Monthly Archives: February 2013

Surgery

It looks like Ryleigh will be required to have surgery to relieve the issues with her bowel. All I know is that the GI team is in the process of making arrangements to have her admitted and start the process towards surgery. Currently, there is a shortage of beds at the hospital and so we are in a holding pattern to get started. We are very comfortable at Easter Seal House and can wait for a bed to open up. Our room has become a little studio apartment. We are cooking in the community kitchen a bit more which has allowed us to get to know other families. Chloe is restarting her school work and working hard to catch up on assignments. Ryleigh is trying to manage her pain by resting and not moving around too much. I am trying to keep us in a routine. Ironically, I enjoy the normal sibling squabbles between the two girls. Weird or what?

She is in pain most of the time and having frequent bleeding. We are not sure of the type of surgery whether it will be a resection or a full removal of the bowel. We have not had these conversations yet with the surgeons or the GI team. This is her last option and I am once again hoping this helps stop the pain, bleeding, and frequent trips to the bathroom. Hopefully, she will arrive back in Vanderhoof ready for spring. Once I learn more I will post.

Crossing Fingers

Today Ryleigh had her Remicade treatment. It was a tiring day for all of us as we got little sleep the night before because of our second adventure at the emergency room.
Gratefully, Ryleigh’s own doctor was on today and I must say I was relieved to see him. He is experienced and knowledgable and knows Ryleigh very well. Last night, the fellow who was attending the emergency made some judgements about Ryleigh that were incorrect. Today Dr. Barker could identify that Ryleigh was experiencing another flare of her disease. He listened to us and more importantly respected what Ryleigh had to say about her pain, her feelings, and her experiences the days. Such a relief not to be in “convince the doctor mode”!

Ryleigh is definitely spiraling toward full flare up again. Dr. Barker said this will be the defining time about what helps stop the flares and brings things under control. Her prednisone was tapered on Saturday and symptoms started on Sunday and have been getting progressively worse. He said it is worth trying the Remicade one more time — this will let us know if it is the Remicade or Prednisone that has helped manage things for the last 10 days. Ryleigh is confident that the Remicade is not working….she is determined that it is the Prednisone that is helping her. Dr. Barker believes the same thing — he said if the Remicade was going to work it would have shown some success in the last treatments and he feels it hasn’t but it would not hurt to try it again. I don’t want to believe that the Remicade is not working. Mostly, because I don’t want to admit what will need to happen if this treatment does not work.

Here is my concern:
Ryleigh has had three separate times using prednisone – these are the times that she has had some relief albeit short. She cannot be on the steroid this much – the side effects are too hard on her body – they can cause growth issues, bone damage, damage to organs like the kidneys. Long term this can be detrimental. That is why it is a short term fix.

If Remicade does not work then that informs us that her body does not respond to biologic treatment. She would not be a candidate for the next level of biologic called Humera. It is used when medications like Remicade may work for a period of time and then not work successfully. So, Humera will not be a choice for Ryleigh.

Methetrexate was a possible choice but Dr. Barker explained that it is most helpful for issues that are not like Ryleigh’s. Right now her disease is similar to colitis because the diseased area that is inflamed currently is in the large intestine. Methetrexate does not typically work for this type of inflammation.

So, the next option will be surgery. Dr. Barker said we will know if the Remicade will work in the next 24-72 hours. By Friday we should have some idea of whether the Remicade is working successfully and we will be connecting with the GI team and let them know what is happening. By the time the weekend comes and Ryleigh is not better then surgery will be the next option discussed. I did not have it in me to talk with Dr. Barker about the different types or how surgery would occur. I will cross that bridge if needed later – of course I will research all I can so I will be knowledgeable about the types of surgery. It is so scary because they will be removing part or all of her large intestine. Hard to think about or fathom.

So again we are waiting. Tonight Ryleigh was in so much pain with her gut — she asked for Tylenol which she has not asked for since the hospital. She has spent a significant amount of time in the bathroom and is experiencing bleeding again from her bowel. We will wait and see how tomorrow goes….my fingers are crossed.

