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.
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.
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!
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