Ryleigh has had a good night. She made it through with flying colors. Keep the positive thoughts and prayers flying her way -it is working!
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!
Ryleigh has shown me the importance of the small moments in a day that are joyful and happy.
She is still embarrassed about her palsy on the right side of her face but still cracks the funny jokes, smiles her half smile, and gives me a wink — so uplifting.
Last night she was given permission to eat soft foods only but no liquids. She took total delight in eating chocolate ice cream right from the tub. She came up with this very precise way of eating it. Scooping around the edges so it was slightly soft, then making it even along the top as she ate. She was taught how to swallow more effectively as it does not come automatically now for her. She does each bite with purpose and correctly. But, each one is pure joy and deliciousness to her because this is the first solid food she has had in days. Now, to be honest she would rather be jumping into a big plate of cheesy nachos but she cannot have solid food until we know what is going on and she has had a swallowing assessment. She is trying to come up with a way to make nachos and cheese a soft food — she has decided putting it in a blender would not work.
The most precious moment I have had with Ryleigh the last few days was last night. She wanted to bathe. It was the first time Ryleigh has really tried to use her leg and it saddened me to see her trying to think through each step. Lifting her leg naturally into the tub was very difficulty and her independent streak was trying to get it to lift – but all the will and determination was not successful and she had to ask me for help. I bent her leg and put it in the bathtub and she proceeded to go in…..all I hear is a huge sigh of comfort and relief being in the warm bath. They have a detachable shower head so I washed her hair and then I basically moved the warm shower around to help stimulate her nerves. She was in utter bliss – enjoying the soothing feel of the water, sighing and telling me how much she loves me. It was a beautiful moment and the pride and love I felt for her was infinite.
Whatever happens……it is small joys like this that make everything manageable.
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.
We, including Ryleigh, have met with her team of doctors and nurses. She had 7 medical professionals with her today to share what they know so far. The neurologist first spent about 20 minutes explaining to us (without Ryleigh)what has happened in her brain based on the 2 MRI’s she has had. He asked us if Ryleigh would want a similar explanation. Yes, of course.
I was so impressed by the manner in which he explained her MRI. Ryleigh was so focused and strong. She did not cry or get mad, she asked questions and then shared that she was scared.
Here is what they have told us and what is going to happen next:
Ryleigh’s first MRI showed some sort of lesion. They needed to do the second MRi to find out what it could be. Yesterday they thought the first MRi was evidence of a stroke but after the second MRI and consultation with the neurological radiologist they have determined that she has a type of inflammation on the mid to top part of the brain stem. They are confident that it cannot be a tumor which is a relief,
However they are not sure what it is, inflammation like this can be a variety of things such as infections, auto immune issues, or a cancer of some sort. The intriguing part is that the type of inflammation they think it is should not of happened or would have reduced the inflammation because she is on the exact medication she has been on for her Crohn’s disease. She has also not had a fever, vomiting, or other typical systems.
The next steps include:
A lumber puncture (spinal tap) to test for a wide variety of infections, check the spinal fluid for abnormalities.
Consult with other teams: hematology and cardiology.
She could get her lumber puncture tomorrow and if not for sure on Monday. Right now she is stable so they feel they can wait as it is the weekend. If she starts to show significant changes they will do it earlier. Right now she has the paralysis on the right side do her face, numbness and a heavy feeling in her left leg, chewing and swallowing issues, as well as some limited use of her right arm/hand and dizziness. She is a little confused especially when people are talking to her as she has a hard time figuring out what they are saying. Ryleigh is pretty well bedridden. She finds walking difficult and tiring. Her longest walk is about two meter and that is with assistance.
You can imagine how challenging it is to see our bubbly Ryleigh be so different. As a family we area trying to be positive.
It is a puzzle right now and we will have to wait for more results and information.
We are keeping an eye on her for any changes. She is in fairly good spirits and we try to distract her and help make the day go by faster.
Thanks for all the positive words, messages, and prayers. We appreciate it!
So Ryleigh’s second brain MRI is finally done. Her team of doctors will meet tomorrow to discuss the results. We have been told that she will be needing more tests in the next few days. She will be visited by other teams of doctors to rule out things.
This seems to be the motto of our experience. There is a rush to get things done and then we have to wait for results. I don’t mind…it means that they are being thorough.
Ryleigh needs to have another MRI today! It should be soon….they want to do this one with the dye to see her brain better. Guess they should have done it yesterday. We will know more news later….I don’t know why she has had so many MRI’s..she already has a magnetic personality! Love ya Ry Ry!!!!
Ryleigh has had 8 IV’s in the last two weeks and she is so tired of needles. I continue to be astounded by her courage. Today continues to show me what she is made of! She had her braces taken off, isolated in her room, no food, clear fluids only, MRI, then surprise, surprise, another IV!!!
The hardest part today that made me tear up and then have a good cry later was when she was excited to see what her teeth looked like without braces. As she looked in the mirror she had an expression of disbelief and then sadness. Tears welled up in her left eye as her right is having difficulty with tear making. She did not truly understand how different her face looked. It was so disheartening to see the fear in her eyes that this was scary and she was dealing with something different then the Crohn`s.