Another Visit to ER

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Here we are again! We had a seemingly good day. But starting around 9:30 at night Ryleigh started having pain in her tummy again. She was upset because it felt just like the Crohn’s pain she has had before. She was okay dealing with it because she was going to be seeing her doctor the next morning at her Remicade treatment. Ryleigh settled down to watch a show she had downloaded from itunes telling me to get some sleep. About an hour she woke me up saying she had diarrhea. About 45 minutes later she had more this time with blood.
We knew that meant getting to the hospital and getting some help. Bleeding is an issue normally but on blood thinners it is another thing to think about.
Emergency got her settled right away, checked her out, another I V (#14!), blood tests, and now we are waiting for the next step. I am sure they will be consulting with the GI doctor on call and see what she needs next.

So now I was on the phone with GI fellow on call. She seemed a little frustrated that we were in Emergency. She kept asking me how much blood was in the stool- i dont know, i just saw red! She believes that because she is due for a remicade that is why the symptoms are coming back. Possibly? Or is it because Ryleigh is tapering off of prednisone?
Nevertheless, we were told to watch for any bleeding whatsoever and treat it seriously. So we saw blood, we came to emergency. I am not going to apologize for bringing her in. So many weird things have gone wrong that I am hypersensitive and will be advocating for Ryleigh. Geesh!
So another extremely long night/morning, remicade treatment (I am assuming) then we will wait and see. Not sure if I am confident or comfortable coming back as planned on Saturday. We have a spot indefinitely at Easter Seals. Decision will be made later in the week.

Family Day Weekend

Chloe, Ryleigh, and I were able to spend the family day weekend together – I missed Dan and Jakob — but it was nice to be the girls. We spent time together trying to renegotiate things as we are in a small space and we are all a bit tuckered out by the events the last 5 weeks.

The best part of the weekend for me was a visit from Carl and Becki – they came as ambassadors from my other family — the EDS community. What a delight to receive special care packages and messages from home. Becki relayed many stories of staff, students, and parents showing their kindness and caring towards our family. What an amazing spirit our school has for each other. I am so grateful for all effort shown to help us. I cannot wait to get back to Vanderhoof to share my gratitude and hopefully pay it forward.

Ryleigh’s appetite is starting to level out now that she is reducing her prednisone (steroid) medication. Her cravings for high carb salty and/or sweet things has mellowed but as a result she has gained 3 kilograms in a week! Much needed, I may add. However, she is a bit shy about the puffiness that the steroids add to her cheeks and tummy. I think it is rather cute — something a 12 year old does not want to be called.

Ryleigh’s infection is clearing up – thank goodness for the antibiotics. She has made the effort to go swimming a few times and has enjoyed it. The water is easier on her leg and this type of exercise is good for her. She manages about an hour and then it is time to go home and rest. We found another community center in Vancouver in the Killarney area. The girls really liked this pool it was smaller than the other pool, had a deeper pool to play in, and had a water slide. It was nice to have a change of scenery and get out and about for a bit.

Today was a bit of a stressful day for me. We got out to the mall – Oakridge Mall – which is what you would call a high end mall. Many name brand stores – I have been fortunate as both Chloe and Ryleigh have not been caught up in needing name brand clothing. But, the lure of Lulu Lemon called Chloe. We ventured in to the store and I tried to find a sale rack, no luck. Chloe will need to buy her own clothes with her own money — I realize it may be better quality but $125 for a hoodie just is not in our budget! However, I did find a really nice purse at a store (can’t remember the name) until I saw the price tag for $348! Oh my, I will stick with my Costco purse!

Ryleigh was not well today. She was weak and pale most of the day. We had to encourage her to get out and come to the mall today with us. She has started having stomach pain again and some other symptoms (she doesn’t like it when I go into too much detail on the blog) but I am sure everyone understands what I am referring too. There has been no visible blood but very dark stool — we go back to hospital on Wednesday and I will tell them about it. We are planning on returning to Vanderhoof on February 16th for a couple of weeks but if her symptoms continue we may be hanging out here awhile longer. Maybe the remicade treatment will fix things up — fingers crossed. We are all so ready to be in our own house. I am getting creative at trying to be more creative with cooking on a double burner hotplate but it would be nice to be in my own kitchen. I am a kitchen gadget collector but remarkably I am managing cooking with one knife, 5 spoons, 3 forks, 1 spatula, 2 pots, and a can opener. I am quite proud of myself and realize how lucky we really have it at home.

It is hard to have the ups and downs that go with Ryleigh’s illness. I start to get a bit relaxed and the a symptom comes back — I wonder if this is just a small thing or is going to lead to something bigger again. It is hard to stay positive and hopeful when I start to see some of the symptoms we have seen before – grumpy and irritable, tired, pain, pale, and tummy problems. I hope it is just a bad day and that tomorrow will be better.

