Monthly Archives: January 2013

Thumbs Up!???

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!

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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!

A Hopeful Day!

This is how our day ended today:

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Ryleigh with her rosie cheeks. She is starting to show the side effects of prednisone – her cheeks are puffy. She hates that but I think it makes her look healthier!

Ryleigh chooses to do artwork especially painting to relax as she had another busy day.
The morning started with bloodwork early in the morning. They are checking her levels for clotting and her basic counts especially to see if her white blood cell count and liver enzymes have decreased.
Then she had to go and have an ultrasound of her abdomen. It continues to be distended and there are dark blue veins all around her abdomen. Thankfully, her ultrasound did not show anything. Which does not explain why her tummy looks the way it does. But no borrowing trouble here…time will tell about her tummy.

Ryleigh's afternoon was spent getting a blood transfusion. This did not take much effort on her part she just sat and watched TV while playing on her IPAD. The doctors came by and said that the blood transfusion will help her get some energy back and get her body back on track for getting better. Her cheeks are much rosier tonight but she is still very fatigued. She had a long nap from 5:00-7:00 but that is good for her.

Tonight Ryleigh had one of her IV lines taken off. Her heparin is now going to be injected subcutaneously (underneath the skin). They placed a port in her leg to help reduce the number of pokes that she will have. She will need to have two injections a day for 3-6 months. This type of heparin allows for more freedom as she is not attached to an IV and does not need daily blood tests.
This is a picture of her "port":

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We have spent 4 weeks in hospital – it has been quite a journey and the unknown about what happens next with Ryleigh’s health can be stressful. However, I learn to take each moment as it comes, NOT research too much on the internet, and try to get as many cat naps as possible. Sleep in the hospital comes in bits and pieces. The maximum number of hours that I have slept without being interrupted is 4 hours – much like when my girls were wee babies. I am getting used to it and working on making sure when there are quiet moments to rest.

Looking forward to hearing what all the teams have to say tomorrow as they are meeting together to discuss Ryleigh’s progress and further plans to get healthy.

Another Blip on the Radar…

After a quiet weekend this was a bit more of an active day. Ryleigh had visits from some of her medical team. Her leg has reduced in swelling on her bottom half of her leg. Her upper thigh is still quite swollen but the pain has reduced significantly. Her blood clot will take months to get smaller but it is not causing her a lot of pain. Her heparin treatment still continues but in a while she will be taken off of it and put on a different type of heparin that involves injections twice a day. We probably won’t start that until Friday when Ryleigh’s favourite nurse returns back to work. I know Ryleigh will be quite scared about the injections and will need support from somebody she trusts.

The last couple of days Ry’s tummy has been getting bigger. The first day we thought it was just the common bloating from the prednisone but over the last day/night her tummy has gotten bigger. There is no pain but just a tummy that is tight and quite distended. There was not a concern about it until it started getting bigger AND there was a change in her white blood cell count (almost double the amount and her liver enzymes are high. So, tomorrow she has an ultrasound of her tummy especially her liver.

Ryleigh will also be getting a blood transfusion – her hemoglobin continues to be low. Also her heart rate is very high — her heart rate goes between 127-174. The median range is 147. They feel this is because her hemoglobin is low. Hopefully the transfusion will help her want to be more active and reduce her heart rate.

Tomorrow is another day — we will see what happens.

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The love of a dog…Jakob

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Our Jakie is such gentle and kind dog. I would have never thought that when Chloe showed me the website with Jakob as a puppy and convinced me that he would be a good addition to our family. Little did I know that visiting with Jakob would be the incentive for Ryleigh to get out of bed and her room. Twice this weekend she has ventured out of her room and downstairs to spend time with Jakob for a second tim today.what a joyful time. He was well worth the late night walks in the snow, the chewed up toys, pencils, and other things, and all the other little inconveniences. Thanks Chloe for convincing me to get Jakob – but no we are not getting another dog!

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Ryleigh’s hemoglobin continues to drop – they are taking a fair bit of blood each day to monitor her PTT levels and her system is having a hard time making up for lost cells. Hopefully that is the only reason the hemoglobin is lower. This results in her stamina continuing to be low also. She feels fatigue and exhaustion after any kind of exertion. They are considering a blood transfusion for her to help kick start her system and help her recover faster.Ryleigh has been bedridden since the middle of October. The doctors said that it will take slow steps to help get her back to a normal energy and activity level.
There is talk about rehabilitation activities starting to get her to increase her stamina. The goal is to be able to walk for more than 5 minutes at a time in the next few days. Ryleigh needs to develop her lung capacity again. She has lung exercises to do with a respiratory exerciser. Her goal is to get all three balls up in the exerciser. She can confidently do one right now!

