Ryleigh was able to get a PICC line yesterday. I am so appreciative to the health care teams in Prince George and Vanderhoof for making it happen. We can now spend more time at home. I was trained so that I can administer her anti viral medication at home. Hopefully it starts to work as she is still in discomfort.
These are supplies for three days of Meds.
Our home made Intravenous Therapy room. Much more comfortable and relaxing.
Ryleigh is at St. John hospital in Vanderhoof receiving an anti viral medication to help reduce the symptoms and further blisters and rash from the varicella-zoster virus. It is more commonly known as shingles. She started having discomfort a week ago. After some visits to doctor’s office and emergency as well as discussing with her medical team at BCCH she is receiving the intravenous medications. She must come to the hospital at 10pm, 6am, & 2pm. It takes between 1.5-3 hours. Her IV’s are not holding probably due to her dehydration and scar tissue from her many IV’s in the past. I have requested she gets a PIC line which is stronger and she will not have to experience all the pokes. She will have to go to Prince George to get it.
Ryleigh will need to get this med until there are no new blisters. Usually takes 7-10 days … That means 21-30 trips to the emergency every 8 hours. Whew. So I am balancing work and hospital. Which I am preferring better than traveling to Vancouver. Nice to be home going through this. Crossing fingers that we don’t need to travel.
Ryleigh is having her ups and downs. Pain has resulted in difficult sleeps. She is tired of her body not liking her. But she maintains her witty sense of humour, positive outlook, and hopes that tomorrow will be better.
Thanks to the wonderful team Kevin and Laurie at Wallace Studios who allowed us to have this moment of hope last summer when we had some time that was not focused on illness and health issues. Instead we enjoyed our new back yard on a lovely summer evening. I have it now placed in a spot in our new house that is visible to remind us what has been and will be again…no matter what. Ryleigh continues on a downward spiral…struggling with maintaining some sort of quality of life. She spends most of her time resting in her room – sleeping or spending time on her technology. She is searches online for odd facts, information, quotes, and videos that inspire or just make her laugh. Currently, she finds it entertaining to watch videos about others playing video games…I have to admit it is humorous as these are usually young adults and it becomes addicting to watch. Ryleigh is now off her treatment of steroids (prednisone) and besides some weight gain…it did not help. Frustrating…as it was always the go to med to get at least some relief. Ryleigh is now on a medication that she has had before. It is a chemotherapy medication that she was taking orally – methotrexate. The medical team thinks because her digestive system is so compromised that it is probably not absorbing the meds properly. So, the decision was made that she will need to have it administered subcutaneously – yes that means with a needle. Which means — I get to be a nurse again and give her the needle. It stings for quite awhile after she gets the med…but her ability to breath through the discomfort and deal with it all still amazes me. The hard part is when she says “I wouldn’t mind the discomfort so much if I knew it was helping”. We have noticed no change as of yet and she has had 4 doses….once a week…for a month. Ryleigh does not see her doctors again until the middle of May…seems like ages from now. I have been in contact with her BCCH doctors looking at other options. One suggestion is a medication that is not available in Canada without special permission – Thalidomide. It is the drug that was connected with severe birth defects and was taking off the market. Currently, it used in a variety of other countries for treatment of leprosy. As well, it is currently being used in Canada for a cancer treatment for adults over the age of 65. I researched it and Thalidomide has been used for some patients who have had severe refractory crohn’s. But again…mostly on adults. The medication is another hopeful suggestion but I have to admit that we have been discouraged by all the other treatments. We know that nothing is a cure but I am so hopeful that she can get back to how she is in the picture…painless, happy, and active. I am spending some of my spring break – researching. Getting information together for other types of treatment options to share with her doctors. I am concerned that they have become complacent as Ryleigh has not improved and they are truly stumped. So my job is to keep advocating with ideas, suggestions, and doing the exhaustive research that her busy doctors don’t always have the time to do. What I have found is that there is a specialist at Boston Children’s Hospital who is familiar with using Thalidomide and some other treatments. The hospital will do a file review and provide a second opinion. This may be the next focus for me to help Ryleigh…travel to Boston to have another group of specialists see if there is something else. I will be discussing all of this with her BCCH doctors… but that is not until May. So I continue the research….