We will venture out again tomorrow – possibly swimming or maybe the Bloedel Conservatory. I am trying to convince Ryleigh for us to go to the Aquarium or Science World but I have to respect her understanding of what her body is feeling and she does not think that she can do such a big excursion.

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“Perseverance is not a long race. It is many short races one after another.” – W. Elliot

Should be thankful that we had 6 hospital/medical free days. Was difficult to make the decision last night to go to emergency. Ryleigh agreed that she should get checked.

We took a cab to BCCH Emergency. This is one part of the hospital that I am not familiar with but was impressed by the way that it is organized. When you enter they immediately get you to check in and do a quick assessment. Then they have a waiting area for the intake nurse. We only waited about 5 minutes. The intake nurse did the standard vitals, got information about Ryleigh and then sent us to registration to get a medical wristband. They have screens up that tell you how long the wait time will be — it was going to be 4 hours. I had expected as much – it is cold and flu season and the waiting room was packed. I was a little concerned about the coughing and sniffles around us as Ryleigh’s immunity is compromised due to her treatments.
No need to worry – the intake nurse was right on it. The nurse took us down to an alternative waiting room that had nobody else in it. We sat down with the intention that we would be waiting for awhile. I was prepared — I brought my knitting! Yes, you heard that right. I figured out a simple pattern for a knitted hat. I worked on it and Ryleigh used her IPad. We settled in knowing that our turn would come eventually.
About 30 minutes later we were brought to a room. Now, anyone who is familiar with emergency room protocol know that it is not first come, first serve — it is based on patient’s needs. So,when Ryleigh was seen less than an hour after entering, I was a little concerned. I asked the nurse and he said because she was a patient with a complex history as well as being on prednisone she was bumped up. I have never been one to complain about waiting times at emergency or doctor’s offices. I have always felt that waiting meant that stellar health care was occurring – that the nurses and doctors are not trying to rush people through but are spending the time necessary to care for their patients. It is my job to explain the concerns I have for my daughter’s and advocate the best I can. But complaining and being negative does not help any situation. This may seem to be naive but I refuse to be negative about things like this that I really have no control over.
After the nurse and doctor looked over Ryleigh – it was decided that she needed to have blood work done and intravenous antibiotics. We were not sure how long she was going to be in. At this point – Ryleigh had a bit of melt down. I totally understood – she is very tired of hospitals. AND she was going to have another IV placed in her hand. The nurse did a great job getting the IV in on the first try but unfortunately because of the blood thinner she bled a bit and that was scary for her.
Each of the emergency care rooms at BCCH have access to a DVD and a TV. So we hunkered down and started watching Diary of a Wimpy Kid – Roderick Rules as her IV started giving her the antibiotics she needed. Yes, you non-believers, I continued knitting. The care continued to be stellar – emergency care is different then upstairs but nevertheless excellent. They called Ryleigh’s GI team who did not want Ryleigh to be in the hospital for anymore time that was absolutely necessary knowing how Ryleigh must have been feeling. So after her blood work came back they decided to let her have one dose of IV antibiotics and then she could go home with a prescription for antibiotics to take every 6 hours.
We arrived back at Easter Seals House in the wee hours of the morning. Ryleigh and I had a snack and then headed to bed knowing that she had a 7:30 injection of her Enoxaparin and we had to get up soon.
Needless to say we spent most of today resting. I can tell Ryleigh is feeling a bit under the weather. She had a nap in the afternoon. I went to get her prescription and found out she had to take the medicine on an empty stomach — this caused great difficulty for Ryleigh as she is hungry almost all the time because of the steroids. But she figured out a plan and used her IPad to set up a medication and eating schedule. Basically medication is at 7:30 and 1:30 Eating is between 8:30-11:30 and 2:30-5:30. That could work. However, I guess I am getting up at 1:30 a.m. or staying up…whatever works.
So, this was not a serious medical issue but it was one that had to be taken care of. An infection could become a serious medical issue. It was a good reminder that I need to continue to b vigilant in looking for any changes in her health and/or demeanor. Another short race finished!

