Baclofen test dose done today

Britney finally got her test dose of Baclofen today and it went really really well. She already is much much looser and in less pain in her neck arms and legs. She is over her infection, and has been very alert the past week looking at people when they talk much of the time. It was hard to find someone to do the test dose because the Craig Dr. who usually does it was on vacation the past 2 weeks and they went through many options of people in interventional radiology and anesthesia at St. Luke's trying to get it set up and by the time they did Dr. Ripley came back in town and did it today. It's probablly better that way so that she would have time to get over her infection. The kids are very happy. We talk on the web cam 1-2X per day. It's much better than talking on the phone. I am flying back next weekend for a day and a half.

Britney doing much better

Britney has been doing much better the past 3 days. I drove back to Arizona the last two days and didn't get to put a post up. She has been very relaxed and more awake. She has been looking at us when we talk more and more. She blinked her eyes tight when her aunt Jan asked if she wanted her to read, and then she blinked tight again when Jan asked her if she wanted her to stop reading about an hour later. Her fevers are gone, and her blood pressures have been very good for the past few days. I spoke with Dr. Fischer, her new infectious disease doctor, and he said she is doing much better. The Baclofen test dose should be in the next few days. It takes a long time to set up because they had to find a Neuro Surgeon and a hospital who would put in the pump (it doesn't pay very well so not many surgeons or hospitals want to put them in). If the test dose works well they will put in the pump. Again they have to document very well to get the insurance to pay for it. There is a spasticity scaling system they do before and after the test dose. She has had her braces off for the past few days to get this done. She also had a blister on one of her elbows that has been healing. I'll put up a post when I know more about the test dose.

Infection causing spasms and pain

Tuesday I came 3X because Britney seemed to be in much more pain despite having the splints on, and even with lots of massage, heat, and pain medicine. She started getting low blood pressures and spiked a fever that night to 101.8. She got lots of fluids and antibiotics. Everything got cultured (sputum, blood and urine). I stayed up with her all night to help her calm down, and make sure she got the treatment she needed. So far we know she has a urinary tract infection. Her doctors said many times that infection and dehydration can cause more spasms and pain. After she got about 3 liters of fluid and some antibiotics her spasms decreased dramatically and she has been progressively more and more relaxed. She had a good night last night and is sleeping really well now. They are still working out where she will get the Baclofen test dose with the neurosurgeon who will be putting the pump in. An infectious disease Doctor is coming to see her today. Over the phone yesterday he said he likes to treat toxic shock syndrome for 6 months with antibiotics to decrease the Strep A colonization so she was started on another antibiotic for that yesterday.

Britney had lots of pain over the weekend. She had a really bad day today. She was crying out loud a lot of the day. She was able to calm down with a lot of massage, heat packs, pain medicine, stretching. She is hopefully going to get the first test dose of baclofen soon. It is done by a lumbar puncture to see how she tolerates it. She has to be closely monitored because it can depress her breathing a lot and if it is bad she may have to go on a ventilator until it wears off. Then she has to get the pump inserted into her spinal canal by a neurosurgeon. I spoke a lot with Dr. Ripley, one of the Neuro Rehab doctors from Craig that has been following her a lot. He said she is really early in her recovery. Brain injuries from lack of oxygen typically take a lot longer to heal from than traumatic brain injuries. He said that it may be many more months or longer than a year for us to know what kind of a recovery she will have. He seemed very optimistic and wanted to give her every chance at recovery. He said that some times they take people to Craig early in their recovery but he thinks it is better to let her come later when she is able to follow commands more so she can use her rehab days from insurance when she can use them more. He said that they can follow her at a skilled nursing home and monitor her baclofen pump until she is ready to do 3 hours of rehab exercise a day (Craig's normal criteria). He is working with Britney's case manager to find a good place after she gets her baclofen pump that would still give her just as much rehab (range of motion) that she is getting now and that can take care of her splints. She is so medically stable that the people at Kindred and Craig think that after she gets her baclofen pump she will be ready to a skilled nursing home with really good therapy. She doesn't need the constant critical care at Kindred anymore because she has been doing so well. She is still on some oxygen but everything else has healed. Hopefully when she gets the baclofen pump she will be able to wake up more and not be in so much pain.

I made it to Denver safely late Monday. The kids were so excited to see me. Vera squealed for 5 minutes and again every time I got out one of her toys from the car. Jonas said about 20 times how much he missed me. Britney was in a lot of pain after the 3 day weekend of no splints and had a lot of stiffness. She did really well today with them and was very comfortable. She has been more sleepy because her Baclofen got increased again. She is having spasms in her neck, both arms and legs now. She looked at me a lot tonight. I talked with Dr. Yager today. He said she is more sleepy but when she has been awake she has been doing more. Her neurologist and Dr. Ripley from Craig have decided she will be able to get a Baclofen pump. It will go into her spinal canal. This way she can get high dose Baclofen without the side effects of being so sleepy. They didn't do it the last 3 weeks because they needed to know that the pump could be taken care of and that she will be going to Craig. The details are being worked out for her to get there. She is not awake enough to participate in exercise or follow commands consistently, but they will manage her Baclofen pump, and hopefully while she is there she will wake up enough to go through the rehab program. Her splints are working very well. Her right arm is all the way straight, and her left arm has been almost straight. She smiled again at Jan a few days ago and her nurse also saw it. Sorry for the delay between posts. I'll update you all soon.
John

Britney's splints are working great. She was up to 7 hours yesterday and her wrists are back straight and her elbow is much straighter. She is tolerating them really well. Her baclofen dose was increased and she has been a lot sleepier. When she is awake she is very interactive. She continues to make sounds and look at people. Her massages are really helping her relax and not have pain. I'll put another more detailed update when I get back to Denver. I am driving up from Tucson on Monday. I work tomorrow night.
John

I just talked to Casey for an update. The MRI showed decreased swelling from the CT scans she had at UMC. The swelling from what I heard from Casey was the only abnormality which is great news. She is progressing will with her splints and frequent massages. She had less spasms with the increased baclofen and she may get a intrathecal baclofen pump (a pump inserted into the spinal column). This is a very common procedure and done earlier may help with preventing permnant contractures better than botox injections and will help with whole body spasticity. She continues to make sounds, and be more and more aware of her surroundings and the people coming to visit her. I'm headed back to Denver on Monday for my 2 week vacation and I'm driving up a bunch of stuff for the kids they weren't able to bring with them. Jonas and Vera are excited to get a lot of their stuff again. Jonas loves school and has made some friends. Britney's sister Carlie came to visit for a few weeks with her son who is Vera's age. I'll post another update soon.
John