No news from MRI…hopefully that means good news. Tomorrow will hopefully be a day of answers as we should be getting most of the test results back.
I will keep you posted.
Okay, my reflective daughter is wondering if God is testing her. I said if he is, you are acing the exam!
At the end of last blogRyleigh and I were having a very disruptive sleep last night with frequent visits from the nurses to check her vitals and see what her cognitive status was. Then the day consisted of numerous visits from various groups of doctors from Neurology and GI. Ryleigh has been isolated in her room and they have told her she cannot leave it until at least Friday – they are hoping to get results from some of the virus tests to see if a virus caused this palsy. This is a picture of her today. She is a bit more droopy in the eye area.
Ryleigh’s palsy has not improved but it has stayed in the face. Her right eye is drooping more but she has been working on trying to widen her smile. She has to wear a patch when she is sleeping because her eyelid does not close fully and they don’t want to her eyes to dry out and damage her cornea. She worked with her nurse to design this unique patch to help her eye at night.
Ryleigh is scheduled for an MRI tomorrow to look at her brain. The interesting part is that for this MRI she cannot have it with her braces. So, tomorrow morning she is heading down to dentistry to have her braces removed! I wonder if they would throw in a cleaning too — she has missed a few cleaning appointments. I contacted her orthodontist and they said go for it as she is close to having them finished anyway. They told us that they will put them back on and take care of things when she is healthy and back at home. No charge to have them redone! Whew!
The scary part today was that she was having difficulty chewing and ended up choking a couple of times. She was determined to cut her food in small bits and slow down and chew the best she could. To have Ry interested in eating and drinking for once is amazing! However she was assessed on drinking some water and choked a bit. It was determined that it was the safest route to have Ryleigh not drink or eat until they determine the extent of her palsy through an MRI of her brain and nerves around her face. That was all well and good but they forgot to tell us and as we were cutting up her cheese pizza into little bits the nurse interrupted us and gave us the news that Ryleigh could not eat or drink. This was very upsetting to Ry as the prednisone gets her to eat almost non stop and tells her brain that she is hungry. She had a mini melt down and then proceeded to go on with her night.
Ryleigh’s demeanor has changed slightly and I am not sure if this is because of the stress, her Bell’s Palsy, or medications. As they day went on she seemed dopey or intoxicated. At one point I asked the nurse if they gave her an ativan or something…she was a little out of character but it was quite endearing.
As her mother it is challenging to see her struggle with trying to be positive and not feel let down. She handles each bump with such dignity and courage but I can’t help think that she is discouraged and wonders if things will get better. Her spirit has been beat up a bit. We ended the night on a good note….she had a bath and I helped her relax, it was very soothing for both of us. Reminded me of the many times I helped her when she was young. It seemed to help her as her heart rate has been zooming up to numbers like 145 and 155 per minute and she was lying down. But after the bath it went down to 110ish. Much better!
Tomorrow brings another day with more examinations….but once again, Ryleigh will continue to be resilient and persevere. I am so proud of her.
This blog has focused on Ryleigh’s and my experiences. I wanted to share some stories about Chloe as she has been around for most of the happenings.
Many of my friends and family have heard the stories or even experienced the struggles Chloe has with getting out of her comfort zone. She is cautious and a thinker and does not jump into anything quickly. This is a good quality and I respect her for it. Chloe spent the first week Ry was in the hospital with her dad. But as we headed down south and we got farther away – she missed her sister and her mom. We decided that the best thing for our family is to have Chloe stay in Vancouver with us. However, I informed Chloe that she needed to understand that Ryleigh’s needs and sometimes wants came first. She also needed to be helpful and kind to her sister.
Chloe has been such a great help. She listens to Ry’s grumbling, endures watching TV shows such as CSI, Bones, Top Chef, and Chopped, and will run errands for Ryleigh whenever necessary.
She makes Ryleigh laugh – usually at my expense but I don’t mind.
Chloe has definitely stepped up…she is doing many more things independently. She stays with a former NVSS student, Lisa S, at Easter Seals House while I sleep at the hospital with Ryleigh. She will run errands around the hospital checking out menus, going to the bank machine, buying lunch, getting coffees. This may not seem like a big deal but for Chloe it is — she has always been shy and reluctant to do these things. Well, not anymore.
Chloe is also trying to catch up on her studies. She goes to the schoolroom to work on projects for her EBus courses. She is setting some goals and trying her best to get work done.
Even though Chloe must miss her friends, Pony Club, and other routines…she is not making it evident during her time. She is upbeat, positive, and a real pleasure to have around. If she is feeling overcrowded in the hospital room she will venture to the teen lounge and talk with others, play games, watch t.v. and basically interact with people she doesn’t know.
Thank you Chloe for being such a responsible, trustworthy, and dependable daughter. I am proud of how you have dealt with your own anxieties and insecurities to manage during this stressful time.