A SIDE NOTE:
Earlier yesterday- Ryleigh and I went to a pool in the area. It was called Hillcrest Center. It was where the curling occurred for the Olympics and they have made it into a community center. It was amazing. The actual physical building was beautiful. The building had a library, rink, pool, work out gym, activity rooms, and a snack bar/coffee shop. It is a family oriented building with activities for all ages. Seeing families, teenagers, retirees, and others participating in the various activities at the center.
Swimming with Ryleigh was such a wonderful time. It cost 6.75 and we were able to exercise in a more enjoyable and helpful way. The water was great for her sore leg. It was fun because there were different things to do. Water basketball, volleyball, water fountains, tag games, hot tub, steam room, and wading pools.
I know that the referendum is coming up for the pool in Vanderhoof. I understand the issues regarding taxes and money to maintain the pool. However, this would be such an amazing option for Vanderhoof. It would provide a central hub for positive activity. When I saw all the positive interactions between parents, kids, teens, and adults. There was a feeling of community. I think this would be what a pool would offer for Vanderhoof. Please vote with this in mind.

Spoke to soon…

In my last blog I wondered if I was feeling a bit of withdrawal as my adrenaline and cortisol levels have been reduced as we have been 6 days out of hospital. Nope just plain old exhaustion.

Right now I am in an emergency room with Ryleigh. She fell asleep about 20 minutes ago. Ryleigh started having some issues with the site on the side of her neck where they inserted the catheter to place her clot filter. It was oozing pus and blood yesterday and some today. I was more concerned when the area went from a small dot to a larger red area that is the size and feel of a marble.
It looks like she will need intravenous antibiotics tonight. IV number 13 – whew. Not sure how long we will be here tonight. They are trying to get a consult from the GI team. They want blood work also. This will take time.
Understandably Ryleigh is very upset, angry, and very frustrated. I dont blame her.
I hope we don’t spend the whole night here!

Slow and Steady…

Another day closer to us coming home. We had a very laid back day – I seem to have a bit of a bug although I am wondering if it is adrenaline withdrawal?!!! The last weeks have been so intense that just having some down time is a different feeling. Ryleigh and I ventured out to Oakridge Mall and had supper at White Spot. It was a two bus ride for us and it was good to have Ryleigh moving in different environments. Stairs are the hardest thing for her but she admits the cane makes it way easier.

Ryleigh had another nose bleed but it did not last that long. She also has major bruises on her legs from the injections. They are huge! I am not sure if this is typical or not. We connect with the hematology nurse tomorrow and hopefully she can answer some questions.

Chloe comes back from an almost 2 week stay in Edmonton at my sister’s place this Saturday. Ryleigh and I have missed her and look forward to seeing her again. Our little room at Easter Seal’s house will be crowded but we don’t mind. Maybe it will be a motivation for Ryleigh to get out more.

Lots of LOVE and LAUGHTER

We all need something to lean on….

Today was a wet and rainy day but it wasn’t cold and snowy. Ryleigh was up very late last night — we got watching some television and she got really into reading Catching Fire (part 2 of the Hunger Games series). The steroid, prednisone, keeps her up too even when she is feeling tired.
Last night Ryleigh had another nose bleed which is one of the side effects of her anticoagulant (blood thinner). It lasted almost 8 minutes – we were told if it went over 10 she is to head to emergency. Luckily we did not have to go there. I can tell the anticoagulant is working because of the nose bleeds and the bruises she is getting from her injections. It is not a pretty sight but she says they don’t hurt.

I finally convinced Ryleigh to get a cane. We found one that fit her but she was reluctant because it was quite ugly and looked like “it belongs to an old lady”. She was right…

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It was black and brown. So we decided to head to Michael’s and figure out a way to make it more youthful and something a teenager would like. She found a bin of duck tape and created a fun looking cane that anybody her age would be proud to have – maybe she will start a new fashion trend. If you look closely it is leopard and zebra print.

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She now uses it to get around and finds that it is helping her. She says that if feels like she has another leg helping her out as she finally admits that her left leg just isn’t the way it should be.

Ryleigh learned some difficult lessons – accepting that you may be different than others and being willing to lean on something when needed. I am glad she is getting used to the cane here so she will feel more comfortable using it at home.

Ryleigh walked for bit farther today since she could use the cane. However, it tuckered her right out and she hasn’t left her bed for almost the whole afternoon. This is going to be a slow but steady process – no quick fixes.

I am getting used to my little kitchenette. We have a two burner stove, small fridge, and sink. It reminds me of my university days — although I am a little reluctant to eat the food I ate back then. I am trying to be as creative and healthy as possible. Luckily there is a Safeway across the street and we can get fresh fruits and veggies, and the odd roasted chicken.

