Tag Archives: central venous catheter

The moment we have waited for…

Rare flowers
Ryleigh was officially engrafted on Tuesday and that enabled her to get some time out and about on the third floor. She ventured to the playroom that was reserved for her as she could not be with anyone else besides Chloe and I. Chloe and Ryleigh played air hockey and Wii…enjoying time together laughing and just having fun. It was pure joyfulness at it’s best.

In order for Ryleigh to be discharged from the hospital I had to make a new friend….Chester.

My practice buddy...who knew I would learn so many nursing skills! My mom would be so proud.
My practice buddy…who knew I would learn so many nursing skills! My mom would be so proud.

I had to learn how to properly change Ryleigh’s dressing for her central venous catheter or CVC, heparin lock her line (so the line won’t clot) , and change the ends of the line. In order for Ryleigh to be let out of the hospital in my care, I had to be able to demonstrate that I could do these three things. The nurses spent a few days guiding me through the steps and I was lucky enough to have Chester to practice on.

This morning I did my final “test” and demonstrated my new learned skills so that we could get the green light to be discharged. I packed up the room and it took 3 trips to the car to get all the stuff we had brought out of the room. I left the hospital this time feeling confident that this was a good experience (for once) and that Ryleigh is completely without pain and discomfort. It was worth all of the sacrifices the three of us have made. I am proud of how we all managed during this challenging time.

Ryleigh requested lasagna with all the fixings.  I was more than happy to honour her request.
Ryleigh requested lasagna with all the fixings. I was more than happy to honour her request.

When things go well it feels great! It has been surprising and I will admit strange that there were no major issues during Ryleigh’s stem cell transplant process. After all the heartbreaking news the last few years it is a different place for me to be feeling so relieved and confident that Ryleigh is going to get some relief. But, I will not question or waste a moment of the positive energy that currently drifts around the apartment.

Staying for six weeks on the oncology unit was bittersweet. I met some amazing families facing tremendously difficult situations. I met parents that were kind enough to let me into their lives and take the time to talk and visit with me. Being so far away from my family and friends…I really appreciated the time they took away from their children to listen to my ramblings and support me as I took a break from room 8. Many of the families experienced good news and results from the treatments they were getting. But sadly even all the amazing care, treatments, and love cannot keep a child with their family. It was heart wrenching to get to know a family and then in one night find out they had lost their little boy. The strength and and courage that families face here is so inspiring. I am grateful that I have two lovely, teenage daughters that have survived. I will never take that for granted and will spend the rest of my life cherishing and loving every precious moment I have with them.

Ryleigh is now a post transplant outpatient. She goes for her first follow up appointment on Monday. We spent our first night having enjoying our home cooked dinner and just being in each other’s presence in the apartment. Although her counts are good (somewhat normal) she is dangerously immune suppressed. One of the doctors explained that it is because her bone marrow is producing brand new cells that may not quite yet know their job. So if she is faced with bacteria or viruses her body may not know how to handle things. Until they get settled and her immune system is working well again she has to be careful. She has certain foods she cannot eat, I have to cook using strict foodsafe practices, and she cannot go out in public without a mask. We also need to keep the house clean and dusted. Chloe was a real help in getting the final things done on the apartment last night– dusting, vacuuming, and bleaching floor, counters, etc. I also got our car detailed — got rid of all possible contaminants.

All is well in our world right now…great to be able to say that. At least 4 more weeks in Vancouver and then we are planning on heading home!!! Blessed we are.

Just Winging It…

Ryleigh is admitted and she has started the process…

Yesterday, Ryleigh spent her day preparing and having surgery  to have her central venous catheter inserted.  The catheter is a thin flexible tube that lies under the sking  and creates a safe way into a major blood vessel. The CVC makes it possible for her to have treatments and regular blood work without having needles and pokes.  This allows for less pain and less damage to blood vessels and tissue from standard intravenous therapies. She was in good spirits once she woke up and got settled in her room on 3B.  This will not be her permanent room (thank goodness as it is very small!).  The day before her transplant she will be moved to a room prepared for Stem Cell Transplant patients.

Ryleigh is on a countdown towards the transplant.  The countdown is the time that she has to have her preparation regime.  This is the time she receives the chemotherapy to basically remove cells or parts of the blood system that may be causing her disease and to clear the bone marrow space to make room for her transplanted cells.  Today is -11 and she is receiving a drug called  Anti-thymocyte globulin or ATG.  It was a six hour infusion for her today.  She had a bit of an allergic reaction to it causing hive and itching.  She also had a bit of a fever and severe chills and shakes. She receives this drug Feb 1 (Day -10), Feb 2 (Day -9), Feb 3 (Day -8).  She will feel like she has a bad flu bug and as the days progress her blood counts will drop and there will be an increased chance of infection. 

She will receive other chemotherapy drugs from Feb 3-10 (As we get to those I will explain the type of chemotherapy and side effects). These are Day -8 to Day -1. On Day -1 Ryleigh will be moved to her transplant ready room. 

Day 0 is scheduled for February 11. We then wait until her bone marrow takes those seed cells (stem cells) and creates a newer system so that she can hopefully be chron’s free for awhile.

Ryleigh’s spirits are mixed… which is to be expected.  She is hopefully cautious.  She asked me today what we are going to do if this does not work.  I told her we would search to the ends of the earth for even more specialized doctors and care! We joked that if this had to happen it would be in some place like Hawaii, but she said knowing my luck it might be in Idaho (not sure where she got Idaho from…but it was humourous).

Ryleigh is making more of an effort to be the “captain of her care”.  She is communicating with the medical staff more readily and is being honest about how she feels or does not feel.  I am trying my best to be in the background supporting and not taking over too much. When she isn’t sleeping we have been watching this season of Criminal Minds — makes our problems look like a picnic.  We really enjoy the show and the characters and it is a good distraction from all the hospital noises and action. 

Unsure of how Ryleigh wanted to deal with the next month or so, I asked her if she wanted a plan for each day and know what is to be expected.  She said, “Nope, Mom I just want to wing it! That way I don’t have to worry about what is going to happen I can just deal with what is happening right now.” I would say that she is being mindful of where she is in the moment and not focusing on too much of the What if and so forth.  I admire her for that….I can only be mindful and be in the moment once I have figured out all possible outcomes and a plan to deal with them in my head at least!  I know this is futile because the what if list is infinite but I am okay with that. 

Winging it

Chloe has become quite comfortable in our little apartment.  Even though she misses the two of us, I am confident she is enjoying the independence of staying by herself in the heart of Vancouver.  Good practice for when she is ready to move on to life after high school.  She is managing her pain in such a responsible and thoughtful manner.  I forget sometimes that she struggles with the pain throughout the day as she has learned and is using strategies to overcome the pain and keep on with her day. 

I am not as energetic as I was a year ago – I am sure it is the combination of being one year older AND having gone through a traumatic year already and not really having a chance to recharge.  I am sleeping at the hospital which involves interrupted and short sleep times.  I went back to the apartment today and had lunch and an hour nap just to reenergize.  Ryleigh is not quite ready to be by herself at night but I am confident as she gets used to the nurses and routines I may be able to crash at home for 4-6 hours. 

As we finish Day -11, I am thankful for the incredible care she has received, for Ryleigh’s winging it attitude, Chloe’s ability to go with the flow, and the strength of two amazing daughter who help me be strong!!!