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The team of doctors are going to be meeting on Wednesday to come up with a detailed plan for Ryleigh’s continued recovery. The layers of care have been complicated. There is still great debate about if the three things are related – brain lesion, clot, IBD. Or are they three separate issues?
We need to know because we have to make sure they don’t happen again. Patience is very important.

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Calm Day…Finally

Today was a much calmer day. Ryleigh has stabilized and is more animated and cheery.
We spent the day hanging out – being a Saturday we did not have as many visits from doctors as during the week. There has been a switch over of doctors, fellows, and residents for most of the teams Ryleigh has had looking after her. We spent time today reexplaining what Ryleigh has gone through. There are still no definitive answers to why she has had some of these serious incidents on top of her IBD.
Ryleigh had another visit from Rheumatology. They are responsible for generalized autoimmune diseases such as arthritis, lupus, and vasculitis. This team was called back because of Ryleigh’s brain lesion and using inflammation and an autoimmune issue with the vessels in her brain. Rheumatology does not yet see the evidence of this explanation in her MRI. The only way they could know for sure would be an angiogram or brain biopsy. Because Ryleigh is improving and not digressing they do not feel it necessary to do these types of procedures (yet). Rheumatology is going to spend some time investigating resources and information to see if there is connection between all three events that Ryleigh experienced.

Rheumatology uses the drug Remicade regularly with young patients. I asked about the side effects of this medication and would Ryleigh’s symptoms be side effects of Remicade. She does not believe so – Ryleigh has only had 3 treatments and typically it would take a longer time for side effects to occur.

Neurology did not come by today to discuss the second MRI of her head. The only information we have gleaned from this MRI is that her lesion has not grown and it has improved. This is also evident in her behaviour and improvements physically. We are hoping that on Sunday they will show us the second MRI and explain what is happening.

Ryleigh’s leg swelling has decreased significantly. She is a bit more agile and as a result her pain has decreased. She says that it is more uncomfortable then painful. Ryleigh still feels a numbness in this leg. This is most likely due to the brain lesion then the blood clot. She is still on intravenous blood thinner and the plan is to have her transition to injectible heparin next week. Once her levels get consistent about the amount she needs they will be able to move to this type of medication. They are still concerned about bleeding but we are watching for this.

Thanks to Dan, who has made the journey down to Vancouver, Ryleigh was motivated to get out of her room and head downstairs to the front entrance. She was in a wheelchair nevertheless she was out of her room for something other than a test or procedure. Dan has been taking care of our buddy Jakob – our goldendoodle. Jakob is special to all of us in different ways. For Ryleigh, he is a source of comfort and joy. At home, Ryleigh will spend time with Jakob to help her relax and help with pain and fatigue. Jakob is so soft and furry he is like a live stuffed animal. Dan brought Jakob to the front entrance today and Ryleigh got to spend time with him. Pet therapy is very beneficial.
Ryleigh even got out of the chair for a bit. Yahoo!

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We have been here for 3 weeks and have started to make room 11 on floor 3 unit F our new home.
It is neat how we make the effort to make our space somewhat comfie.
This is my sleeping area – Chloe at times will stay for a sleep over. When she does stay over.I sleep in the lounge chair which is surprisingly comfortable. We are still getting up frequently in the night for vital checks and such. Last night it was blood work and beeping IV pumps and heart rate monitors.

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We are lucky to be across from 3F’s kitchenette. We have a shelf in the fridge for our items and then use of the basic equipment – microwave, kettle, and toaster oven.

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The best part of our room right now is the wall and door that Ryleigh faces. Thanks to the students and staff at EDS for the lovely hearts and messages. What a great way to show such positive love and energy.

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Daily Life has changed…and progress update

I apologize for the delay in my writing. It is amazing to me how things get busy yet it feels like I don’t accomplish much. Our daily routine is so much different but yet it surprises me how patterns develop in the way we behave.

Typically I am up sometime before 7. I have always been an early bird but with disrupted sleep I tend to sleep until 6 or 7. It all depends when Ryleigh’s blood work is — if all is good it is around 8. If she needs her PTT levels (time it takes for the blood to clot) checked then it could be at 6 am that she has these tests. I try to get up and make myself a coffee, relax for a few minutes and then slowly get Ryleigh up and ready for many visits from numerous doctors. She is so used to the neurological exam she has informed a few of the residents if they have missed a test.
She then eats breakfast — which takes a bit of time. She needs quiet with no distractions and I have to supervise her making sure she is doing the techniques taught with her and helping her if she sputters or chokes. This can take a fair bit of time — it is challenging for us as we are all talkers and to sit quietly during bites is hard.

