Monthly Archives: March 2013

A Reminder of Home…

A Reminder  of Home...

This is our ninth week in a row of being here. I had heard there was a Tim Horton’s some where on site. With the help of a neurology med student toting a Timmies coffee ( we recognized from Ryleigh’s earlier care) , we got directions and I am enjoying my double double.
There are no other Tim Horton’s close to the hospital or Easter Seals house so this was a nice find. The bonus is that it is Roll up the Rim! Maybe our luck will change and we will win a RAV4.

Note: Caffeine has helped me deal with the lack of sleep and coping with all of the late nights, early mornings…but does not help with bags under the eyes!

Surgery #2

It was determined that Ryleigh will need to have surgery unless in the next 12 hours or so she shows a remarkable recovery.  She has only improved a little bit and the team of doctors would expect after the regime she is enduring right now with the NG tube she should be recovering and feeling better.  But she is not. 

Because her last xray was inconclusive they are not sure what is blocking her bowel.  They are thinking it is adhesions or scar tissue.  Ryleigh is scheduled for surgery Tuesday afternoon.  They are not sure what the surgery will entail until they can actually see what is going on. We hope it can be a quick and easy fix.  Then the road to recovery once again.

Our dear Ryleigh has been put through so much.  I wonder why she doesn’t get more mad or yell or scream or something. She continues to take things in stride. Chloe and I cannot wait until she is back to her bubbly self again like she was last week.  Ryleigh can’t wait either! 

 

Keeping

Ryleigh is making slow improvements. We still have to wait and see if she is getting better. The surgeons were in today and happy with some of the small progressions to recovering from her blockage. It looks like the “kink” or partial blockage may be working itself out. This is because her small bowel is resting and it has “deflated” or relaxed. Hopefully as it starts to work again the kink will not come back.
Two signs we are looking for are Ryleigh passing gas through her stoma and her fluid from her stomach being clear. She has passed some gas — who would have thought we would get so excited about “farts”. When she passes gas her ostomy pouch puffs out like a balloon. It is exciting to see it puffed out! Our lives have definitely been altered being excited about body processes.
Ryleigh is finding the tube down her throat very irritating and wishes it could come out. However, she does not want to be vomiting all the time either. She spends her time reading Hunger Games from her IPAD or watching shows on Netflix. She has lost the recovery energy she had last week and it looks like she will be starting over again regaining her strength. She seems more frail and weak this time.
Her resolve has been challenged too. Her spirit has crumpled a bit and it will take some time for her to feel like the world is not against her. Hard go for a 12 year old. We will know more tomorrow about whether she will need surgery or not. I think not but the events of the last couple of months has taught me to be cautiously optimistic and prepare for the worse! Crossing our fingers that she will be out before the end of the week — we have made special plans for the weekend, I hope we don’t have to cancel.

Waiting….again!

Waiting....again!

Another long day ahead of us…this treatment regime is a slow paced one to help the bowel rest. I am routinely checking Ryleigh’s pouch eager to see how much is going through her bowel. Small amounts are coming through so it is good. Hopefully a few more days of this and she will be once again working toward recovery.
I think I have mastered the art of waiting. But, it is difficult without sleep and being worried.
I hope that today is a better day. Luckily there is a Starbucks close by.

Comfortably Uncomfortable

Comfortably Uncomfortable

After a day of tests and procedures Ryleigh is as comfortable as she can be. Her NG tube is helping get rid of bile that is in her tummy so her vomiting has stopped. Her morphine is given every 4 hours – keeps the pain dulled for her. She needs to rest her bowels as much as possible so that they can heal and possibly the obstruction will go rescind and her body will work properly again. If not then she will need another surgery.
It looks like we will have to start at square one again with Ryleigh’s reconditioning. This round of issues has really taken a toll on her – she is weak and exhausted.
She is tired of all of this and in one of the wee hours in the morning she asked if she could be sedated until this was all over. “I just want to sleep through all of this mom”. What can you say to that….instead she worked through each pain surge and dealt with the vomiting. She is truly an inspiration.

Tough Nite/Tough Day

Ryleigh has finally settled into a sleep after not sleeping at all last night.  She was vomiting and in pain most of the night despite medication to try to help it.  At around 1:30 in the morning they placed a tube down her nose – throat- tummy to suction out the fluids in her stomach. The tube was not working properly so 2 hours later the nurses had to take out the first tube and put in a bigger one. This one did the trick and she has now stopped vomiting.

Ryleigh had 3 tests done today to get a look at her stomach and small intestine. Apparently, she has a partial blockage in her small intestine. They are not sure what is causing the blockage but are going to let her rest and see if that will help it take are of itself. If she gets worse or does not improve over the next few days then they will have to operate to repair the damage small intestine.

Chloe and I are in a bit of shock. I am exhausted — in the last 60 hours I have had 4 hours sleep. I am heading for a rest as Ryleigh is still sleeping. I need some sleep.

Tired of seeing my girl in pain….

It is 2:00 am in the morning and I am by Ryleigh’s bedside.  She cannot sleep because she is in pain.  She has been vomiting all evening and they have switched back to IV morphine to help her with the pain.  Not sure what is going on…they are trying to get her comfortable and then hopefully in a few hours the team will be back to figure out what is going on. 

