Posted on May 19, 2018
Please see below for updates from Heather over the last 10 days. My apologies for being late with the info. Kim has been through quite the rollercoaster over the last couple of weeks. The family is emotionally and physically exhausted but Kim, as we all know, is a fighter and has thankfully battled back twice from ICU-worthy infections. - Harmony
Things are looking better here in Denver. We had our whole family together for a few days. That hasn’t happened in a while. Jim and Haylie are flying back to Montana today, but we have aunt Michele flying in. Kimberly is now off oxygen and using room air only. She is off the morphine pain pump. She has started to take some medications orally, which means she is hooked up to less lines. And she is starting to engraft! Her white blood cells, neutrophils and lymphocytes are increasing. They are still tiny amounts, but are on the way up. She is about a week ahead of schedule on this. She is still receiving transfusions of platelets and red blood cells quite regularly.
They are still not quite sure what caused the paralysis of her left leg , but she now has almost full movement. It is still weaker than the right, but she is seeing a great PT staff here who are helping her out. They have been amazed with her progress in the last 3 days. She is starting to eat again a little bit. They are reducing her TPN calories (IV nutrition) to help stimulate her appetite. It’s hard to have the urge to eat when you are getting all the calories you need. She’s trying to walk around a bit more, but it’s a bit of a challenge when you are hooked up to a filled IV pole. She has made huge improvements since being in the ICU Monday. It’s hard to believe this is the same kid. Based on recent experience, we know that we may have more bumps in the road, but we really feel like we’ve had enough potholes so far. We would be just fine with boring! What does Kimberly need? Keep up the texts and cards. She’s been away from home for over a month and still has 3 months to go. Sign her yearbook (Claire Schmidt has it at school). And remember that she would love to be with you right now....so savor the ability to do normal kid things. Thanks to all who have sent words of encouragement or offered support in any manner. This is an unreal ride.
Kim was transferred back to the ICU last night after losing movement in her left leg. After multiple tests, it looks like she may have a viral infection that has caused some swelling in her brain. She also started to lose movement in her left arm, but that is improving. She had a lumbar puncture that showed it was unlikely to be a bacterial infection or fungal infection and that were no leukemia cells in the fluid. After she had the lumbar puncture she had a small seizure. Thankfully, there have been no more.
She has started on some different antivirals and will be starting PT today to strengthen the left leg and hopefully regain movement. She has feeling in the leg, just cannot move it. We do know that she did not have a stroke and there is no brain bleed. She will love back up to the transplant floor either today or tomorrow as she has stabilized. We have been assured by the physician that this infection is not life threatening. She will also have a full body ct scan today just to be thorough. The positives are that her mucositis has pretty much resolved and we are cutting back on her pain meds. Her cultures are also clear from the sepsis last week. I flew down last night, a few days early. Thanks to all who stepped in to take care of the animals and the house. Update: when I was writing this post, neurology came in and Kimberly lifted her leg by herself! I think Jim may have been jumping up and down in excitement. Thanks for the prayers...keep ‘me coming.
Update on Kimberly....she has been moved out of ICU, back up to the bone marrow transplant floor. She is still running a slight fever, but it is 100-101, instead of 104-107. We will take that. Her blood pressure has evened out as well. We've been told that she is at the peak of her mucositis, and it should start improving in a few days (we've been told around day 10, and today is day 6). At that point she should be able to start weaning off pain meds and nausea meds, and possibly start eating and drinking again. She has been getting her nutrition through her IV for quite a few days. She was up moving around a tiny bit today, which is a change since she's pretty much been sleeping the last 3 days. I know she doesn't feel well because she hasn't even checked her phone in days.
Big thanks to my sister Harmony, who spent the last week in Denver taking care of Jim and helping with Kimberly. Haylie will fly down on Saturday, and I will fly down next Wednesday to switch spots with Jim for a while. We were expecting Kimberly to have more of an extended stay in the ICU. The power of prayer is amazing. Thank you for responding when we needed you most.
We could really use some prayers right now for Kimberly. She is being moved to the ICU due to fever and infection. They think the source of infection is from the severe mucositis all througout her gastrointestinal tract, which is allowing bacteria to cross into the body. The physician said about 50% of the bone marrow transplant kids have this issue and end up in the ICU for a few days. She will have more eyes on her all throughout the night than on the transplant floor. Last night her fever spiked at 107, and her blood pressure got really low, but they decided to keep her on the transplant floor. Moving her now is more of a precaution. It will be about another week until the mucositis heals, and right now she is on triple IV antibiotics. While the physicians see this often, it is new and scary for Kimberly and our family.
Haylie has one day of finals left, then will be home Wednesday afternoon. She flies out on Saturday morning to be in Denver for a few days. I am supposed to fly down to Denver next Wednesday, but may adjust my trip based on how she does overnight. The physicians seem to think this is a bump in the road and she will be back on the transplant floor in a few days. At this point there is a whole lot of trust and faith involved. Please add Kimberly to your prayer chains and circles. She could use an army right now.