The morning can be busy with tests, chats with doctors, connecting with other families on the floor and now, helping Ryleigh get out of bed and manage little walks or outings. She is still very fatigued and in pain so getting her up and about is difficult.

In the afternoon, If needed more tests, time to clean up the room, get errands done. If lucky, there is time for a shower. I am usually delegating people to run errands out of the hospital as I am reluctant to leave. And Ryleigh is very hesitant to have me leave the room let alone the floor. We also usually get visits from the doctors and residents that didn’t make it in the morning. The afternoons are times when there are activities for Ryleigh and Chloe to do.
On Thursday afternoons there is an expressive arts time – Ryleigh ventured down to the Teen Lounge and painted. She got to hang out with other patients and their siblings.

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Evenings lately have been a wind down time. However, there are times doctors come by to chat about results and other information or preparing us for the next day tests or procedures. Evenings are my chore times. I try to tidy up our room – it is quite small and things need to be put in their proper place. This is the time I try to get our laundry done – laundry never ends even in the hospital.
The nights are usually our quiet times although the nurses worry about 10:00 as Ryleigh has typically had some kind of event. Luckily, this has not happened the last two nights. Although Ryleigh is a night owl I try to get her to bed at a half decent time. Our nights have never been the same as things change. For example, tonight she has to have more blood work because her PTT levels are not stable. The Heparin thins her blood and so the PTT is used to assess how fast her blood clots. It important these levels are stable (within a certain range) because if they are too high her blood may clot somewhere else or if too low she could bleed. They changed the amount of Heparin and will test her again at midnight to see if she has stablized. We spend our evenings doing things that help us relax; Ryleigh usually plays on the ipad and watches TV – sometimes she will paint. I tidy, do laundry, research any new information or relearn old information the doctors have shared with me. I find it challenging to keep up with all the things happening to Ryleigh, learning the vocabulary, and keeping track of acronyms, lingo, and medical talk. Being able to listen to the doctors and ask questions helps me make more informed decisions about her care.
Lastly, I usually will sit down and write this blog. This is a picture of my workspace – being adaptable is so important so I tried to make a space that will allow me to reflect. I find the writing a time to sort through and process what has happened for the day. It is quite therapeutic and helps me put the days events in a file so I can deal with the next day’s happenings.

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PROGRESS UPDATE
Ryleigh has shown some improvements. She works hard to use her right face muscles. Her smile is becoming a bit more symmetrical. She is learning how to eat more effectively. She still finds chewy, sticky, crunchy, and hard food difficult to eat and so it is not in her diet yet. She is so frustrated because the prednisone has made her incredibly hungry but her food choices are limited.
Unfortunately, right now the best food for her is processed food as it is…well basically processed because it is easier to chew. Ryleigh has some subtle fine motor coordination issues in her right hand. She has had difficulty manipulating her ipod and finds an ipad easier to manipulate. As well, she tried to use chopsticks tonight and realized that she could not do it anymore and it was really hard to concentrate to use them. Ryleigh still does not have full feeling in her left leg. It is numb. We are wondering if the numbness is because of swelling from her clot or the brain injury.
Her neurologist reinforced with Ryleigh that the area of the injury is coordination not her thinking brain.
The second MRI was done today. The neurologists came and told us that the first reading of the MRI show signs of improvement. It is not resolved but the MRI supports the physical improvements of things like her smile and ability to life her eyebrow. On Saturday they will sit us down to look at the actual MRI and see what is happening in her brain. Luckily the area has not grown. They are still not sure what has caused it but are strongly leading to inflammation of some sort. They are wondering if this is because of systemic inflammatory disease including her IBD.

Ryleigh had a second ultrasound of her leg to see if her clot has stopped growing. Luckily it has stopped but it is still the same size. It still startles us that her clot runs from below her belly button all the way to below her knee and it is one whole clot not a series of clots. They cannot give Ryleigh the medication they give to most kids that have clots. It takes the clots and basically breaks them apart – but this medication is too dangerous for children that have had bleeding problems. Ryleigh’s IBD has caused her to bleed for almost a year and a half so it is too dangerous for her to have this medication. They are still tossing the idea of surgically removing her clot. Although the time (for some reason) is running out on this option. Removing it will allow her to have it gone but there are some complications of the clot staying in her vein. It can cause stretching of the vein and result in long term issues. But, to remove the clot would involve surgery in an adult hospital with adult physicians. Either way, she will need to be on Heparin for 3-6 months and her blood levels will be monitored. They will change the type of heparin in the next week or so for it to be self administered once a day by injection.