I am also practicing my knitting….thanks to Sally for delivering some supplies to me. I am getting the basic technique down pat but trying to read a pattern to make something….you need a whole different degree for that! I will have to get someone to help me decipher it — it looks like it will be my students as I understand there are some lovely young ladies knitting some amazing scarfs for fundraising for Ryleigh.

I have learned the lesson again that it is okay to lean on others just as Ryleigh has learned to lean on her new cane. My gratitude to all that have let me lean…

Don’t mess with a girl on prednisone and her pancakes!

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It is so odd to go from having Ryleigh only eating 500 calories a day to 500 calories as a snack! The change in her eating habits because of prednisone is unreal. One morning she ate 3 pancakes, 3 eggs, and 6 sausages! We travel to IHOP every morning on the #17 bus so that she can get her pancakes. You can probably tell by the puffiness in her cheeks that the steroid’s side effects are really showing. She also has a budda belly as well due to the steroids. She is now in the process of tapering off of the prednisone and will be done in about 5 weeks. Her appetite will decrease with the reduction of the steroid and then time will tell if her Crohn’s/Colitis will truly be in remission or not. She is very cynical and said to me today that we should enjoy this time as much as possible as she is not feeling pain in her gut or having other IBD symptoms. “They will return mom, I know it.” I hope she is wrong. Perhaps the 4th remicade treatment will be the charm.
They will be increasing the dose and having her treatments closer together to try and get it to work — that means travelling to Vancouver once a month.

We have tried to get out and about so that Ryleigh can begin her reconditioning. She continues to struggle with walking or standing for more then 10 minutes at a time. We looked at a cane for her but it was too big. We are going to go to a speciality medical store to find one designed more for children. I think if she had something to lean on when walking it would put less pressure on her leg. The leg pain is disabling for her and she struggles with walking and going up and down stairs. I keep reminding her that her leg has had a double injury — clot and weakness from a brain injury. Nevertheless, she still gets frustrated with herself. The other issue about her getting out and about is that her heart races and it really scares her. Even when she is moving around the room this happens — much like it did in the hospital. I am not sure if this is another issue or continuation from her low hemoglobin. I am going
to contact the clinic tomorrow to ask for some advice.

Ryleigh is being an all star with her daily injections of the anticoagulant called enoxaparin. When I was given the directions on how to do the injections they reminded me to make a grid pattern in her thighs so we could identify where the last injection took place. Therefore we wouldn’t reinject an area too soon. I don’t think that is going to be a problem. Each injection point has a bruise around it. It is very easy to see where she has had her pokes. She hates the injections but had become resigned that she hates having her clot even more.

I continue to enjoy the moments with Ryleigh as she begins to emerge from the cloud of her illness. Her bubbly and funny personality is starting to shine again. I am amazed that four weeks ago – even two weeks ago- she was so sickly. She was sullen, sad, and lethargic. I hadn’t realized how much I missed her giggle and laughter. She is laughing more and there is a sense of relief in her that she can be a child again. I told her she has some catching up to do – so she needs to laugh, have fun, play, and enjoy each moment. She is definitely doing that in any way she can – making fun of me seems to be her greatest joy right now. She is limited in what she can do so I will let her get away with it for now.

As for me – it seems like we are in a holding pattern. I intensely watch her symptoms without her really being aware that I am. Her left leg still swells up and she will have a cankle (calf and ankle all in one) – I watch to make sure it does not get worse. She still has some issues with her face, fingers, and leg but there have not been any new neurological concerns. She has been good at telling me when things are different. She has had some belly pain but my guess is that is indigestion from all the pancakes! All in all, I am trying to not be anxious or worried and I am sure as the days go on it will be easier to not fret so much. Both of us are appreciating the close vicinity of the hospital and feel safer being near her team of experts.

When Ryleigh was first diagnosed I had this false sense of security that she would be given the right type of treatment and life would go on as it always had. I am coming to terms with the fact that her illness is complex and chronic. It cannot be fixed by one thing — it needs to be managed and brought to a point where she can live a normal life. I think I see Ryleigh on the outside getting healthy again (perhaps a false sense due to the steroids and blood transfusion) and one can only hope that this time we will have figured out what to do. Until an illness like crohn’s becomes really severe it is an invisible disease. Most people would look at her now and think she had nothing wrong with her. I hope that research continues to find a cure for this disease. It is truly an unforgiving illness.

Tomorrow I am going to try and get her out for a longer period of time – hopefully with the help of an appropriate sized cane.

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