To top it off she had to have a tube put down her stomach to remove anything in her tummy so that she would not throw up anymore.  Dehydration is an issue because her small intestine is still learning how to absorb necessary fluid and her body will always need to be well hydrated to compensate.  Her tummy is also a bit distended and the nurse has told the surgeon on call about that.  Ryleigh has had an NG tube before and hated it but was quick to say yes to this one because she was so nauseous.  She continues to astound me by her bravery and courage.  No matter what comes her way she seems to manage to make it through with dignity and the resolve to carry on. 

I am at the end of the rope and holding on tightly.  We spent most of Thursday planning and talking about what we were going to do as our little unit of three was going to be together again.  It is  so unfair as I don’t imagine Ryleigh will be going home tomorrow until things are figured out.  This is night two of the both of us not getting much sleep.  Thank goodness for Chloe who gets some sleep and then comes here ready to help and take care.

  I can only guess what is wrong – it could be a blockage, tear, infection….I refuse to borrow trouble and trust that this too will be taken care of by the medical professionals and I will continue to be the mom…I will keep posting when I can to inform.  I hope this is just a little bump along the way that has a quick and easy solution. 

Whew…

It has been a whirlwind this week.  I thought that as Ryleigh recovered from surgery my responsibilities would decrease as a nurse/advocate and become more mother.  However the last few days has been filled with meetings with health care professionals who are helping us make the transition to leaving the hospital. 

Ryleigh has 5 teams responsible for her care.  Each day I have needed to discuss, take notes, and ask questions.  Ryleigh has had moments of pure “awesomeness” and her sense of humour has been so fun.  However, there are other moments where she is fatigued, still in pain, and  having issues with the “leftover colon/rectum”.  This has been scary for all of us as we had assumed, naively, that once she healed from the surgery all would be better. 

Not the case, however this is better than before – much better.  Just had expectations that are not quite where we thought they would be.  Ryleigh is having some difficulty keeping food down – the last two evenings she has been in writhing pain.  The pain seems to contribute to the nausea and she vomits.  This happened on Wednesday evening and her team thought that it was a one time thing – perhaps she ate too much?  So no concerns.  But tonight she is dealing with the same issues and they are having to give her anti-nausea meds and pain killers.  There seems to be an unknown as why this is happening.  Of course, I am concerned and will have to ask questions tomorrow.  Thankfully we need to stay down her for a few more weeks.

I learned today how to put her ostomy pouch on and how to take care of it.  Ryleigh is not comfortable yet with the task so Chloe and I learned all about it and we will work with Ryleigh as she gains strength and comes to terms with things.  We have to go back for a couple appointments to be “tested” on our skills before we can come home. 

Ryleigh also needs support to help with her nutrition.  She has been malnourished for a long period of time and we have to make sure that she continues to grow and develop by eating and drinking the proper amount of calories.  She also needs nutrient dense foods but is limited with foods that could cause blockages in her stoma. 

Ryleigh is also dealing with being deconditioned.  We have been making plans to get Ryleigh out and about.  We naively thought that we could just leave the hospital and magically our Ryleigh could walk, play, to school work, shop, and visit various places.  The physiotherapist has come by and shared information at what will be best for Ryleigh.  We need to have a wheelchair for her – so she can walk for a bit and then rest when she needs to but still be out and do things.  Ryleigh seems to know what she can manage and we have to work with her to slowly, very slowly start to rebuild her muscles, energy level, and strength.  She was also given some stretches and exercises to help develop her muscles even if she is in bed resting. 

The process of recovery was something I had anticipated but am surprised by the amount of details that are involved as well as the time and energy needed on my part to make sure things happen. Hopefully once we leave the hospital there will be some time for me to rest and rejuvenate so we can move on to rehabilitation.  

Some TLC

Hair 1

Some TLC

Ryleigh’s hair was fixed! Amazing how there are ways to make patients feel more comfortable. This hair washing basin is designed for washing hair in a bed. Ryleigh loved it and her hair became much tamer.

Ryleligh is slowly starting to walk more. She is still attached to her IV pole with 6 lines so it is quite the production to get her mobile. We are hoping that she can have some of the lines removed. She still needs to be on her IV anticoagulant (blood thinner) as she will be having one last procedure to remove the filter in her vein. We are not sure when that is happening – hopefully it will be the last time she will be sedated for a long time. Not sure when this will happen.

We are all trying to adapt to the stoma and ostomy bag. It has taken some getting used to but I am confident that it will become just another part of Ryleigh. She receives training on Thursday to learn about how to use it, clean, and replace it. I assume I will have to be doing this for awhile for her until she gets more used to the idea. It takes some getting used to but it is much better than what we were dealing with before the surgery….very proud of how Ryleigh is dealing with it.

Recovery involves continued patience. Ryleigh is still very tired and events such as her hair washing makes her very tired. It is hard to find the balance between activity and rest.

I am weary but happy with the emerging of my happier, more content daughter.

Our Ryleigh is coming back!

20130303-170327.jpg

20130303-170340.jpg

With the help of a knowledgeable nurse and a helpful sister and a mom who took a back seat, Ryleigh got out of the room that she has been in for 7 days. She is still unsteady on her feet but is starting to be herself again- how I missed her smile and witty sense of humour. Still lots of work to do but at least is more willing to be part of her recovery. Nice to share some good news.