IBD – Ryleigh’s IBD is stable right now as she is on prednisone. They want to start weaning her from the prednisone as she is starting to show side effects of this medicine – puffy face, irritable, and glucose in her urine and blood sugar levels going up and down. Her GI doctors want to get her off the steroid as they are worried about bone damage and other more serious side effects. The neurologists would like her to stay on it but they think it is helping reduce the inflammation in her brain. But, the GI doctors are concerned that the brain issues started after she was on the medicine that is supposed to help reduce the brain inflammation. Are you confused? It has been an interesting circle of investigation. We may get some more theories tomorrow!

Small Steps

Ryleigh has been ever more courageous. She has realized that pain management is not about being weak or not “sucking it up”. In fact, she realizes that asking for help and receiving help is a brave thing to do. Ryleigh is now on some managed pain relief and she is more active and upbeat.
Tonight she was tired of the food that we have in our bins in our room. She decided she wanted to go to the vending machine. She got dressed and managed to hobble to the vending machine. It may seem like a simple thing to most but to us it was quite a triumph. She walked and used her weak and sore leg AND she was able to eat a nutrigrain bar using the proper techniques for eating that she was taught….way to go my darling girl!

She is now exhausted but very proud of herself and I am so happy and deeply proud.

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Doctors are certain….they are uncertain!

There was a collaboration meeting today of some of the major teams involved in Ryleigh’s care. They have determined that they know that right now, they are not sure what has caused her medical issues. They are still investigating and that the results are going to take awhile to compile. They have different theories but are still unsure….

1. Crohn’s — prednisone working and she is not having gut pain or symptoms. However, currently her flare up is like a Crohn’s colitis. Her inflammation is in the large intestine. Ironically her blood thinning intravenous medication Heparin has shown in some case studies (the doctors are busy doing research on her!) can be used to help with reducing flares in the large intestine. This might help Ryleigh and possibly avoid bowel surgery.

2. Blood Clot and clotting issues with blood – The blood clot is currently being treated with blood thinners to stop the growth of the clot, filter to keep smaller clots from reaching the upper body, and resting with small movements activities. Her leg is very painful and she is learning to manage the pain in a variety of ways.They are still considering vascular surgery because they are concerned by the size of the clot,(underneath belly button to below her knee yes,one whole clot). Apparently, the clot will take some time for the body to naturally absorb it and they are concerned that the vein walls will stretch and become damaged resulting in long term issues. So we are still waiting to find out. It will take awhile for results on why her blood was clotting — it could be her IBD or a blood disorder.

3. Brain Lesion — her brain injury is still a mystery. They have ruled out a clot and a tumour but they are still trying to figure out if it is inflammation or infection. But unsure what form. They are going to do another MRI on Friday to check over things. She still has the palsy on the right side of her face. She has been working on using her face muscles and her smile has improved slightly. She is using the tips the occupational therapist to help her with eating. We are all learning to follow these tips so that she will not choke. The big one is to not talk or distract her when she is eating. She is eating simple foods that are not hard or crunchy. She has found it difficult to eat some things and is making the conscious effort to try and improve her eating skills. She is scared that she may choke.

So basically, we are not clear about why this is all happening but every medical department except for one is working on her health concerns. It is a process of collaborating, assessment, and decision making.

24 hours with no surprises!!!

We have made it without any new surprises! What a relief. Ryleigh’s pain is being managed. She is much more comfortable and is less irritable. We requested that Ryleigh have a more quieter atmosphere. Loads of doctors don’t crowd her room now. We have lots of discussions in the hall.

Ryleigh’s care is being looked at by a variety of specialized teams and there are often communication issues not for any reason as she has various problems and it is difficult to get everyone in the same area to collaborate.

We counted and she has 10 different medical teams looking at her. Can be a little confusing keeping track of things….but they are trying their best to be accommodating.

Today there is a big team meeting where they are meeting to discuss Ryleigh. One of the doctors is going to see if I can be included.

Ryleigh will be on intravenous blood thinners for at least 1 more week and then moved to different ones. They are not sure what to do with her clot as the traditional medication used to break up the clot she cannot have because she is at a high risk to bleed out. So they are now thinking about doing vascular surgery to remove it. However, they don’t typically do this here. So the specialist at VGH is looking at her results and see if they have the small enough tools to do the surgery. They will let us know in the next day or two.

