Well, after I finished my last post at 1 this morning (and I had erased half of it and had to start over---UGH!) Mikaela had shut off the tv and light and I thought we were settling in for a good night's sleep. Just as I was dozing off about 2am Mikaela came over to me in a lot of pain, feeling dizzy, nauseated and just plain yucky all over.-poor little thing! I got her back to bed and while I was sitting with her, things seemed to be getting worse. Mikaela said her ammonia was going up and so I called the nurse who came in and then went out and called the dr. that soon came in and had labs drawn early (at 3 instead of 4). They came back and her ammonia was 225! Once again Mikaela was right. She is so in tuned with her body for a 13 yr. old. Amazingly, she was still able to correctly answer all of the doctor's questions. (even the "What day is it" question-which is totally unfair because nobody in the hospital remembers quickly what day it is. They all seem to run together.) This ammonia thing is such a funny little beast! Anyway, it was decided to keep an eye on her and if her mental status changed then they would consider sending her to the unit (PICU). Thankfully, her mental status has remained unchanged. They also doubled her dose of Neomycin to 1000mg BID (twice a day). Neomycin is an antibiotic that kills the bacteria in the gut. Since ammonia comes from gut bacteria, the thinking is that with less bacteria there will be the less ammonia. Then the lactulose is still on board to rid her body of the ammonia that is still hanging around.
So far it has been a very busy day with my very sleepy girl. About 9:15 we met a new dr. who was referred to us by Dr. S and his wonderful nurse, Amy. (We were due to meet with her in clinic today but, since we were here as an inpatient, she came up to our room.) Our new dr. is a psychologist who focuses on pain management for kids in Mikaela's situation. She uses hypnosis, relaxation, breathing techniques and positive imagery to give patients a variety of strategies for coping with chronic pain. She is also someone Mikaela can "dump" on if she ever feels like it. And sometimes that can make all the difference! Next, she had an ultrasound-right here in the room. I love it when they come to her, especially when she is feeling so badly. Then the IV nurse stopped in to change her PICC dressing-OUCH. Her skin is totally raw from sticky dressing covers. :( Following that, we met with a CRNP (certified registered nurse practitioner) from the chronic pain management team to hear of more ways to deal with pain before using narcotics and other drugs. She had some good ideas and will pass her suggestions to her attending. Maybe someday in the near future we will meet with her in clinic to follow-up. And finally, Mikaela's nephrologist stopped by to check on her because whenever her liver decides to have a moment, the kidneys decide they need to get in on the action too-and so Mikaela's creatinine goes up. As always he said lots of things that make sense at this point. First, stop the growth hormone (yeah-no more daily shot). Often times children in renal failure will stop growing. It takes a lot of energy to grow and that energy is needed by the body to stay as strong and as healthy as possible. Also, if the kidneys aren't working well, it can handle a small body much easier than a large one. When taking growth hormones everything grows, it’s not just about the person's body getting taller and in a weakened state, it might be best to not use up energy trying to grow. When she gets her new liver and kidney, Mikaela should still have time to grow--and if she doesn't get much taller, it really isn't a huge deal. Like they say great things come in small packages! Secondly, he was surprised at her ammonia level and amazed that she was still coherent. He will be keeping an eye on her ammonia, creatinine and phosphorus levels. We are so blessed to be surrounded by such a great team of medical professionals.
HAPPY NEWS-- our nurse just came in and M's ammonia came back at 113-still pretty darn high but much better then 225!! Hopefully, it will continue to trend in the downwardly direction.
Well, my tummy is calling so, I am heading over to the RMH to grab some grub while Mom sits with Mikaela. I will keep you all posted. :)
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