So Katie has not had a very good couple of weeks… sorry this is a loooong It’s been very hard to update, things literally change minute by minute.
December 10th – Katie was feeling nauseous and had stopped eating and she was drinking very little. This is not an abnormal side effect post chemo therapy . She’s on TPN anyways ( IV nutrition thru her PICC line)
December 11th – she started bleeding from her bladder or kidneys. Despite X-rays, ultrasounds and a CT , Dr’s still don’t know why or where it’s coming from. They did start her on antibiotics in case of infection. There was some improvement and then it got worse.
Dec 12/13 – she began vomiting despite completely stopping eating /drinking due to pressure and nausea. The nausea had gotten progressively worse and the bleeding was also getting worse to the point the clots started blocking her bladder. They needed to stop her blood thinners due to the continued bleeding.
Dec 13 or 14th they put in a special catheter to flush her bladder and drain it. Her Ostomy has also slowed down and her G tube keeps exploding because it seems to be positional now so it’s not draining properly and causing her to feel nauseous and bloated, so that sucks a lot! Fortunately though she has some amazing nurses and we believe one of them has figured out the secret handshake / position to get her tube to drain when Katie starts getting uncomfortable.
Thursday Dec 14th – It was decided earlier that morning that her Fentanyl pumped appeared to not really help her pain and only made her feel really off so they stopped it at 9:30 AM . Katie was super bright and alert, she seemed to be the best she had felt in a long time! She didn’t require as much pain medication either! Things were really looking up. At around 12:30 she got her usual dose of painkiller and within a half an hour she became extremely listless and drowsy to the point the Dr had difficulty waking her. They held all her pain medication for hours. She wouldn’t fully wake up. They did all sorts of tests. She woke up a bit Thursday night but still very tired and not well. It was also discovered at this time that she had fluid in her lungs , they began to rule out possible early kidney failure and possible pneumonia. Her oxygen level continued to drop she went from not being on any oxygen to 5L. Her bloodwork showed had low white blood cells and especially neutrophils, they are needed to fight infections. She was placed back on antibiotics and they did another ultrasound, it showed her kidneys were ok.
Saturday December 17th – her pain is much better, her oxygen is still 4 Lpm. She still gets really short of breath easily, but she was able to sit up in a chair for a good half hour and did her breathing exercises. She’s got a fancy new bed as she has a nasty pressure sore due to not being able to lay down for months now. She’s still in a lot of abdominal and back discomfort . Her biggest complaint is pressure squishing her lungs:/ she is not in kidney failure and her neutrophils are starting to come up, however her red blood cells and platelets are down but they are expected to start coming up soon. Saturday night the bleeding appeared to have stopped 🤞praying the chemo is working!
Sunday Dec 18th was good, Katie sat up in her chair most of the day , Sunday night we watched Home alone and we were enjoining Christmas tunes. Katie was feeling so well she had a little bit of protein shake and hot chocolate. She decided maybe she should try to walk a little since her Dr. said she needed to start walking to keep her muscle strength up. With the help of her dad and I , we helped her stand up, got her oxygen tank and IV poles ready she only took a few steps to the end of her bed and she started gasping for air and she said she could not breath, at all. She looked like she was going to pass out. We sat her down on the bed. I turned her oxygen all the way up as high as I could and pressed the emergency button. I grabbed her oximeter and her oxygen was only reading 70%. I feared she had a pulmonary embolism. The nurses came running, ended up putting her on high flow oxygen and they took blood and got an X-ray. I expressed my concern about a PE. The Dr. On call didn’t see anything in her X-ray or bloodwork so he decided not to do a CT that night, despite my concerns and Katie’s marked and sudden change in respiratory distress and oxygen requirements. Monday Morning Dec 19th , Katie’s regular Dr.’s we’re back after being off all weekend and immediately called for a CT scan that morning. Katie had a saddle embolus in her pulmonary arteries (in her heart) which is often fatal. She has a number of large clots throughout both of her lungs. Bilateral pulmonary infarcts and she also has very large bilateral pleural effusions. All of these can be life threatening. They did an ultrasound of her legs to find the source of the clot and they have found a large clot in her L femoral vein. Katie has significant swelling in her left leg and foot. She has been started on blood thinners again however it is a delicate balance between causing internal bleeding and treating the clot.
Tuesday Dec 20- Katie had some GI tract bleeding and her bladder continues to have bleeding. The decision was made to back off on blood thinners for the time being to allow things to heal and to allow her to have her lungs drained of fluid as her breathing is very difficult and laboured.
Wednesday Dec 21 – her right lung was drained of 1 litre of fluid, Katie stated she had instant relief and improvement in her breathing , she was able to come down to 6 litres of oxygen.
Thursday Dec 22 – left lung was drained of 550 mls of fluid. Her Radiologist ( whom she is on a first name basis ♥️) recommended she have her R lung drained again tomorrow as it has accumulated more fluid already.
Katie is in a lot of pain from the procedure but her breathing is much better. Praying for some relief for this poor girl.