Her GI doctor said that in the last 20 years she is only the 3rd child with IBD to have had a clot. Very interesting indeed.

Will post after more information when I can.

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Keeping Positive….even when I want to scream!!!

I learned a lot about myself in the last 24 hours. I learned that we all have limitations but they do not define the true essence of who we are. Ryleigh finally settled down to sleep around 5:30 this morning She is struggling physically and now emotionally about her illness. Due to many reasons including her brain injury, exhaustion, pain, and medications she has been on a emotional roller coaster. She has needed me to be her punching bag (literally she hit me and a nurse after her procedures in the recovery room), her cheerleader, her teacher (explaining all that is going on with her), and a shoulder for her to cry and complain too. doctors and medical professionals.
All day her room was filled with people poking, prodding, talking, questioning, and disturbing her. Ryleigh has always been one to value her alone time and quiet time. She is not getting much of it and I think that is upsetting her. At night when all of the visits are done she and I really have down time. I think she enjoys the quiet so much that she tends to keep herself up just to have some normalcy. But last night was very difficult. She would settle for a bit and then get agitated and upset about anything. At midnight her heart rate went through the roof and would not come down. She and I were watching TV and chatting about everyday things she seemed quite settled. Then she started to huff and puff like she had run a marathon. This is a red flag so I called the nurse, she agreed with me, and doctors were called in. There is still a chance for a clot to appear in her body because we are not sure what is causing her clotting issues – even though she is on blood thinner it could still occur.
Ryleigh was very mad and determined that we were all out to get her. She cried, yelled, whined, and cried some more. What was determined is that she is in really intense pain and is not telling us everything. In her grogginess she said that she doesn’t tell how much pain she is in because she doesn’t want something else to be wrong and she should just suck it up! Oh my. So she was given some more pain medicine and finally in the wee hours she settled down and fell asleep.

I continue to be in awe of the talent, work ethic, and intelligence that surrounds us. The women and men who are caring for Ryleigh are so talented and focused. The commitment they show towards Ryleigh and our family is outstanding and I am so appreciative.

Ryleigh continues to be a complex case with layers of issues that she has. She is sick young lady and is needing almost one on one nursing care because of her pain, heart, bleeding, and brain. Ryleigh had three procedures done yesterday to deal with some of her acute issues. These procedures required anesthetic. She was gone from her room for almost 5 hours…it was quite intense.

Ryleigh had a cardiogram done of her heart under sedation. They insert a probe down her esophagus to get an excellent look at her heart. She had a standard echo cardiogram done the night before and it showed her heart was good but they wanted to make sure she did not have the hole in her heart that could have caused a blood clot to get to her brain from her leg. The cardiologist said there was very tiny hole but they did a blood gas test and did not see the gas move from one side of the heart to the other. The cardiologist said it is very unlikely that this hole would have passed a clot to her brain causing a stroke, resulting in the damage in her brain stem.

Once the cardiogram was done they proceeded to place a filter in her vein just above her leg. This is to prevent any clots from traveling up to her heart and lungs. It went very well although Ryleigh was quite queezy about having something like that in her body. This will help reduce the risk of her having a clot travel up and cause more damage.

Her last procedure was having a PICH I. V. put in. She has had 11 I.V.’s placed since January 2nd. Tim and I decided that having a more permanent IV would limit the number of needle pokes she will have. It is located in her upper left arm and will allow for more mobility and activity. It is another way they are helping reduce her stress and anxiety.

We have not had much definitive news about the reason all of this has happened. Our Ryleigh has been a bit of a popular one because her issues are complex and a mystery. Right now the plan is to deal with her clot and keep her leg pain to a bearable level. Many tests have been sent away to determine what is going on regarding her brain injury, crohn’s, and the clotting. It will take some time before the results come in. This week she will be getting follow up MRI to see if her area on the brain has increased or decreased. This will continue to give them more information about the cause of the damage that has occurred. She will also be getting ultrasounds of her left leg to identify whether her clot is reducing or not. It will take time for her body to reabsorb the clot and we need to be patient.

Ryleigh’s body is working hard to deal with all of these issues. Her hemoglobin dropped yesterday and they did another test this morning to see where it is at. She may need a blood transfusion today to counteract this.

We continue to pray, hug, laugh, and cry as the days and night are stressful and long. Tim, Chloe, and I are a strong unit, we are supporting each other and being thoughtful of how each of us are doing.
I gain strength from all of the followers on the blog and facebook. Pray for a quieter and more restful day for Ryleigh – she needs some calm and peace to help her body heal. Love to all of you!

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