – this does not break the clot apart or help shrink it. It just stops the clot from continuing up the vein. The concern about her right now is two fold. First they are concerned that if they don’t keep track of her blood levels she could bleed out – especially because she has Crohn’s. Next, there is a concern that this clot will break off and go up to her lungs. Apparently this is where the vein would travel to first. Of course they hematology team believes that this must be what caused her brain damage. However, this clot could only have gone to her brain if she is one of many who have a small hole in the heart by the aorta. This is the only way that a clot could get to her brain. Enter – cardiology. She has an echo cardiogram. The doctor informs us Ryleigh does not have a hole in her heart.
Blood clots can occur with people who have immune disorders. But she may have a blood disorder which they would not be able to determine for 3-6 months because they have to get this clotting issue under control.
3. Gastroenterology – all is good now that she is on prednisone. They are going to continue with this therapy until the rest of the issues are sorted out. Crohn’s disease is on hold.
4. Nephrology – Kidney are fine, needs to not have a steel bladder!
How is Ryleigh holding up: She finally had a bit of a melt down. Getting an IV in her foot did not make her very happy. She hears about what they learned today and she got mad. I am so glad that she finally got mad and frustrated. She was trying to be strong all the time which is not realistic. Tonight she was working at drawing and printing with her left hand. She is determined that she will learn this so she can write her stories. My goodness….take a break child.
Tonight she will be monitored very closely. Actually she will be monitored with a one on one nurse.
Tomorrow they will be making decisions about what to do with the clot. They may be putting a filter into her vena cava so that a clot will not travel up to her lungs. They also have ways to take out the clot. All are serious but we have the best people on her team.
Tonight will be long….we have to keep an eye on Ryleigh. Tomorrow will be more visits from all the doctors. Maybe we will get more information to start figuring out what is going on.
Until Tomorrow! Oh it is 12:35 I guess it is today!